Hey, Neil, this is rough. I hate everything about MS, but you are tough and kick its arse. You have a fantastic, lovely wife and I admire your spirit. Keep going and know that you have a UA-cam family that will be with you every step of the way. All the best, Neil.
Thank you Steve, both Teresa and I love all you guys on UA-cam and respect every one of you for following us on our channel. MS is very tough, and it's pretty difficult for me at the moment going through a re-diagnosis to possible NMO. Thanks for the message Steve, and I hope you're as well as can be at the moment my friend.
Good evening Neil and Teresa, I just wanted you to know that you have been my biggest support over these last few weeks. I am in the middle of the whole diagnoses process, iIhave a spinal tap very soon then back to the Consultant. Your straight forward, calm presence has given me such comfort as there is no one that I can talk to about all my symptoms. I feel sure your balance and strength in your legs will improve when your medical team call you in. I am so frustrated waiting for appointments. Teresa and you are my such a wonderfully kind couple, he,e care. X
Dear Sue, thank you so much for your lovely message. We are so touched that we have been able to give you some really good support over this last few weeks. I was actually diagnosed with MS back in May 2013, but now I'm also going through a re-diagnosis process once again. And yes, it is VERY slow going and very distressing. You may already now this, but I have videos on my Spinal Tap process and how I coped/handled it. This may be helpful to you further sue. We are so sorry to hear that you've had nobody to talk about your symptoms, this is just terrible to hear. I'm not sure how I would cope without being able to talk to Teresa about "what's happening today!" .. if you know what I mean. Sue, if ever you need to talk to somebody about your symptoms please contact us as we would be more than happy to chat with you. Look after yourself - Neil & Teresa x
Hi Neil. Thank you, as always, for sharing your experience. I hope you find some relief soon. I very often sit on my rollator and wash up or cook. Without my chair. I would be on the floor, too. Being able to do things is rewarding to me, so I figure out how to make it happen. I hope you know how much your videos help us.
I can totally relate to the rewarding side of it Jane, me too! It makes me feel like I can "still" do certain things and give me that feeling of accomplishment. Thank you for your message, and I hope all is well with you Jane.
Dearest Neil. I’m sure you’re missing being Theresa’s strong protector but marriage is sacred and I’m sure she loves and adores you regardless. I’m getting scared now too. I can’t walk some days (most) my knees kill me to get up off my chair (my lift chair is coming soon yay) and I can’t even lift my left leg out of the car. I have to pull it out with my right arm. My left arm is crazy with a mind of its own. Mimicking the right and swelling.the deep bone pain on my left side is debilitating- I just want to cry sometimes. I tried standing at the sink to cut up a chicken one pot stew (yum) and my back and knees just went. My neuro cancelled my appointment after waiting 14 weeks as he had a family emergency. I think I’m going to just go to an ER public hospital and say help. Thinking of you - you’re both so lovely. Take care of each other. Andrea in Brisbane Australia
Hi Andrea, that is just terrible being cancelled after 14 weeks.. I appreciate it was a family emergency but surely they are obliged to get you back in faster considering the circumstances. Lets hope so. I'm sorry to hear of all your pain and mobility issues, you're not alone. When getting into the car, quite often I cannot lift my left leg into the cabin, I have to lift it with my hand also. It's very disturbing having to do this because in the past we've just got in and out of the car without thinking haven't we right? Good to hear you've got a lift chair coming, I hope this really helps you. As for standing at the sink, I'm totally with you there. For me, it's a case of I done it for years and years, so I want to continue doing it. But all of a sudden I'm finding these things difficult but I'm reluctant to give them up. You look after yourself Andrea.
I’m trying to find acceptance. It’s so darn hard. My heart goes out to you. Hang on mate - hopefully we’ll all get a break soon. 💖💖💖 from Andrea in Brisbane 💖 to you too Therese. I look forward to your next vids.
Your videos are so inspiring!!! What you say had so much meaning to me. There are solutions for our condition. But yes it will never be the same again. So let us be creative and look for new ways of doing the same task✌
Hello Neil and Teresa, I have been following you for about one year now. My brother got diagnosed last year for PPMS He lives in Holland and I moved to the US in 1985 so lately I have been traveling more to see my family and my brother. It was very difficult to see my brother in this condition. He can barely walk to keep his balance and everything you do is really a struggle. His wife left him last year and I guess she couldn't cope with taken care of him after being together for 23 years. He is alone and I feel so bad for him. My mother lives about a mile away from him in a nursing home and she has Alzheimer. She is almost at a point she will not recognize any of us. It takes my brother over 1 hour to walk to her place while a regular walk will be about 8 minutes. He wants to do it while he can because it will give him some exercise. I'm not sure if is safe having so much trouble keeping your balance. I know it is hard to deal with this illness but what got me is that you have the sweetest, most kindly and loving wife who does everything for you. Try to keep the glass half full no matter how bad your day is. Clemens
Hello Clemens, and thank you for your message. I'm so terribly sorry to hear about your Brother with PPMS, this must be very difficult not only for him, but also to see for you. I often think about how difficult it must be for my brother watching me decline and not being able to do a dam thing to stop it. Like Teresa, my brother helps me a lot around the garden when I need him, nothing is too much trouble for either of them. I'm also really sorry to hear about your Mother having Alzheimers, this is a terrible condition and must be extremely difficult not only for your Mother but the rest of the family to cope with. Life really does feel so unfair at times doesn't it. Hat off to your brother who made the walk to see her though, he did good!! I can totally understand his reluctance to use technology to help him go from A to B, I am like this also.. wanting to continue to use my legs for as long as possible. Thank you for your lovely words about Teresa, she is my rock and I'm not sure how I would cope without her. I really appreciate your support on my channel Clemens. Take care, Neil.
Hey Neal, I'm here in Brazil sending good vibes for you! You're facing hardship but you look very strong and resilient! Wishing the best for you and your wife!
From the Eastern Shore of Md. Sending my love. I definitely understand your pain. My MS effects my left side as well. Rain bothers me more than heat. Yesterday it rained so bad. Leaving working and having to walk no more that 40 feet from our office door to my car was SO difficult. It's almost the consistency of a robot moving. I'm still blessed but sometimes it can be almost embarrassing. Just hang in there. Your in my thoughts
Hello Natoshia, and thank you very much. I totally understand your difficulty in walking to your car. Your description of a robot is perfect, it’s the same for me. My back and leg muscles are as stiff as a board. I’ve not noticed any change with rain, but yes definitely the heat effects me. When you’re struggling with the walk to your car, do you feel you’re being watched? Sometimes I do and I really dislike it. Stay strong. 🙏
It's nice to see you again and I hope that you get the treatment that you need, I have times when I feel very frightened. The whole M,S. thing is so unpredictable. I try to stay positive and count my blessings but there are dark days when I feel sorry for myself. Anyway, take care of yourself and good wishes to you and Theresa.
Thank you Silvana, I can very much relate to your fear.. I also have a lot of very dark days. There is absolutely nothing wrong with feeling sorry for yourself, you have a chronic illness, not only that you have a Auto-Immune disease! You are entitle to, you can join my club :) Good wishes to you also, take care of yourself. Best regards - Neil & Teresa.
I really understand Neil. It has been over 20 years since I have cooked a meal or done the dishes, or shopped etc. The only house work I ever do is sort the washing. I can not look after myself let alone anyone else. I must live with the support of carers. It is not ideal. But not having outside support is worse. The thing though with you is you know there is something that can help and you aren't getting it and the system doesn't take your suffering into account. I am sure you will improve somewhat when the heat subsides. Meanwhile you must stew and that is very hard.
Hi Willo, and thank you. It's just horrible not being able to do things you've done for years, isn't it. So Sorry. Yes, you're correct I'm pretty dam sure I would start to feel much better if the "system" would work a little faster. Fortunately I'm feeling bit better today than when I shot the video, but then its not so hot. Love to you - Neil & Teresa. x
I´m with Teresa here - I have never for one second thought you were moaning. Ever. Expressing your (very understandable!) fears and anxiety is definitely not moaning. I applaud you for being open and honest about what you´re going through and I assure you it´s helping others out there, including myself, because I can relate to a lot of it. So thank you. I am very sorry to see and hear that you´re struggling so much with your mobility. It does look like it takes a LOT of energy just to get from one end of the room to the other. Like you say, the horrid heatwave isn´t helping. I don´t know if there is a chance that you will feel a bit more mobile once it cools down in the next week´s time, but I hope so. I also hope the professors, doctors and nurses will get their fingers out of their asses. I know it´s vacation time, but they have kept you waiting for so long now. C´mon people! Take care and say hi to Teresa from me. Hugs and thoughts. x Rikke
Thanks for this Rikke.. it's always nice to hear from you. Yes, I'm feeling a bit better now that it has cooled down. It's actually only 15 degrees out there today, and raining!! Compared to 36 degrees last Thursday, crazy weather. I'm giving it a bit more time for the Prof to write this letter and then I'm going to start chasing. The "system" is just under so much demand, it's just a very slow process unfortunately. Take care - Neil & Teresa x
Neil, my dear brother. I can only imagine the pain u are going through and no, u are not moaning at all. What u are doing is very normal. But I am awfully sorry that u are suffering :( Not to mention I know you're a gentleman, like, it's in ur nature to open doors for people especially for ur loved ones, carry heavy stuffs or get them safely to their doors etc etc I think the one thing you've gotta carry on doing is that u need to just always do the best u can do, no matter what 💪 Try to not feel guilty about it because it isn't ur fault. Also I think you're very blessed u have Teresa. She's a very adorable, courageous and kind hearted woman 😍 There are some truly nice and noble people in this world with good hearts and I think ur wife is definetly one of them. I also hope she is doing ok 🐞 I know the hot weather is making u feel terrible like u are going through hell or something but plz keep on going Neil. Never ever give up. I believe u will be ok one day. Chin up 🕹 Regards Adam.
Dear Adam, thank you so much for your lovely words and inspiration. I've just read your comment out to Teresa and we are both so touched. You said "Try to not feel guilty about it because it isn't ur fault." and I've never really thought about it like this before, well I don't think so. But it's so true, it really isn't my fault.. I have absolutely no control over this situation. All my life I've written computer software, I can build computers and take them to pieces, I can solve complex computer problems .. but do you know what I find so frustrating, I can't fix myself!! Teresa is one in a million, I'm not sure what I'd do without her, we were definitely meant to be together. You wouldn't believe we've been through over the last 30 years, and survived!! Take care Adam.
Hi Neil. I'm sorry to hear you're struggling so much. With regards to your frustration about not being able to look after Teresa in the ways that you want to...from my point of view as a woman, as long as she knows she has your love and you are a kind, honest and decent human being she will care for you regardless of your physical abilities. She's happy you are by her side. I find a cooling scarf really helpful to keep my core temperature stable/cool as it cools the blood going to and from your brain. They are available on Amazon and not expensive. I soak mine for 10 mins and it stays cool for hours and enable me to carry out my house chores much more comfortably. Hugs
Thanks Becky, that's very kind of you to say. We rarely get temperatures as hot as it was the other day in the UK, but I feel I need to be prepared. The cooling scarfs looks really good, so I've just been on to Amazon and added some to the basket. Teresa also thinks they look great and will also use them. Thanks Becky.
hi neil, I'm so sorry your having a hard time of it. I have no doubt this un precedent heat wave is definitely enhancing your health issues. Hope these tips I give you will help. Use a house hold fan and place next to you. Take a water spray type you use for your plants and spray this into a moving fan ( on mist setting) this will blow cool water into your face. Try freezing a scarf and place around your neck to cool you down. Also wrap wet damp tea towels around your wrist. Try placing your feet in cool water. All these will help you cool down and feel more comfortable. There are also cooling vests on the market. 1 is basically ice packs inside a waistcoat like jacket. the other is more on a tunic like dinner ladies wore. This one you soak in cool water then ring out and wear. Between the cool air and the damp tunic is meant to help. Hope some of these may help you xx
Thank you Kim for those very helpful and useful tips. Teresa and I have been sat in front of two fans the other days when it was so hot which helped loads. I'm feeling a lot better now the weather has cooled to 15 degrees today believe it or not. That's UK weather for you. lol. I'm also in the process of ordering some cooling scarfs (towels) which should help a lot also for next time. It's such a shame because I've always enjoyed the warm weather, slowly but surely i feel everything is being taken away from me. It's horrible. xx
I'm so sorry for your worsening condition. Maybe soon they can find some type of medication that can help. I appreciate all you do for sharing your life with all of us who share the same disease and varying symptoms. Have you thought about CBD or is it banned in the UK. I've had some success with it in eliminating some of my pain symptoms.
Hi Matthew, and thank you. Yes I’ve tried the CBD in varying strengths and I’ve spent a fair bit on it. Unfortunately to no avail though. A lot of people say it helps with pain and spasticity, for me however I can’t see any difference. That isn’t to say it won’t work for others though, because it’s got such good reports.
Neil it’s awful to see that’s you're suffering really badly at the moment, if it’s any conciliation just remember you’re not the only one my friend , this recent heatwave has been relentless, my legs have been feeling like two heavy concrete poles , and I’ve had more problems myself just trying to move around the house , lol !! I can completely understand you’re feeling scared anyone in your position would be , you’re trying your best to cope with all these weird neurological symptoms and your not on any medication to help . I hope you get booked in soon for any further tests that you’re waiting to have , and then I hope you get some steroids and an ongoing medical plan with medication etc . I’m keeping everything crossed for you. In the meantime hang in there , I know it’s bloody hard , and keep reaching out to all of us cos we’re all here for you ! Stay strong Neil , take care , Grace x Ps) do you have a contact number or email for the professors secretary /pa... it would be good to let them know that you’re really deteriorating and to see if they can get you booked in quicker.
Hi Grace, and thanks for your message. Oh yes, I can totally relate to your legs being like concrete poles. I often describe mine as being set in concrete, because if feels like these are being squeezed as well as heavy. Thanks, hopefully I will get some treatment very soon. I'm going to start chasing if I hear nothing in the next week or so. Unfortunately I won't be seeing the Professor again because he was only for a 2nd opinion. I hope this message finds you as well as can be Grace. x
I know it’s difficult Neil, but try & keep your spirits up ! I was diagnosed in 2003 & had a stick your head in the sand approach to whole Scenario, its only as things progress that the impact of this demoralising condition on everybody involved hits home. It is not easy to take a step back & let others carry out the tasks that you feel are your responsibility! The effects on your self worth & confidence are a bitter pill to swallow, however if your family are able to help then in my humble opinion you should let them. This is a cruel turn of fate & if you can free some of your energy for tasks that bring you some enjoyment then that’s all wee can ask until a miracle cur e is found.I wish you all the best and hope you have some good days soon 👍
Sending love your way. I'm only just beginning my journey. I've been having awful symptoms for a while, and I'm finally being sent for an MRI (it only took God knows how long, and an awfully nasty ER doctor before I got the courage to talk to my GP). I am lucky enough to still be mobile, but this last fortnight I've really struggled with the same feelings as you describe in this video. I'm a single mum - I escaped from an abusive man with my children, and I had such dreams for us...and now I have so much guilt when I am forced to ask my kids to fend for themselves for an hour or two while i (try) to nap - if the spasms will allow. I am so glad that you have such wonderful support from Theresa. Hope it all eases for you soon.
Hey there😊 Thank you so much for your lovely message. I’m so pleased that finally you have been listened to and are being sent for an MRI scan. It’s amazing how many people on my channel have said they struggle to get Docs to listen to them and take them seriously. So you’re not on your own with this. I’m sorry very sorry to hear you’ve been in an abusive relationship, this must have been terribly hard for you and the children. Thank goodness your safe now. I bet you’re thinking dam, it’s just one thing after another now you have all these horrible symptoms. Just remember, you are not alone!! Ok, we are all in it together. Not sure how many of my videos you’ve watched, but I’m actually in the process of being re diagnosed. I no longer tick all the MS boxes after being diagnosed with MS in 2013. You hang in there, and anytime you need to chat give me a shout. Take care - Neil.
You're right there Tom, I've had oral Steroids before but they've not touched me. I only seem to respond to the IV steroids which seems to be stronger. Thanks for your concern.
Hello from California. I am praying 4 u both. I'm struggling and scared 2. I live alone and these hot day are wiping me out. Lost the ability 2 drive so taking the bus 4 appts and shopping. Trying 4 some help w/wheelchair but drs dont give me much hope since i do kive in a small placeer the years i have learned how 2 get around g and hanging on futniture doorways etc. Neal i am thinking and hoping once u c ur dr again u can finally get help!
Hello Mary, I'm so very sorry to hear that you're also scared. These diseases have us at our wits end at times don't they. Sometimes, I think the Dr's should spend a day in our shoes, it might give them (or some of them) a good idea of what we have to deal with on a daily basis. I hope you manage to get your Wheelchair. I hang on to furniture all the time, I literally cannot move around without holding on to something. I only said to Teresa last night, it's been years since I climbed the stairs without holding on to the banisters!
I just have to leave a comment. ( My first time!😊). I am 56, have MS, ( I was first diagnosed with Transverse Myelitis) and I know how you feel. It is the sadness that effects me more than the pain. The longing for energy to do things. I know that it does me no good to let it get to me, but, nevertheless, it does. I waiver between mad and sad. Some days are great though, and I think I hobble between those. You are not alone, and I think it's wonderful that you reach out through these videos. You are a wonderful person!
Hey Shelly, well thank you very much for your comment and welcome. I was also first diagnosed with Transverse Myelitis back in 2007!! Later to be diagnosed with MS in 2013, now I’m being re diagnosed. I completely understand your sadness, the longing to be able to do things you’ve done for years but simply don’t have the strength or energy to do them now. It’s is precisely the same for me, terribly sad and upsetting. For example this time of year is particularly upsetting for me because I see everybody, friends and family all going away on holidays and days trips, really enjoying themselves. I can’t do any of these things now, it’s soul destroying and very depressing. I’ve also gone through the mad stage, but I don’t get mad now ever because it just seems to makes things worse. Thank you so much for writing Shelly, and for your kind words. Please stay in touch. 🙏
@@NeilBradleyMS I wanted to tell about Dr. Steven Gundry. You can read and listen to his Utube videos and decide things for yourself. I'm giving it a go, and have been on his plan for 19 days. Too soon to to know, but I just wanted to share it with you. Shelly
I am disappointed that I just missed your "live" video. That's what you get when you arrive late to the party. Sorry you're feeling rather shitty at this time. Your explanation of what you are dealing with as you attempt to stand for any length of time is spot on with what I too experience many times. "spot on" Although I appear to experience much the same as you I am aware that the levels of which we experience these things may be quite different. In saying that I only wish to encourage you/us, if only temporary. And I too feel "inadequate" at times I "should" be helping my wife but am unable. That just kills me.🙁 PS....My wife Tammy, just walked into the room and said "we need to take a vacation in the UK and visit Neil and Teresa" I am so down with that.🇬🇧😄 See ya.
Hey Lee, ahh sorry you missed the "live" video, it was actually pre-recorded.. I scheduled it to premier last night leaving 24 hours (9pm tonight). I think next time I'll leave a few more days for people to spot it. It was so nice to read your message, and I can see that you TOTALLY "get it" as to how I'm feeling, yes the feeling of inadequacy is just terrible when I see Teresa struggling with heavy bags. The frustrating thing is, I've got full upper body strength and I'm physically stronger than her, I just can't walk with anything even slightly heavy. My balance is just completely gone, nothing there and my legs are so terribly weak. Your wife Tammy sounds very switched on :) With the wonder of the internet these days, we can still chat (video) with thousands of miles in between. Maybe one day we should set something up. Take it easy my friend.
@@NeilBradleyMS you need to find other things that will help make things easy for the both of you I think this may help Helping Hand Deluxe Stair Climber Cart in Silver | Folding Cart Holds Up to 60 lbs - Great for Shopping, Camping, Sport Events, Much More its on amazon for $ 34.98 it would be worth it mabe check it out hugs to u and Teresa luv u both
Sending good thoughts your way Neil, in hopes that you can get the steroids needed to feel better. You shouldn't have to fight so hard to get the meds you need, when you need them! Been through it myself, and I feel your anguish. Take care, hugs to you and Theresa.
Thank you Rona, it’s just such a waiting game and there’s nothing I can do about it. In the meantime I just get worse and worse. I’ve literally just been outside on our patio and spent 20 mins sat in the lovely warm sunshine. However now, I can hardly put one foot in front of the other because I’ve heated up. Something else that’s been taken away from me. I’m so tired of it all. Sending some hugs 🤗 right back to you there, from Teresa and I.
It does seem as though ms is out to rob a person of every joy in life! Seems your Professor is moving at a snails pace at getting his letter out to your ms nurse and GP! Hang in there😃, hopefully relief will be coming soon. Hugs to you & Theresa.
Hi Neil, so.sorry to here how badly you are suffering. I'm nowhere near as bad as you with mobility but identify massively with the feeling of fear. I had my head and full spine MRI on Tuesday and hope.its going to be able to find out what's going on. You and you wife are fab and I love your video's they even make me feel like doing some if only for myself. But I fear I'm wouldn't be able to emotionally as I get so upset and the fear and not knowing is a major factor in that. I do hope you feel better soon and get some answers and treatment. Take care.
Hey there.. thank you for your kind words. I want you to know that I can completely relate to the fear you are experiencing. You are not on your own! It’s very difficult because certainly for me, I see myself getting worse almost by the day. Take this morning for example, my wife and I have just been out for breakfast. When we’d finished, she went to take the rubbish, whilst I got up. But, even with a crutch I couldn’t move off the spot because my balance is completely shot!! I was stuck where I was until she returned to help me. This is so disturbing for me, because out in public there are so many people going about there normal lives without any issues. It could be me being paranoid, but I can feel the staring and hear the thoughts. It brings me great joy to hear that our videos give you a little motivation. It’s extremely difficult gathering the energy to do anything when you are struggling with neurological issues on a daily basis. You can do this!! I set myself a task each day which I try and complete, this also gives me a sense of purpose and achievement. Give it a try, it doesn’t have to be anything too strenuous. The feeling of fear is VERY real.. in eight years I’ve gone from full power to how I am now. I’m scared of being alone in public, I’m extremely lucky though because I’ve got Teresa who is a God send. I worry all the time about the future. Let’s hope you get some answers soon when your results come through. Here if you need a chat.
@@NeilBradleyMS hi Neil and Teresa (you are blessed with Teresa she's an Angel, I feel so lucky to have such a good supportive family too) thank you for.your reply I know I'm no.where near to.your level of difficulties but its good to know that there are others who have a shared feeling of fear (sounds strange but you know what I mean) this is something I feel many consultants do not understand and in some cases do not appear to care and in fact can make you and what you know you are feeling.invalid. I like you try to do as much as I can and you never know what you're going to be able to do from moment to.moment let alone day to day. I thank.you and Teresa again for sharing your experiences which.I hope.you both know are very supporting in such difficult times especially the journey of trying.to find out the cause or causes and trying to get the correct treatment. I understand you have had many diagnoses and are still on.your journey trying to get to the bottom of what's causing yours which after so many years must be so frustrating but your fight is inspirational and a.reminder that we are not alone. I know.you spoke.recently about doing a time.line. this is something I am interested in very much as I don't know about you but some symptoms can be so strange and at times difficult to explain. I have complied a list of symptoms that luckily I had been texting to my daughter whilst they were happening to have some sort of live log of what I have experienced as I initially thought it was all.part of my.TIA but I now know these were not part.of a TIA. So sorry if I have gone on so much, If.you wouldn't mind me asking some advice privately I would.be most grateful. Many thanks once again and sending positive healing thoughts yours and Teresa's way. Michelle.
Hi Michelle, great to hear from you again. And please don’t think you’ve “gone on” it’s absolutely fine. You can contact me privately on Facebook Messenger by searching for “neil.bradley.37”. Look forward to hearing from you.
I'm sorry that you are having a tough time not being able to help your wife. I am not trying to downplay what you are going through, but I am going through testing for MS myself right now, and my neurologist tells me it is not showing up as MS, that he thinks "I am fine". I said, so because you think I am fine, my symptoms will just disappear now? I have a LOT of symptoms. I won't list them off here. But he wanted to know what symptoms I was talking about, so I had to list them off for him. Only then, would he do a couple other neurological tests in the office on me, and order other tests on me (which all have come back negative) to include a lumbar puncture. I will say this however. My walking is nearly as bad as yours. I come close to falling all the time, my knees, legs and back do not cooperate as they are weak, and I have to sit. What is bad for me, is I live alone. I have no one to help me. Well, I guess I have written a book, but you get what I am saying. I am going to ask for a second opinion, see what happens. I will say a prayer for you Neil. I am scared for you. I am scared for me, as well. My doctors don't really seem to care. You have a wonderful caregiver in your wife. Bless you both.
Hello Dianna, thank you for your lovely message.. I'm really sorry to hear that you live alone and have nobody to share your fears with. I'm always telling Teresa what's worrying me and she always listens carefully. I'm very lucky to have her. Anytime you feel like to talking about your issues, we are here to chat if you wish. Unfortunately there is no specific test for MS, it's a case of doing several other tests like MRI Scans, Lumbar Puncture, taking a history to rule out other condition.. a process of elimination as it were. The walking is very scary isn't it Dianne, I'm actually a little bit better than on the day the video was shot because it's not so hot. By the way, if you're going for a Lumbar Puncture, I have a few recent videos on this you may find interesting. I had my first LP in Feb this years. Take care - Neil.
@@NeilBradleyMS I've had the lumbar puncture, and it came back negative, along with everything else I've had so far. The last test I am to have is the neuropsychological testing - it's a 5 hour test. I will ask for a second opinion afterwards. If they find it isn't MS after that, they *have* to figure out what it it! I can not live like this!
Neil.....you need physical therapy my friend. Maybe a different assistive device. I gave in and used one and it was so much easier. Difficult but easier if you get what I’m saying. Your posture is draining you 🧡 It’s a progressive disease we have to make the best out of life. Not easy!! Love to you both.
Thanks Karen, I've done Neuro Physical Therapy for six months, and it didn't really make much difference. Up until recently I continued with strengthening exercise, even found some more of my own of YT. But I'm just weak now to do any of them, horrible vicious circle. My only hope is steroids now.
Hi Neil. I'm so sorry that you are feeling so bad my friend. I understand my friend. When it's hot outside personally I have to be in air conditioning all the time. Just FYI MS at least for me doesn't like hot weather. I've had my balance go wacky with a right foot fall but I could also get a vertigo attack or a migraine. I find that the best relief I get is by eating popsicles that lower my internal body temperature for a little bit. It doesn't help the balance but it will go away when it cools down. I've had this issue for 3yrs and I just have to deal with it because it's an exasperation of my first 2 attacks so steriods for me cant help. My Drs have told me to be more aware during the summer because my 1st attacks happened during the summer so apparently it's more active somehow because of the heat. Winter however I get stiffness in the legs but not much else. My summers have not been fun time. I can't do anything I usually can so I understand my friend. Mornings are better for me too. By about 300 pm the fatigue sets in and summer I'm more tired as well. So all in all I understand. I get down because I really can't do things with my son or anyone if it's over 70 degrees outside. I feel your pain my friend. I can't help my family do anything and I'm so used to it being me that takes care of things but now I can't so it feels bad. Don't worry you'll probably be better when it's not so warm at least I know that come fall I'll feel better than now. It's going to be 90 degrees today and I can feel it even before it gets 90. I can't explain how that works but I feel like a human berometor. Chin up my friend you are not alone I feel your pain.I hope this helps you my friend. I know it's not fun at all but one thing about MS is it changes everyday. I never know exactly what is going to happen I'm still trying to figure things out. I just keep trying and when things are bad try to find something that gives me some comfort. Hopefully tomorrow will be better my friend. For now hang in there ok? It could change in a day. I wish you both the very best. Thank you for posting your video I thought I was alone with my difficulties with the heat. Thank you. Peace my friend. 😇😇🤔😔🤗😊
Hi there, and thank you for your lovely message explaining the difficulties you have in the heat. I can very much relate, and rest assure you're definitely not alone with these problems. It's very difficult isn't it not being able to do things with the family because of our condition, I find this particularly distressing. This time of year people are planning day trips out or holidays, where as I can't do any of that because I can hardly walk. I'm usually also in too much pain. It really doesn't seem fair when all my life I've just tried to be kind and helpful to others. I almost feel like I'm being punished but why? Peace to you also my friend.
Hi my friend! Hugs through UA-cam to you. Now...Its times like this where I don't like doctors....it's not fair for you to go through this without a treatment plan in place! Take your time when walking, falling now is the scariest thing....I had my worst fall this past Wednesday and I now need to wear a medic alert device as I was by myself. I hope the dr gives you the steroids quick and that you see improvement!! Again hugs to both you and Theresa from NJ!!🤗🤗
Hey there, I'm really sorry to hear you ad a bad fall.. I'm hoping you didn't hurt yourself too badly or broke anything. Yes, I'm aware I'm extremely prone to falls now and I'm so SO careful. The last thing I need is a stay in hospital because, I can barely sleep comfortably in my own bed with all of my pain and problems. I've not yet got a treatment plan because I'm in the process of being re-diagnosed. I still have more tests to go, but it looking like I've not got MS now. I will of course let you know anything as soon as I do by way of a new video. Sending hugs to you also.
Hi Neil & Teresa, Neil I'm the same as you atm I'm so tired my right eye is still blurred, I go to the eye hospital on friday to get the camera so they can see what's going on, It was my 50th Birthday this friday gone and I was sent to bed by dave cos I kept falling asleep and dropping things so missed my birthday really, the pain is wearing me out & I'm feeling like I've had enough. Dave got me a bar stool for the kitchen, it's great cos I can do dishes or cook and I can change the hight as its gas movement, it's a life changer, I think you would benefit from it like I am, anything to make life easier . My heart goes out to you, its crap being us, we need to fight against it with all our strength, we need a break. Again I have headphones on with no music I think it's just habit now the same as I've had a fan in the bedroom on every night for about 4yrs lol , little things make all the difference 😉, Love to you both xxxxx Sue XxXxXxXxXxXxXx 😘😘💜
Hi Sue, Teresa and I would like to wish you a belated Happy 50th. It sounds a bit like my last birthday when I was 46, I was having IV steroids at hospital, I then came home and was in so much pain I just went to bed. I too am feeling like I’ve had enough Sue, so that makes two of us. Your new kitchen stool sounds just perfect. I’ve just been out and sat in the sun for about 20 mins, now I can hardly move because I’ve heated up. Something else I can’t enjoy now. I’m so peed off with it all, I really am. Love to you too xx
Hello Neil, Chris in Albuquerque here. Just wanted to reach out to let you know I am experiencing every thing you talk about in this video. I think I am a few mouths ahead of you in my decline. I am 56 and was diagnosed in 2014. In a years time I have gone from a cane, walker and now wheelchair bound. Like you I cannot stand and when I try I slowly start to collapse which makes shaving, doing dishes or even dressing. Now I am loosing function in my hands. I just did 1.5 years on Ocrevus with no positive effect or improvement. Dr. wants me to switch to Mavenclad which I hope to start in a week or so. Today Friday August 9th is my last day of work for I am going on disability I am totally stressed on how I'm going to survive as I am single and live alone. Let it go about not holding doors for your wife, I can relate about being a chivalrous man but she loves you and she's with you all the way. I was number 116 to like your video. Chris
chris crawford Hello Chris, and thanks for the message. It’s nice to hear from somebody that can relate to everything I put in the video. Not that I’m at all happy about that, because life is very difficult for us both. Yes, yes and yes Chris.. shaving, doing the dishes and simply just dressing is so so difficult. I normally sit on the side of the bed to put my socks on, yet this morning I couldn’t do it as my leg is to weak to lift. I improvised and laid on the bed doing it that way. Putting my shoes is also getting harder, everything is. Can’t stand for more than a few mins, I normally shave using the mirror in the hall, but find myself needing to rest half way through. The slowly starting to collapse thing is so very difficult to explain to people, but you get it don’t you. For me also just standing on the spot balancing is sometimes impossible. My balance is practically nil. I’m in the same situation as you Chris, as I too have had to give up work. The pain at night stops me from sleeping, and also pain in the day. I am extremely fortunate though in as much our house is paid for (in 2013) so the roof over our heads is secure. When we purchased our house in 2011 both mine and my wife’s health started to deteriorate. At the time we were both working full time and I decided to put every last spare penny into the mortgage, best thing we ever did as now we are too ill to work. I’m so terribly sorry to hear of your worries Chris, do you live in the UK? If so we might be able to offer tips to help you with the benefit system as we’ve got significant experience with it recently. Thank you for your 116th like👍, it’s very much appreciated. Stay in touch - Neil.
Hey Neil! I know all too well about heat sensitivity. I have a cooling jacket and neck ice pack. I live in Florida and has been between 35 and 37 degrees constantly. I can’t go outside without feeling like I’m actually dying. I get weak and my head is tingly and just sluggish. I am going this morning for my yearly mri. I asked to have my cervical and thoracic included so that is why I have to do it on Saturday because its a long one. Do you still take baclofen? It helps me. Also my neurologist put me on naproxen twice a day. That takes the edge off. When you get hot put a ice pack on the back of your neck And that will help. I wish there was something I could do to help but I will pray.
Thank you Patty, and it's lovely to hear from you as always. I've literally just found some cooling towels (scarfs) at Amazon so I'm going to be a little bit more prepared for the next bout of very hot weather. For us, in the UK last Thursday was 36 degrees and it was insane! I said to Teresa I can't imagine what it would be like continually for a few days. But you say where you live this is what it is continually like. WOW!! I hope you're managing to stay cool ok Patty so that your symptoms aren't too bad. Can you believe it's only 15 degrees today, and raining! That's the UK weather for you. I've tried Baclofen, but it makes me much wobblier so I don't take it now. The only drug that seems to help is Diazepam believe it or not, it helps me sleep, helps with legs spasms and "seems" to help my mobility by spoothing out the spasticity a little bit.
Hellos, so sorry I haven’t left a comment on your previous videos. I feel so bad for you. Both you and your beautiful Teresa inspire so many of us. I don’t think moaning comes in to this, you can only do what you can do. My hubby does absolutely everything for me, even on good days. For my birthday this month he got me a disability buggy, I haven’t gone anywhere on my own yet, I collected my 5 year old granddaughter from school, and gave her a ride home, when we were still in school grounds, she was sat on my lap on the buggy and her mum asked why she was looking at her feet, he response was ‘I don’t want no one to see me’ hahahaha ok she was embarrassed but not so much to walk home. This heat is blooming awful, it’s exaggerated every pain throughout my body. I found a high powered fan and a water spray fantastic, I even plonked myself in the Grandbabies paddle pool lol... still it’s much cooler this evening, I hope your feeling better for this temperature drop too... xxxx
Hi Michelle, it's always nice to hear from you.. and please don't feel you have to comment on every video. The buggy sounds great, I had one which came to pieces and fit in the boot of the car. But, it was really difficult to lift in and out, and even harder to put together (it was meant to be simple). So it had to go. I bet your Granddaughter loved the ride on your buggy!! The heat has been a killer, we've been sat in front of two fans lol .. it's much cooler today at only 15 degrees outside, less than half the temp it was last Thursday (36 deg). Crazy UK weather. Look after yourself Michelle. xx
Neil, becareful of those voices in your head! If one is constantly talking louder than the other you need to stop listening to that one. The voice that is saying you should do this and you should do that needs to shut up for a bit. We all need to be wary of depression so don't let that voice get you down. Consentrate on how you will make it up to Teresa when you are better and I know you will be better soon. P. S. A message for Teresa! Get some hot water in a washing up bowl and take it into him so he can do some washing up. It sounds to me from what Neil is saying that it gets worse just before washing up time which is a bit convenient so sit him at the table and get him to work. 😁 Love to you both.
Hi Ian, thank you for that.. I'm quite familiar with those particular voices, especially when the pain and disability is making me miserable. I'm quite strong willed and therefore I remain firmly in control though. But thanks for that, I know where you're coming from. As for the washing up bowl, hey you can do one.. don't give her any ideas lol ;-) My secret is out lol. ha ha.
Neil, have you looked into your food allergies? My husband has ms and his symptoms have been helped with stopping gluten and dairy. You may want to take a food allergy test. It is common with autoimmune. I hope you have a break from this horrible disease, my husband says a lot of the same things. You are not alone
Joy Lauper Thank you Joy, I’ve had plenty of blood tests but not food allergy. I don’t eat or drink a lot of diary, and I’m pretty sure I’m ok with Gluten. I hope you and your husband are managing ok. Take care.
Hi neil sorry things are so bad for you ..my father was like you a true gentleman he had lung cancer had the lung out but the other lung had emphysema he was always the strong one and that really took its toll on him .I really feel for you in this video I can see how down you are ..can you apply for a stair lift ..I'm sure you would qualify for one
Hi Grace, ahh thank you for telling me about your father.. I can understand how his illness took a toll on him. Teresa and I have talked about a stair lift many times, but I always hold back. I like to try and keep doing things for as long as possible before resorting to technology. I keep it in mind though. I am however feeling better than I was the other day, now that it has cooled down. Can you believe it was 36 degrees on Thursday here in the UK, today its 15 !! I've just put my jumper on as I'm chilly! Crazy weather.
I hear you, Neil. It must be very frustrating to not help Teresa like you want to, but it probably goes a long way for her to know that you want to. Can you contact the professor's office and ask how things are proceeding, as you are awaiting his report to be sent to your other doctor so needed treatment can begin, as you are having difficulties and would like to start the treatment. Hey, Neil, the squeaky wheel gets the oil--don't be afraid to enquire or at least leave a message for the Prof's office. Good luck to you and Teresa.
Hello Sheri, it REALLY is very frustrating not being able to help Teresa. But as she points out to me every time, I help her a lot in other ways. I think I may well give it another week for the letter to arrive (I'm going to be copied in) and if nothing comes I shall start my enquiries and give them some nudges. Take care of yourself.
Thank you Michelle, I really appreciate all of your comments and input. We read every one of them. I hope all is as well as can be with yourself. Take care.
For me, I do respond to steroids a little bit; enough to give me a little bit more quality of life. But it always soon wears off which is the soul destroying thing, then I continue down the slippery slope. I know that hopeless feeling. 😔
Hello Julie, lovely to hear from you. I don't suffer with the dizziness but I sure do walk as I'm constantly drunk. In fact my balance is practically non-existant, so I know exactly how you feel and what you're going through. Anytime you want to talk Julie, we're here. Take care.
I meant to also add, the heat yesterday was an absolute killer for me also. It's unusual to have temperature of 36 degrees in the UK, it WIPED ME OUT. Fortunatley I'm a little bit better today.
Still waiting on for results on MRI scan it's a long haul so fed up of feeling dizzy all the time. The only time I am not feeling dizzy is when I sit down most of the time x
I hate this fucking disease, it truly is a nightmare. Avoid all hot drinks, food, etc. I live in Texas so I know how bad it can feel... popcicles help, I avoid going out at all costs during the day. If you think you’re getting worse permanently, have you thought about stem cell therapy? I’m treating it like a last ditch effort.
I couldn't have put it better myself! Yes I've thought of Stem Cell therapy but it doesn't reverse the damage which has already been done. My understand is, it re-boots your immune system making it function correctly. I'm not sure I fancy the AGGRESSIVE Chemo to kill your immune system though prior to receiving the stem cells. The cost is astronomical as well.
@@NeilBradleyMS Yes, it doesn't reverse it, but it can perhaps help you from getting any worse over all? I don't know, it's a lot of BS to consider honestly. What meds are you on? You're right about the chemo, seems like everything with this disease wants to kill you--short of the actual disease itself. It just sort of makes you wish you were dead. Sorry to be so morbid, I find that dark humor is an ironic light with all of this haha.
Hi it’s Teresa here on Neil’s account, I just wanted to add something to this thread, hope you don’t mind. Sometimes being morbid as you put it or being flippant, is the only way to go, nobody can be full of the joys of spring all the time. I find some people don’t understand my humour, for example..... I say to Neil “Do you want scissors in your head, or are you tired of breathing” people seem to think I’m being serious. Neil’s the love of my life , we are on the journey together, yes it hits rock bottom sometimes BUT...... the only way is up. His smile melts me, so my weird sense of humour and the death threats keep us going 🥰👍xxx
@@NeilBradleyMS Hi Teresa! I LOVE this, haha, I only hope to find a partner so humorously supportive one day! I alarm my family daily with my humor, they think I'm serious too especially when I talk about cutting off a limb or something since it's numb anyway 😂 if you can't laugh about it, what's the point?! you two are so lovely, he's very lucky to have you 🧡 stay cool, both of you (heheh get it?) 😎
Hi Anatolia, I'm not on ANY meds at all which I'm sure is going to surprise you (apart from codeine for back pain). I used to be on a nerve pain killing drug called "Pregabalin" but I stopped taking it. I soon came to realise that this class of drugs which slow down electrical activity in the brain (effectively turns the power down) also worsens my mobility. I've been on Copaxone for two years during 2014/15 which now I realise did nothing. By the way, I don't think you're morbid at all.. I happen to agree with you. It makes you feel, well if this is what I've got to put up with for the rest of my life (potentially another 40 years) what's the point? I also think to myself, there better be something else at the end of life to make it all worth it!!!
Hi Alexis, I have an MS diagnosis which was given to me in May 2013. However, recently my Brain MRI scan is clear, my Spine MRI is clear, and so is my Lumbar Puncture.. all clear. So This is why I've recently been sent to a Professor of Neurology for a second opinion. I need some further tests, but he seems to think, and it's not official yet.. that I've got a rare condition called "Neuromyelitis Optica Spectrum Disorder (NMOSD)". So I'm in the process of being re-diagnosed.
@@NeilBradleyMS Thank you for the reply, and it is horrible that you can't have access to the IV steroids. It's not like you are asking for some highly addictive narcotic. I am sure Teresa understands completely. I hope you get some answers soon, God Bless you both!
Hi Neil, have you thought about going to the hospital? I’m not sure how the health care system works over there, but in my opinion you are declining so fast you need immediate interventions! I sure hope you get some help soon
Hi Lynn, yes I have to be honest.. I considered going to A&E (UK version of ER) but I feel my condition is too complex and they wouldn't really know what to do with me. Last time something like this happened I was admitted and kept in, something I want to avoid at all costs. I don't know how I would cope because I have so much difficult staying in my own bed for more than a few hours because of extreme pain. Not sure how I'd cope all night at hospital, it would be very traumatic. Not to mention all my bladder issues, which is another story!! (head in hands). I hope all is as well as can be with yourself Lynn.
Maybe you need to be a bit pushy with your Professor's office in telling them how crucial it is for the Professor's review letter to be sent so that you are able to receive a round of IV Steroids ... Love to you both, thanks for sharing!
Hi Dianne, I've been trying to continue with NeuroPhysio exercises I was taught.. but recently they have become very difficult and I simply don't have the energy to do them anymore. I still try though every now and again.
Yes absolutely right Dee Dee, the “not knowing” is the worse thing. I’ve gone from full strength to only being able to walk a few meters in 8 years. It scares me to think how I will be in another 8 years. I don’t like to think. I expect you have very similar thoughts.
Hello Neil, it is my 1st time to watch your channel . I am also PPMS DSLL 5 I have the same fears as you have. Dealing with future uncertainty every single day. I am wondering what is the role of medicine? If you, I and other ms patients are following instructions and taking steroids but keep worsening? Why the stupid medical community keeps prescribing the same useless drugs? I am losing my life every day. They know ms medicine is no use why they do not declare their failure and stop advising us. Have you tried dieting? Whales protocol? Supplements? Physical therapy or stem cell treatment? Thank you.
I feel the same, loosing a little bit more of my life every day. It’s horrible isn’t it. My diet is extremely healthy, made up of a lot of fruit and veg, very little meat. I don’t seem to eat much these days anyways. Tried supplements, CBD Oil done it all. Nothing works for me, occasionally I feel I’ll be getting some results only for them to be dashed a few days later. The MS DMT meds are designed to slow down the disease and I think they can be quite effective for some people. I looked up my EDSS level and mine is 6.5, I also noted yours at 5. Steroids are the ONLY thing I respond to albeit a little bit. They must be reducing inflammation in my spinal cord because after about ten days of having them I see slight improvement in my balance and walking, but to me this is massive considering how disabled I am now. I’ll take anything. I’m so pleased to hear from you, and thank you for watching my video. Please consider watching some more of my recent ones and maybe subscribing. You may be interested to know they now don’t think I have MS, it’s not confirmed yet but they think I’ve got Neuromyelitis optica, which I feel is even more sinister. Take care.
Bar stool near the sink Teresa washes pass to you you dry You reminded me that its the time of year the heat and most likely its not that we’re getting worse If you sat in a chair and kept Teresa company maybe you could read her some of the newspaper or just chat Teresa loves you for better or for worse
Thank you SummerLady, I may well have to resort to a seat in the kitchen if I want to help. I have difficulty trying to accept the things I've always done with ease though, so this is why I keep trying. Today is much better for me, now that the weather has cooled down somewhat.
Neil Bradley I know Its hard when not that long ago you could do everything When I read about you we have most of the same symptoms and I go through my day I know you and everyone in your comment section are all fighting the good fight too
Hey, Neil, this is rough. I hate everything about MS, but you are tough and kick its arse. You have a fantastic, lovely wife and I admire your spirit. Keep going and know that you have a UA-cam family that will be with you every step of the way. All the best, Neil.
Thank you Steve, both Teresa and I love all you guys on UA-cam and respect every one of you for following us on our channel. MS is very tough, and it's pretty difficult for me at the moment going through a re-diagnosis to possible NMO. Thanks for the message Steve, and I hope you're as well as can be at the moment my friend.
Good evening Neil and Teresa, I just wanted you to know that you have been my biggest support over these last few weeks. I am in the middle of the whole diagnoses process, iIhave a spinal tap very soon then back to the Consultant. Your straight forward, calm presence has given me such comfort as there is no one that I can talk to about all my symptoms. I feel sure your balance and strength in your legs will improve when your medical team call you in. I am so frustrated waiting for appointments. Teresa and you are my such a wonderfully kind couple, he,e care. X
Dear Sue, thank you so much for your lovely message. We are so touched that we have been able to give you some really good support over this last few weeks. I was actually diagnosed with MS back in May 2013, but now I'm also going through a re-diagnosis process once again. And yes, it is VERY slow going and very distressing. You may already now this, but I have videos on my Spinal Tap process and how I coped/handled it. This may be helpful to you further sue.
We are so sorry to hear that you've had nobody to talk about your symptoms, this is just terrible to hear. I'm not sure how I would cope without being able to talk to Teresa about "what's happening today!" .. if you know what I mean.
Sue, if ever you need to talk to somebody about your symptoms please contact us as we would be more than happy to chat with you.
Look after yourself - Neil & Teresa x
Hi Neil. Thank you, as always, for sharing your experience. I hope you find some relief soon. I very often sit on my rollator and wash up or cook. Without my chair. I would be on the floor, too. Being able to do things is rewarding to me, so I figure out how to make it happen.
I hope you know how much your videos help us.
I can totally relate to the rewarding side of it Jane, me too! It makes me feel like I can "still" do certain things and give me that feeling of accomplishment. Thank you for your message, and I hope all is well with you Jane.
Dearest Neil. I’m sure you’re missing being Theresa’s strong protector but marriage is sacred and I’m sure she loves and adores you regardless. I’m getting scared now too. I can’t walk some days (most) my knees kill me to get up off my chair (my lift chair is coming soon yay) and I can’t even lift my left leg out of the car. I have to pull it out with my right arm. My left arm is crazy with a mind of its own. Mimicking the right and swelling.the deep bone pain on my left side is debilitating- I just want to cry sometimes. I tried standing at the sink to cut up a chicken one pot stew (yum) and my back and knees just went. My neuro cancelled my appointment after waiting 14 weeks as he had a family emergency. I think I’m going to just go to an ER public hospital and say help. Thinking of you - you’re both so lovely. Take care of each other. Andrea in Brisbane Australia
Hi Andrea, that is just terrible being cancelled after 14 weeks.. I appreciate it was a family emergency but surely they are obliged to get you back in faster considering the circumstances. Lets hope so. I'm sorry to hear of all your pain and mobility issues, you're not alone. When getting into the car, quite often I cannot lift my left leg into the cabin, I have to lift it with my hand also. It's very disturbing having to do this because in the past we've just got in and out of the car without thinking haven't we right? Good to hear you've got a lift chair coming, I hope this really helps you. As for standing at the sink, I'm totally with you there. For me, it's a case of I done it for years and years, so I want to continue doing it. But all of a sudden I'm finding these things difficult but I'm reluctant to give them up. You look after yourself Andrea.
I’m trying to find acceptance. It’s so darn hard. My heart goes out to you. Hang on mate - hopefully we’ll all get a break soon. 💖💖💖 from Andrea in Brisbane 💖 to you too Therese. I look forward to your next vids.
Your videos are so inspiring!!! What you say had so much meaning to me. There are solutions for our condition. But yes it will never be the same again. So let us be creative and look for new ways of doing the same task✌
Thanks Mike, that's kind of you and of course, you're absolutely right! Take care.
Hello Neil and Teresa,
I have been following you for about one year now.
My brother got diagnosed last year for PPMS
He lives in Holland and I moved to the US in 1985 so lately I have been traveling more to see my family and my brother.
It was very difficult to see my brother in this condition. He can barely walk to keep his balance and everything you do is really a struggle.
His wife left him last year and I guess she couldn't cope with taken care of him after being together for 23 years.
He is alone and I feel so bad for him. My mother lives about a mile away from him in a nursing home and she has Alzheimer.
She is almost at a point she will not recognize any of us.
It takes my brother over 1 hour to walk to her place while a regular walk will be about 8 minutes.
He wants to do it while he can because it will give him some exercise. I'm not sure if is safe having so much trouble keeping your balance.
I know it is hard to deal with this illness but what got me is that you have the sweetest, most kindly and loving wife who does everything for you.
Try to keep the glass half full no matter how bad your day is.
Clemens
Hello Clemens, and thank you for your message. I'm so terribly sorry to hear about your Brother with PPMS, this must be very difficult not only for him, but also to see for you. I often think about how difficult it must be for my brother watching me decline and not being able to do a dam thing to stop it. Like Teresa, my brother helps me a lot around the garden when I need him, nothing is too much trouble for either of them.
I'm also really sorry to hear about your Mother having Alzheimers, this is a terrible condition and must be extremely difficult not only for your Mother but the rest of the family to cope with. Life really does feel so unfair at times doesn't it. Hat off to your brother who made the walk to see her though, he did good!! I can totally understand his reluctance to use technology to help him go from A to B, I am like this also.. wanting to continue to use my legs for as long as possible.
Thank you for your lovely words about Teresa, she is my rock and I'm not sure how I would cope without her.
I really appreciate your support on my channel Clemens.
Take care,
Neil.
Hey Neal, I'm here in Brazil sending good vibes for you! You're facing hardship but you look very strong and resilient! Wishing the best for you and your wife!
Thank you so much Carlos, that's very kind of you.
From the Eastern Shore of Md. Sending my love. I definitely understand your pain. My MS effects my left side as well. Rain bothers me more than heat. Yesterday it rained so bad. Leaving working and having to walk no more that 40 feet from our office door to my car was SO difficult. It's almost the consistency of a robot moving. I'm still blessed but sometimes it can be almost embarrassing. Just hang in there. Your in my thoughts
Hello Natoshia, and thank you very much. I totally understand your difficulty in walking to your car. Your description of a robot is perfect, it’s the same for me. My back and leg muscles are as stiff as a board. I’ve not noticed any change with rain, but yes definitely the heat effects me. When you’re struggling with the walk to your car, do you feel you’re being watched? Sometimes I do and I really dislike it. Stay strong. 🙏
@@NeilBradleyMS I do at times. You have a good Sunday Neil....thanks for listening
Natoshia Purnell Anytime, and you too.
It's nice to see you again and I hope that you get the treatment that you need, I have times when I feel very frightened. The whole M,S. thing is so unpredictable. I try to stay positive and count my blessings but there are dark days when I feel sorry for myself. Anyway, take care of yourself and good wishes to you and Theresa.
Thank you Silvana, I can very much relate to your fear.. I also have a lot of very dark days. There is absolutely nothing wrong with feeling sorry for yourself, you have a chronic illness, not only that you have a Auto-Immune disease! You are entitle to, you can join my club :) Good wishes to you also, take care of yourself. Best regards - Neil & Teresa.
I really understand Neil. It has been over 20 years since I have cooked a meal or done the dishes, or shopped etc. The only house work I ever do is sort the washing. I can not look after myself let alone anyone else. I must live with the support of carers. It is not ideal. But not having outside support is worse.
The thing though with you is you know there is something that can help and you aren't getting it and the system doesn't take your suffering into account. I am sure you will improve somewhat when the heat subsides.
Meanwhile you must stew and that is very hard.
Hi Willo, and thank you. It's just horrible not being able to do things you've done for years, isn't it. So Sorry. Yes, you're correct I'm pretty dam sure I would start to feel much better if the "system" would work a little faster. Fortunately I'm feeling bit better today than when I shot the video, but then its not so hot. Love to you - Neil & Teresa. x
I´m with Teresa here - I have never for one second thought you were moaning. Ever. Expressing your (very understandable!) fears and anxiety is definitely not moaning. I applaud you for being open and honest about what you´re going through and I assure you it´s helping others out there, including myself, because I can relate to a lot of it. So thank you.
I am very sorry to see and hear that you´re struggling so much with your mobility. It does look like it takes a LOT of energy just to get from one end of the room to the other. Like you say, the horrid heatwave isn´t helping. I don´t know if there is a chance that you will feel a bit more mobile once it cools down in the next week´s time, but I hope so.
I also hope the professors, doctors and nurses will get their fingers out of their asses. I know it´s vacation time, but they have kept you waiting for so long now. C´mon people!
Take care and say hi to Teresa from me.
Hugs and thoughts.
x Rikke
Thanks for this Rikke.. it's always nice to hear from you. Yes, I'm feeling a bit better now that it has cooled down. It's actually only 15 degrees out there today, and raining!! Compared to 36 degrees last Thursday, crazy weather. I'm giving it a bit more time for the Prof to write this letter and then I'm going to start chasing. The "system" is just under so much demand, it's just a very slow process unfortunately. Take care - Neil & Teresa x
Neil, my dear brother. I can only imagine the pain u are going through and no, u are not moaning at all. What u are doing is very normal. But I am awfully sorry that u are suffering :(
Not to mention I know you're a gentleman, like, it's in ur nature to open doors for people especially for ur loved ones, carry heavy stuffs or get them safely to their doors etc etc
I think the one thing you've gotta carry on doing is that u need to just always do the best u can do, no matter what 💪 Try to not feel guilty about it because it isn't ur fault.
Also I think you're very blessed u have Teresa. She's a very adorable, courageous and kind hearted woman 😍 There are some truly nice and noble people in this world with good hearts and I think ur wife is definetly one of them. I also hope she is doing ok 🐞
I know the hot weather is making u feel terrible like u are going through hell or something but plz keep on going Neil. Never ever give up. I believe u will be ok one day. Chin up 🕹
Regards Adam.
P.s. please do not feel obligated to respond 🌻❤🌞 please take care.
Dear Adam, thank you so much for your lovely words and inspiration. I've just read your comment out to Teresa and we are both so touched. You said "Try to not feel guilty about it because it isn't ur fault." and I've never really thought about it like this before, well I don't think so. But it's so true, it really isn't my fault.. I have absolutely no control over this situation. All my life I've written computer software, I can build computers and take them to pieces, I can solve complex computer problems .. but do you know what I find so frustrating, I can't fix myself!! Teresa is one in a million, I'm not sure what I'd do without her, we were definitely meant to be together. You wouldn't believe we've been through over the last 30 years, and survived!! Take care Adam.
Hi Neil. I'm sorry to hear you're struggling so much. With regards to your frustration about not being able to look after Teresa in the ways that you want to...from my point of view as a woman, as long as she knows she has your love and you are a kind, honest and decent human being she will care for you regardless of your physical abilities. She's happy you are by her side.
I find a cooling scarf really helpful to keep my core temperature stable/cool as it cools the blood going to and from your brain. They are available on Amazon and not expensive. I soak mine for 10 mins and it stays cool for hours and enable me to carry out my house chores much more comfortably. Hugs
Thanks Becky, that's very kind of you to say. We rarely get temperatures as hot as it was the other day in the UK, but I feel I need to be prepared. The cooling scarfs looks really good, so I've just been on to Amazon and added some to the basket. Teresa also thinks they look great and will also use them. Thanks Becky.
hi neil, I'm so sorry your having a hard time of it. I have no doubt this un precedent heat wave is definitely enhancing your health issues. Hope these tips I give you will help. Use a house hold fan and place next to you. Take a water spray type you use for your plants and spray this into a moving fan ( on mist setting) this will blow cool water into your face. Try freezing a scarf and place around your neck to cool you down. Also wrap wet damp tea towels around your wrist. Try placing your feet in cool water. All these will help you cool down and feel more comfortable. There are also cooling vests on the market. 1 is basically ice packs inside a waistcoat like jacket. the other is more on a tunic like dinner ladies wore. This one you soak in cool water then ring out and wear. Between the cool air and the damp tunic is meant to help. Hope some of these may help you xx
Thank you Kim for those very helpful and useful tips. Teresa and I have been sat in front of two fans the other days when it was so hot which helped loads. I'm feeling a lot better now the weather has cooled to 15 degrees today believe it or not. That's UK weather for you. lol. I'm also in the process of ordering some cooling scarfs (towels) which should help a lot also for next time. It's such a shame because I've always enjoyed the warm weather, slowly but surely i feel everything is being taken away from me. It's horrible. xx
I'm so sorry for your worsening condition. Maybe soon they can find some type of medication that can help. I appreciate all you do for sharing your life with all of us who share the same disease and varying symptoms. Have you thought about CBD or is it banned in the UK. I've had some success with it in eliminating some of my pain symptoms.
Hi Matthew, and thank you. Yes I’ve tried the CBD in varying strengths and I’ve spent a fair bit on it. Unfortunately to no avail though. A lot of people say it helps with pain and spasticity, for me however I can’t see any difference. That isn’t to say it won’t work for others though, because it’s got such good reports.
You're not moaning. You tell it the way it is. Major respect to you both
Mike moon Thank you so much Mike, that’s very kind. I pride myself in keeping it real.
Neil it’s awful to see that’s you're suffering really badly at the moment, if it’s any conciliation just remember you’re not the only one my friend , this recent heatwave has been relentless, my legs have been feeling like two heavy concrete poles , and I’ve had more problems myself just trying to move around the house , lol !!
I can completely understand you’re feeling scared anyone in your position would be , you’re trying your best to cope with all these weird neurological symptoms and your not on any medication to help . I hope you get booked in soon for any further tests that you’re waiting to have , and then I hope you get some steroids and an ongoing medical plan with medication etc . I’m keeping everything crossed for you. In the meantime hang in there , I know it’s bloody hard , and keep reaching out to all of us cos we’re all here for you ! Stay strong Neil , take care , Grace x
Ps) do you have a contact number or email for the professors secretary /pa... it would be good to let them know that you’re really deteriorating and to see if they can get you booked in quicker.
Hi Grace, and thanks for your message. Oh yes, I can totally relate to your legs being like concrete poles. I often describe mine as being set in concrete, because if feels like these are being squeezed as well as heavy. Thanks, hopefully I will get some treatment very soon. I'm going to start chasing if I hear nothing in the next week or so. Unfortunately I won't be seeing the Professor again because he was only for a 2nd opinion. I hope this message finds you as well as can be Grace. x
I know it’s difficult Neil, but try & keep your spirits up ! I was diagnosed in 2003 & had a stick your head in the sand approach to whole Scenario, its only as things progress that the impact of this demoralising condition on everybody involved hits home. It is not easy to take a step back & let others carry out the tasks that you feel are your responsibility! The effects on your self worth & confidence are a bitter pill to swallow, however if your family are able to help then in my humble opinion you should let them. This is a cruel turn of fate & if you can free some of your energy for tasks that bring you some enjoyment then that’s all wee can ask until a miracle cur e is found.I wish you all the best and hope you have some good days soon 👍
Thank you Gordon, and I couldn’t agree more.
Sending love your way. I'm only just beginning my journey. I've been having awful symptoms for a while, and I'm finally being sent for an MRI (it only took God knows how long, and an awfully nasty ER doctor before I got the courage to talk to my GP). I am lucky enough to still be mobile, but this last fortnight I've really struggled with the same feelings as you describe in this video. I'm a single mum - I escaped from an abusive man with my children, and I had such dreams for us...and now I have so much guilt when I am forced to ask my kids to fend for themselves for an hour or two while i (try) to nap - if the spasms will allow. I am so glad that you have such wonderful support from Theresa. Hope it all eases for you soon.
Hey there😊 Thank you so much for your lovely message. I’m so pleased that finally you have been listened to and are being sent for an MRI scan. It’s amazing how many people on my channel have said they struggle to get Docs to listen to them and take them seriously. So you’re not on your own with this. I’m sorry very sorry to hear you’ve been in an abusive relationship, this must have been terribly hard for you and the children. Thank goodness your safe now. I bet you’re thinking dam, it’s just one thing after another now you have all these horrible symptoms. Just remember, you are not alone!! Ok, we are all in it together.
Not sure how many of my videos you’ve watched, but I’m actually in the process of being re diagnosed. I no longer tick all the MS boxes after being diagnosed with MS in 2013.
You hang in there, and anytime you need to chat give me a shout.
Take care - Neil.
Could you get a script for oral prednizone? sounds like you need some maintenance treatment now.
Tom has a good suggestion, I think
You're right there Tom, I've had oral Steroids before but they've not touched me. I only seem to respond to the IV steroids which seems to be stronger. Thanks for your concern.
Definitely a good suggestion, I've tried oral steroids but they don't seem to have much of an effect as the IV ones.
Hello from California. I am praying 4 u both. I'm struggling and scared 2. I live alone and these hot day are wiping me out. Lost the ability 2 drive so taking the bus 4 appts and shopping. Trying 4 some help w/wheelchair but drs dont give me much hope since i do kive in a small placeer the years i have learned how 2 get around g and hanging on futniture doorways etc.
Neal i am thinking and hoping once u c ur dr again u can finally get help!
Hello Mary, I'm so very sorry to hear that you're also scared. These diseases have us at our wits end at times don't they. Sometimes, I think the Dr's should spend a day in our shoes, it might give them (or some of them) a good idea of what we have to deal with on a daily basis. I hope you manage to get your Wheelchair. I hang on to furniture all the time, I literally cannot move around without holding on to something. I only said to Teresa last night, it's been years since I climbed the stairs without holding on to the banisters!
I just have to leave a comment. ( My first time!😊). I am 56, have MS, ( I was first diagnosed with Transverse Myelitis) and I know how you feel. It is the sadness that effects me more than the pain. The longing for energy to do things. I know that it does me no good to let it get to me, but, nevertheless, it does. I waiver between mad and sad. Some days are great though, and I think I hobble between those. You are not alone, and I think it's wonderful that you reach out through these videos. You are a wonderful person!
Hey Shelly, well thank you very much for your comment and welcome.
I was also first diagnosed with Transverse Myelitis back in 2007!! Later to be diagnosed with MS in 2013, now I’m being re diagnosed.
I completely understand your sadness, the longing to be able to do things you’ve done for years but simply don’t have the strength or energy to do them now. It’s is precisely the same for me, terribly sad and upsetting. For example this time of year is particularly upsetting for me because I see everybody, friends and family all going away on holidays and days trips, really enjoying themselves. I can’t do any of these things now, it’s soul destroying and very depressing. I’ve also gone through the mad stage, but I don’t get mad now ever because it just seems to makes things worse.
Thank you so much for writing Shelly, and for your kind words. Please stay in touch. 🙏
What a pleasure to hear from you, thank you! Shelly
Shelly Pressnall Like wise Shelly. 😊
@@NeilBradleyMS I wanted to tell about Dr. Steven Gundry. You can read and listen to his Utube videos and decide things for yourself. I'm giving it a go, and have been on his plan for 19 days. Too soon to to know, but I just wanted to share it with you. Shelly
I am disappointed that I just missed your "live" video. That's what you get when you arrive late to the party. Sorry you're feeling rather shitty at this time. Your explanation of what you are dealing with as you attempt to stand for any length of time is spot on with what I too experience many times. "spot on" Although I appear to experience much the same as you I am aware that the levels of which we experience these things may be quite different. In saying that I only wish to encourage you/us, if only temporary. And I too feel "inadequate" at times I "should" be helping my wife but am unable. That just kills me.🙁 PS....My wife Tammy, just walked into the room and said "we need to take a vacation in the UK and visit Neil and Teresa" I am so down with that.🇬🇧😄 See ya.
Hey Lee, ahh sorry you missed the "live" video, it was actually pre-recorded.. I scheduled it to premier last night leaving 24 hours (9pm tonight). I think next time I'll leave a few more days for people to spot it.
It was so nice to read your message, and I can see that you TOTALLY "get it" as to how I'm feeling, yes the feeling of inadequacy is just terrible when I see Teresa struggling with heavy bags. The frustrating thing is, I've got full upper body strength and I'm physically stronger than her, I just can't walk with anything even slightly heavy. My balance is just completely gone, nothing there and my legs are so terribly weak.
Your wife Tammy sounds very switched on :) With the wonder of the internet these days, we can still chat (video) with thousands of miles in between. Maybe one day we should set something up.
Take it easy my friend.
@@NeilBradleyMS you need to find other things that will help make things easy for the both of you I think this may help
Helping Hand Deluxe Stair Climber Cart in Silver | Folding Cart Holds Up to 60 lbs - Great for Shopping, Camping, Sport Events, Much More its on amazon for $ 34.98 it would be worth it mabe check it out hugs to u and Teresa luv u both
Sending good thoughts your way Neil, in hopes that you can get the steroids needed to feel better. You shouldn't have to fight so hard to get the meds you need, when you need them! Been through it myself, and I feel your anguish. Take care, hugs to you and Theresa.
Thank you Rona, it’s just such a waiting game and there’s nothing I can do about it. In the meantime I just get worse and worse.
I’ve literally just been outside on our patio and spent 20 mins sat in the lovely warm sunshine. However now, I can hardly put one foot in front of the other because I’ve heated up. Something else that’s been taken away from me. I’m so tired of it all.
Sending some hugs 🤗 right back to you there, from Teresa and I.
It does seem as though ms is out to rob a person of every joy in life! Seems your Professor is moving at a snails pace at getting his letter out to your ms nurse and GP! Hang in there😃, hopefully relief will be coming soon. Hugs to you & Theresa.
Very supportive wife...
Praying and standing in the gap when you need us!
Thank you so much Sonya, that's very kind of you.
Hi Neil, so.sorry to here how badly you are suffering. I'm nowhere near as bad as you with mobility but identify massively with the feeling of fear. I had my head and full spine MRI on Tuesday and hope.its going to be able to find out what's going on. You and you wife are fab and I love your video's they even make me feel like doing some if only for myself. But I fear I'm wouldn't be able to emotionally as I get so upset and the fear and not knowing is a major factor in that. I do hope you feel better soon and get some answers and treatment. Take care.
Hey there.. thank you for your kind words. I want you to know that I can completely relate to the fear you are experiencing. You are not on your own!
It’s very difficult because certainly for me, I see myself getting worse almost by the day. Take this morning for example, my wife and I have just been out for breakfast. When we’d finished, she went to take the rubbish, whilst I got up. But, even with a crutch I couldn’t move off the spot because my balance is completely shot!! I was stuck where I was until she returned to help me. This is so disturbing for me, because out in public there are so many people going about there normal lives without any issues. It could be me being paranoid, but I can feel the staring and hear the thoughts.
It brings me great joy to hear that our videos give you a little motivation. It’s extremely difficult gathering the energy to do anything when you are struggling with neurological issues on a daily basis. You can do this!! I set myself a task each day which I try and complete, this also gives me a sense of purpose and achievement. Give it a try, it doesn’t have to be anything too strenuous.
The feeling of fear is VERY real.. in eight years I’ve gone from full power to how I am now. I’m scared of being alone in public, I’m extremely lucky though because I’ve got Teresa who is a God send. I worry all the time about the future.
Let’s hope you get some answers soon when your results come through.
Here if you need a chat.
@@NeilBradleyMS hi Neil and Teresa (you are blessed with Teresa she's an Angel, I feel so lucky to have such a good supportive family too) thank you for.your reply I know I'm no.where near to.your level of difficulties but its good to know that there are others who have a shared feeling of fear (sounds strange but you know what I mean) this is something I feel many consultants do not understand and in some cases do not appear to care and in fact can make you and what you know you are feeling.invalid. I like you try to do as much as I can and you never know what you're going to be able to do from moment to.moment let alone day to day. I thank.you and Teresa again for sharing your experiences which.I hope.you both know are very supporting in such difficult times especially the journey of trying.to find out the cause or causes and trying to get the correct treatment. I understand you have had many diagnoses and are still on.your journey trying to get to the bottom of what's causing yours which after so many years must be so frustrating but your fight is inspirational and a.reminder that we are not alone. I know.you spoke.recently about doing a time.line. this is something I am interested in very much as I don't know about you but some symptoms can be so strange and at times difficult to explain. I have complied a list of symptoms that luckily I had been texting to my daughter whilst they were happening to have some sort of live log of what I have experienced as I initially thought it was all.part of my.TIA but I now know these were not part.of a TIA. So sorry if I have gone on so much, If.you wouldn't mind me asking some advice privately I would.be most grateful. Many thanks once again and sending positive healing thoughts yours and Teresa's way. Michelle.
Hi Michelle, great to hear from you again. And please don’t think you’ve “gone on” it’s absolutely fine. You can contact me privately on Facebook Messenger by searching for “neil.bradley.37”. Look forward to hearing from you.
@@NeilBradleyMS thanks Neil, sorry I don't use Facebook.
Not a problem, feel free to drop me an email at “neil.bradley@hotmail.com” instead.
I'm sorry that you are having a tough time not being able to help your wife. I am not trying to downplay what you are going through, but I am going through testing for MS myself right now, and my neurologist tells me it is not showing up as MS, that he thinks "I am fine". I said, so because you think I am fine, my symptoms will just disappear now? I have a LOT of symptoms. I won't list them off here. But he wanted to know what symptoms I was talking about, so I had to list them off for him. Only then, would he do a couple other neurological tests in the office on me, and order other tests on me (which all have come back negative) to include a lumbar puncture. I will say this however. My walking is nearly as bad as yours. I come close to falling all the time, my knees, legs and back do not cooperate as they are weak, and I have to sit. What is bad for me, is I live alone. I have no one to help me. Well, I guess I have written a book, but you get what I am saying. I am going to ask for a second opinion, see what happens. I will say a prayer for you Neil. I am scared for you. I am scared for me, as well. My doctors don't really seem to care. You have a wonderful caregiver in your wife. Bless you both.
Hello Dianna, thank you for your lovely message.. I'm really sorry to hear that you live alone and have nobody to share your fears with. I'm always telling Teresa what's worrying me and she always listens carefully. I'm very lucky to have her. Anytime you feel like to talking about your issues, we are here to chat if you wish.
Unfortunately there is no specific test for MS, it's a case of doing several other tests like MRI Scans, Lumbar Puncture, taking a history to rule out other condition.. a process of elimination as it were.
The walking is very scary isn't it Dianne, I'm actually a little bit better than on the day the video was shot because it's not so hot.
By the way, if you're going for a Lumbar Puncture, I have a few recent videos on this you may find interesting. I had my first LP in Feb this years.
Take care - Neil.
@@NeilBradleyMS I've had the lumbar puncture, and it came back negative, along with everything else I've had so far. The last test I am to have is the neuropsychological testing - it's a 5 hour test. I will ask for a second opinion afterwards. If they find it isn't MS after that, they *have* to figure out what it it! I can not live like this!
Neil.....you need physical therapy my friend. Maybe a different assistive device. I gave in and used one and it was so much easier. Difficult but easier if you get what I’m saying. Your posture is draining you 🧡 It’s a progressive disease we have to make the best out of life. Not easy!! Love to you both.
Thanks Karen, I've done Neuro Physical Therapy for six months, and it didn't really make much difference. Up until recently I continued with strengthening exercise, even found some more of my own of YT. But I'm just weak now to do any of them, horrible vicious circle. My only hope is steroids now.
Hi Neil. I'm so sorry that you are feeling so bad my friend. I understand my friend. When it's hot outside personally I have to be in air conditioning all the time. Just FYI MS at least for me doesn't like hot weather. I've had my balance go wacky with a right foot fall but I could also get a vertigo attack or a migraine. I find that the best relief I get is by eating popsicles that lower my internal body temperature for a little bit. It doesn't help the balance but it will go away when it cools down. I've had this issue for 3yrs and I just have to deal with it because it's an exasperation of my first 2 attacks so steriods for me cant help. My Drs have told me to be more aware during the summer because my 1st attacks happened during the summer so apparently it's more active somehow because of the heat. Winter however I get stiffness in the legs but not much else. My summers have not been fun time. I can't do anything I usually can so I understand my friend. Mornings are better for me too. By about 300 pm the fatigue sets in and summer I'm more tired as well. So all in all I understand. I get down because I really can't do things with my son or anyone if it's over 70 degrees outside. I feel your pain my friend. I can't help my family do anything and I'm so used to it being me that takes care of things but now I can't so it feels bad. Don't worry you'll probably be better when it's not so warm at least I know that come fall I'll feel better than now. It's going to be 90 degrees today and I can feel it even before it gets 90. I can't explain how that works but I feel like a human berometor. Chin up my friend you are not alone I feel your pain.I hope this helps you my friend. I know it's not fun at all but one thing about MS is it changes everyday. I never know exactly what is going to happen I'm still trying to figure things out. I just keep trying and when things are bad try to find something that gives me some comfort. Hopefully tomorrow will be better my friend. For now hang in there ok? It could change in a day. I wish you both the very best. Thank you for posting your video I thought I was alone with my difficulties with the heat. Thank you. Peace my friend. 😇😇🤔😔🤗😊
Hi there, and thank you for your lovely message explaining the difficulties you have in the heat. I can very much relate, and rest assure you're definitely not alone with these problems. It's very difficult isn't it not being able to do things with the family because of our condition, I find this particularly distressing. This time of year people are planning day trips out or holidays, where as I can't do any of that because I can hardly walk. I'm usually also in too much pain. It really doesn't seem fair when all my life I've just tried to be kind and helpful to others. I almost feel like I'm being punished but why? Peace to you also my friend.
Hi my friend! Hugs through UA-cam to you. Now...Its times like this where I don't like doctors....it's not fair for you to go through this without a treatment plan in place! Take your time when walking, falling now is the scariest thing....I had my worst fall this past Wednesday and I now need to wear a medic alert device as I was by myself. I hope the dr gives you the steroids quick and that you see improvement!! Again hugs to both you and Theresa from NJ!!🤗🤗
Hey there, I'm really sorry to hear you ad a bad fall.. I'm hoping you didn't hurt yourself too badly or broke anything. Yes, I'm aware I'm extremely prone to falls now and I'm so SO careful. The last thing I need is a stay in hospital because, I can barely sleep comfortably in my own bed with all of my pain and problems. I've not yet got a treatment plan because I'm in the process of being re-diagnosed. I still have more tests to go, but it looking like I've not got MS now. I will of course let you know anything as soon as I do by way of a new video. Sending hugs to you also.
Hi Neil & Teresa,
Neil I'm the same as you atm I'm so tired my right eye is still blurred, I go to the eye hospital on friday to get the camera so they can see what's going on,
It was my 50th Birthday this friday gone and I was sent to bed by dave cos I kept falling asleep and dropping things so missed my birthday really, the pain is wearing me out & I'm feeling like I've had enough.
Dave got me a bar stool for the kitchen, it's great cos I can do dishes or cook and I can change the hight as its gas movement, it's a life changer, I think you would benefit from it like I am, anything to make life easier .
My heart goes out to you, its crap being us, we need to fight against it with all our strength, we need a break. Again I have headphones on with no music I think it's just habit now the same as I've had a fan in the bedroom on every night for about 4yrs lol , little things make all the difference 😉,
Love to you both xxxxx
Sue XxXxXxXxXxXxXx 😘😘💜
Hi Sue, Teresa and I would like to wish you a belated Happy 50th. It sounds a bit like my last birthday when I was 46, I was having IV steroids at hospital, I then came home and was in so much pain I just went to bed. I too am feeling like I’ve had enough Sue, so that makes two of us. Your new kitchen stool sounds just perfect. I’ve just been out and sat in the sun for about 20 mins, now I can hardly move because I’ve heated up. Something else I can’t enjoy now. I’m so peed off with it all, I really am. Love to you too xx
Hello Neil, Chris in Albuquerque here. Just wanted to reach out to let you know I am experiencing every thing you talk about in this video. I think I am a few mouths ahead of you in my decline. I am 56 and was diagnosed in 2014. In a years time I have gone from a cane, walker and now wheelchair bound. Like you I cannot stand and when I try I slowly start to collapse which makes shaving, doing dishes or even dressing. Now I am loosing function in my hands. I just did 1.5 years on Ocrevus with no positive effect or improvement. Dr. wants me to switch to Mavenclad which I hope to start in a week or so. Today Friday August 9th is my last day of work for I am going on disability I am totally stressed on how I'm going to survive as I am single and live alone. Let it go about not holding doors for your wife, I can relate about being a chivalrous man but she loves you and she's with you all the way. I was number 116 to like your video. Chris
chris crawford Hello Chris, and thanks for the message. It’s nice to hear from somebody that can relate to everything I put in the video. Not that I’m at all happy about that, because life is very difficult for us both.
Yes, yes and yes Chris.. shaving, doing the dishes and simply just dressing is so so difficult. I normally sit on the side of the bed to put my socks on, yet this morning I couldn’t do it as my leg is to weak to lift. I improvised and laid on the bed doing it that way. Putting my shoes is also getting harder, everything is.
Can’t stand for more than a few mins, I normally shave using the mirror in the hall, but find myself needing to rest half way through.
The slowly starting to collapse thing is so very difficult to explain to people, but you get it don’t you. For me also just standing on the spot balancing is sometimes impossible. My balance is practically nil.
I’m in the same situation as you Chris, as I too have had to give up work. The pain at night stops me from sleeping, and also pain in the day. I am extremely fortunate though in as much our house is paid for (in 2013) so the roof over our heads is secure. When we purchased our house in 2011 both mine and my wife’s health started to deteriorate. At the time we were both working full time and I decided to put every last spare penny into the mortgage, best thing we ever did as now we are too ill to work.
I’m so terribly sorry to hear of your worries Chris, do you live in the UK? If so we might be able to offer tips to help you with the benefit system as we’ve got significant experience with it recently.
Thank you for your 116th like👍, it’s very much appreciated.
Stay in touch - Neil.
Hey Neil! I know all too well about heat sensitivity. I have a cooling jacket and neck ice pack. I live in Florida and has been between 35 and 37 degrees constantly. I can’t go outside without feeling like I’m actually dying. I get weak and my head is tingly and just sluggish. I am going this morning for my yearly mri. I asked to have my cervical and thoracic included so that is why I have to do it on Saturday because its a long one. Do you still take baclofen? It helps me. Also my neurologist put me on naproxen twice a day. That takes the edge off. When you get hot put a ice pack on the back of your neck And that will help. I wish there was something I could do to help but I will pray.
Thank you Patty, and it's lovely to hear from you as always. I've literally just found some cooling towels (scarfs) at Amazon so I'm going to be a little bit more prepared for the next bout of very hot weather. For us, in the UK last Thursday was 36 degrees and it was insane! I said to Teresa I can't imagine what it would be like continually for a few days. But you say where you live this is what it is continually like. WOW!! I hope you're managing to stay cool ok Patty so that your symptoms aren't too bad. Can you believe it's only 15 degrees today, and raining! That's the UK weather for you. I've tried Baclofen, but it makes me much wobblier so I don't take it now. The only drug that seems to help is Diazepam believe it or not, it helps me sleep, helps with legs spasms and "seems" to help my mobility by spoothing out the spasticity a little bit.
Hellos, so sorry I haven’t left a comment on your previous videos. I feel so bad for you. Both you and your beautiful Teresa inspire so many of us. I don’t think moaning comes in to this, you can only do what you can do. My hubby does absolutely everything for me, even on good days. For my birthday this month he got me a disability buggy, I haven’t gone anywhere on my own yet, I collected my 5 year old granddaughter from school, and gave her a ride home, when we were still in school grounds, she was sat on my lap on the buggy and her mum asked why she was looking at her feet, he response was ‘I don’t want no one to see me’ hahahaha ok she was embarrassed but not so much to walk home. This heat is blooming awful, it’s exaggerated every pain throughout my body. I found a high powered fan and a water spray fantastic, I even plonked myself in the Grandbabies paddle pool lol... still it’s much cooler this evening, I hope your feeling better for this temperature drop too... xxxx
Hi Michelle, it's always nice to hear from you.. and please don't feel you have to comment on every video. The buggy sounds great, I had one which came to pieces and fit in the boot of the car. But, it was really difficult to lift in and out, and even harder to put together (it was meant to be simple). So it had to go. I bet your Granddaughter loved the ride on your buggy!! The heat has been a killer, we've been sat in front of two fans lol .. it's much cooler today at only 15 degrees outside, less than half the temp it was last Thursday (36 deg). Crazy UK weather. Look after yourself Michelle. xx
Neil, becareful of those voices in your head! If one is constantly talking louder than the other you need to stop listening to that one. The voice that is saying you should do this and you should do that needs to shut up for a bit.
We all need to be wary of depression so don't let that voice get you down.
Consentrate on how you will make it up to Teresa when you are better and I know you will be better soon.
P. S. A message for Teresa!
Get some hot water in a washing up bowl and take it into him so he can do some washing up. It sounds to me from what Neil is saying that it gets worse just before washing up time which is a bit convenient so sit him at the table and get him to work. 😁
Love to you both.
Hi Ian, thank you for that.. I'm quite familiar with those particular voices, especially when the pain and disability is making me miserable. I'm quite strong willed and therefore I remain firmly in control though. But thanks for that, I know where you're coming from.
As for the washing up bowl, hey you can do one.. don't give her any ideas lol ;-) My secret is out lol. ha ha.
Neil, have you looked into your food allergies? My husband has ms and his symptoms have been helped with stopping gluten and dairy. You may want to take a food allergy test. It is common with autoimmune. I hope you have a break from this horrible disease, my husband says a lot of the same things. You are not alone
Joy Lauper Thank you Joy, I’ve had plenty of blood tests but not food allergy. I don’t eat or drink a lot of diary, and I’m pretty sure I’m ok with Gluten. I hope you and your husband are managing ok. Take care.
Hi neil sorry things are so bad for you ..my father was like you a true gentleman he had lung cancer had the lung out but the other lung had emphysema he was always the strong one and that really took its toll on him .I really feel for you in this video I can see how down you are ..can you apply for a stair lift ..I'm sure you would qualify for one
Hi Grace, ahh thank you for telling me about your father.. I can understand how his illness took a toll on him. Teresa and I have talked about a stair lift many times, but I always hold back. I like to try and keep doing things for as long as possible before resorting to technology. I keep it in mind though. I am however feeling better than I was the other day, now that it has cooled down. Can you believe it was 36 degrees on Thursday here in the UK, today its 15 !! I've just put my jumper on as I'm chilly! Crazy weather.
I hear you, Neil. It must be very frustrating to not help Teresa like you want to, but it probably goes a long way for her to know that you want to. Can you contact the professor's office and ask how things are proceeding, as you are awaiting his report to be sent to your other doctor so needed treatment can begin, as you are having difficulties and would like to start the treatment. Hey, Neil, the squeaky wheel gets the oil--don't be afraid to enquire or at least leave a message for the Prof's office. Good luck to you and Teresa.
Hello Sheri, it REALLY is very frustrating not being able to help Teresa. But as she points out to me every time, I help her a lot in other ways. I think I may well give it another week for the letter to arrive (I'm going to be copied in) and if nothing comes I shall start my enquiries and give them some nudges. Take care of yourself.
Staying cool
Thank you Michelle, I really appreciate all of your comments and input. We read every one of them. I hope all is as well as can be with yourself. Take care.
Love ya Neil
Thanks Chip, much love to also my friend.
I understand completely, same here ,sorry
Hi Chris, sorry to hear your having the same issues as well. You’re not alone my friend.
@@NeilBradleyMS ya, steroids don't help at all ,ocrevus isn't helping ,I feel there's nothing going to help, hopelessness is all I have
For me, I do respond to steroids a little bit; enough to give me a little bit more quality of life. But it always soon wears off which is the soul destroying thing, then I continue down the slippery slope. I know that hopeless feeling. 😔
Hi Neil you sound like me this weather isn't good for me. I am constantly dizzy I walk as if I am drunk
Hello Julie, lovely to hear from you. I don't suffer with the dizziness but I sure do walk as I'm constantly drunk. In fact my balance is practically non-existant, so I know exactly how you feel and what you're going through. Anytime you want to talk Julie, we're here. Take care.
I meant to also add, the heat yesterday was an absolute killer for me also. It's unusual to have temperature of 36 degrees in the UK, it WIPED ME OUT. Fortunatley I'm a little bit better today.
Still waiting on for results on MRI scan it's a long haul so fed up of feeling dizzy all the time. The only time I am not feeling dizzy is when I sit down most of the time x
I hate this fucking disease, it truly is a nightmare. Avoid all hot drinks, food, etc. I live in Texas so I know how bad it can feel... popcicles help, I avoid going out at all costs during the day. If you think you’re getting worse permanently, have you thought about stem cell therapy? I’m treating it like a last ditch effort.
I couldn't have put it better myself! Yes I've thought of Stem Cell therapy but it doesn't reverse the damage which has already been done. My understand is, it re-boots your immune system making it function correctly. I'm not sure I fancy the AGGRESSIVE Chemo to kill your immune system though prior to receiving the stem cells. The cost is astronomical as well.
@@NeilBradleyMS Yes, it doesn't reverse it, but it can perhaps help you from getting any worse over all? I don't know, it's a lot of BS to consider honestly. What meds are you on? You're right about the chemo, seems like everything with this disease wants to kill you--short of the actual disease itself. It just sort of makes you wish you were dead. Sorry to be so morbid, I find that dark humor is an ironic light with all of this haha.
Hi it’s Teresa here on Neil’s account, I just wanted to add something to this thread, hope you don’t mind. Sometimes being morbid as you put it or being flippant, is the only way to go, nobody can be full of the joys of spring all the time. I find some people don’t understand my humour, for example..... I say to Neil “Do you want scissors in your head, or are you tired of breathing” people seem to think I’m being serious. Neil’s the love of my life , we are on the journey together, yes it hits rock bottom sometimes BUT...... the only way is up. His smile melts me, so my weird sense of humour and the death threats keep us going 🥰👍xxx
@@NeilBradleyMS Hi Teresa! I LOVE this, haha, I only hope to find a partner so humorously supportive one day! I alarm my family daily with my humor, they think I'm serious too especially when I talk about cutting off a limb or something since it's numb anyway 😂 if you can't laugh about it, what's the point?! you two are so lovely, he's very lucky to have you 🧡 stay cool, both of you (heheh get it?) 😎
Hi Anatolia, I'm not on ANY meds at all which I'm sure is going to surprise you (apart from codeine for back pain). I used to be on a nerve pain killing drug called "Pregabalin" but I stopped taking it. I soon came to realise that this class of drugs which slow down electrical activity in the brain (effectively turns the power down) also worsens my mobility. I've been on Copaxone for two years during 2014/15 which now I realise did nothing. By the way, I don't think you're morbid at all.. I happen to agree with you. It makes you feel, well if this is what I've got to put up with for the rest of my life (potentially another 40 years) what's the point? I also think to myself, there better be something else at the end of life to make it all worth it!!!
it really hurt seeing cant walk lord bless
I am confused do you or don't you have MS the last video was a scary one,.
Hi Alexis, I have an MS diagnosis which was given to me in May 2013. However, recently my Brain MRI scan is clear, my Spine MRI is clear, and so is my Lumbar Puncture.. all clear. So This is why I've recently been sent to a Professor of Neurology for a second opinion. I need some further tests, but he seems to think, and it's not official yet.. that I've got a rare condition called "Neuromyelitis Optica Spectrum Disorder (NMOSD)". So I'm in the process of being re-diagnosed.
@@NeilBradleyMS Thank you for the reply, and it is horrible that you can't have access to the IV steroids. It's not like you are asking for some highly addictive narcotic. I am sure Teresa understands completely. I hope you get some answers soon, God Bless you both!
Hi Neil, have you thought about going to the hospital? I’m not sure how the health care system works over there, but in my opinion you are declining so fast you need immediate interventions! I sure hope you get some help soon
Hi Lynn, yes I have to be honest.. I considered going to A&E (UK version of ER) but I feel my condition is too complex and they wouldn't really know what to do with me. Last time something like this happened I was admitted and kept in, something I want to avoid at all costs. I don't know how I would cope because I have so much difficult staying in my own bed for more than a few hours because of extreme pain. Not sure how I'd cope all night at hospital, it would be very traumatic. Not to mention all my bladder issues, which is another story!! (head in hands). I hope all is as well as can be with yourself Lynn.
You’re right, not much different here either.
Maybe you need to be a bit pushy with your Professor's office in telling them how crucial it is for the Professor's review letter to be sent so that you are able to receive a round of IV Steroids ... Love to you both, thanks for sharing!
Thanks Susannah, and yes you’re quite right, it’s been far too long. I’m chasing the letter as of tomorrow. Much love to you also.
I know the heat is awful
Hang on
Has exercising become impossible?
Hi Dianne, I've been trying to continue with NeuroPhysio exercises I was taught.. but recently they have become very difficult and I simply don't have the energy to do them anymore. I still try though every now and again.
@@NeilBradleyMS I think you are very brave, and I applaud you.
not knowing the unknown it hurts
Yes absolutely right Dee Dee, the “not knowing” is the worse thing. I’ve gone from full strength to only being able to walk a few meters in 8 years. It scares me to think how I will be in another 8 years. I don’t like to think. I expect you have very similar thoughts.
Hello Neil, it is my 1st time to watch your channel . I am also PPMS DSLL 5 I have the same fears as you have. Dealing with future uncertainty every single day. I am wondering what is the role of medicine? If you, I and other ms patients are following instructions and taking steroids but keep worsening? Why the stupid medical community keeps prescribing the same useless drugs? I am losing my life every day. They know ms medicine is no use why they do not declare their failure and stop advising us.
Have you tried dieting? Whales protocol? Supplements? Physical therapy or stem cell treatment? Thank you.
I feel the same, loosing a little bit more of my life every day. It’s horrible isn’t it. My diet is extremely healthy, made up of a lot of fruit and veg, very little meat. I don’t seem to eat much these days anyways. Tried supplements, CBD Oil done it all. Nothing works for me, occasionally I feel I’ll be getting some results only for them to be dashed a few days later. The MS DMT meds are designed to slow down the disease and I think they can be quite effective for some people. I looked up my EDSS level and mine is 6.5, I also noted yours at 5. Steroids are the ONLY thing I respond to albeit a little bit. They must be reducing inflammation in my spinal cord because after about ten days of having them I see slight improvement in my balance and walking, but to me this is massive considering how disabled I am now. I’ll take anything. I’m so pleased to hear from you, and thank you for watching my video. Please consider watching some more of my recent ones and maybe subscribing. You may be interested to know they now don’t think I have MS, it’s not confirmed yet but they think I’ve got Neuromyelitis optica, which I feel is even more sinister. Take care.
Sometimes you just have to say it out loud - THIS SUCKS! I understand.
Hi Elizabeth, yes indeed .. it really does SUCK!! I hope you're well.
Balance is awful
Sorry to hear its not going so good. Hope you can get a course of steroids.
Thanks Eliane, I hope so too.
Bar stool near the sink Teresa washes pass to you you dry You reminded me that its the time of year the heat and most likely its not that we’re getting worse If you sat in a chair and kept Teresa company maybe you could read her some of the newspaper or just chat Teresa loves you for better or for worse
Thank you SummerLady, I may well have to resort to a seat in the kitchen if I want to help. I have difficulty trying to accept the things I've always done with ease though, so this is why I keep trying. Today is much better for me, now that the weather has cooled down somewhat.
Neil Bradley I know Its hard when not that long ago you could do everything When I read about you we have most of the same symptoms and I go through my day I know you and everyone in your comment section are all fighting the good fight too