Hi guys! I completely agree with the mobile dismantling drama. My family and I went on holiday and we rented a van to be able to accommodate 3 units because there's several of us that have mobility issues. It was decided to not waste time and strength. We would leave the units upright in the back of the van, with the brakes locked on, snugly against eachother to keep them stable once the van was moving. That only solved part of the problem. Those things are heavy! No one was willing to pull them up and carry them down to the floor everytime. The groans and staring at the back of the van was expected. I suggested rock, paper, scissors 🤷🏻♀️😄 A team of either 2 or 3 people had to work together per unit. If we had the strength on our legs, arms and backs to be able to go thru all that, we wouldn't need a unit in the 1st place right? 🤦🏻♀️😉 But, we did it...took several tries and a descent amount of time everytime but it was done. Go, team! 🥳 😁 I'm sorry you haven't received a word from the hospital. I know how disheartening it can be. When I was told by a friend who is also a nurse, that I should limit my daily walks, I was visibly upset because when I was in school I trained to be in athletics and running. The docs told me last year that because of that training and mindset I was able to keep my strength up. Once I was told I had to consider staying at home more and to be aware of my "new" physical limitations I cried. But, 2 weeks later I was walking little by little building up my resistance again. I just couldn't see myself staying away. Whenever my left leg starts acting up (that's the troublemaker of the two), and my lower back and neck feel heavy and uncooperative I ask, if possible, to be taken to the nearest park or to the pier. My loved ones can't always help, but when they do, they let me go sit by myself without asking questions. I keep praying that you find a treatment that can trully make a difference. Please know that we are hearing you Neil, and we understand. 💜
Hi Jay, sounds like you found the perfect solution when you went on holiday. As for keeping your strength up, yes it’s important to be aware of your new limitations for sure, but my advice would be to keep your muscles as strong as possible by any safe means you can, whenever you feel well enough. Like you, I was always very active in my past, and to go from that lifestyle to this very inactive one is a bitter pill to swallow. Until recently I used to do regular exercises (I still try) to keep my muscles going, but I’m so weak now I literally just don’t have to strength. I really appreciate your message Jay, and of course your support. Be well my friend. 🙏
Hi Neil, thanks for the update. Physical limitations can be so isolating which is not good for us! I hope you have luck getting some sort of scooter that works for you so you can be more engaged and go out and about👍. Love to you and your wife from Michigan 🥰
Thanks Lynn .. yes indeed, I'm feeling more and more disabled everyday. My wife and I have been having breakfast out Saturday morning for as long as I can remember. But this last few weeks, the walk from the car to the restaurant (only about 50 feet) has been getting more and more difficult, and this morning it was so hard!! It seems it's time to give that up now as well. Sometimes I wonder when is it going to ever end. I have to say, the thought of a scooter does give me a bit of excitement, it will be so nice to have a bit of independence back. Love to you also from the both of us. x
Hi, Neil I'm the same spine is very weak and legs, know how you feel, it was nice to see you in Andy's stream, I saw your garden lady gnome in supermarket last week made me think of you both, have a good day.
Hey Marcia, yes I’m I really enjoy it in Andy’s live stream.. I’ll definitely join again if and when the timing is right. Ahh yes, the Gnomes.. we got ours from Tesco. Love them.
All supermarkets now have wheelchairs and electric scooters in them now, I just take my own wheelchair, I'm past caring now I used to be embarrassed but I've realised I'd be more embarrassed if I fell over and couldn't get back up! X
I don’t blame you Sue, I see where you’re coming from. The supermarket scooters for me aren’t suitable because the seats don’t have high backs, to support my back.
Glad you have decided to get a scooter with a lift , and you can get the ones that attach right to the back of your auto. You will have sooooo much more mobility, and believe me you will feel better mentally and physically having more of your independence back in whatever form it may be. It's great to have a lovely soul like Teresa to help out, but I know sometimes you feel burdensome to that person that you love so much. Can't wait to see you two back shopping Tesco together, we all want to see that video!!! Take care and hugs to both of you!
Thanks Rona, I sure am looking forward to some independence. There’s a lot of things to consider, but we’re taking steps in the right direction. I’ll have to rig up a “Scooter Cam” for sure 😊👍
That’s exactly right Chris. There’s nothing worse than standing up from the chair, but not actually being able to take a step for fear of falling. Are you considering a mobility scooter as well?
@@NeilBradleyMS I have one ,it's a 3 wheeled scooter ,I built a ramp going in house a year ago cause I knew the day was coming , I cried the whole time I was building it ,cause it's reality of my future and it's the worse feeling ,wish you the best
Bless you Chris, I know that feeling well.. the reality of my future too, trust me I’ve shed those same tears. The thought of not being able to walk by my wife’s side holding her hand, breaks my heart. But at least with a scooter we are able to still get about aren’t we.
I know your suffering and I can tell. But you look good Neil and I wish you the best. My biggest problem with my MS is balance and leg pain, especially my feet. Gabapentin used to work, but it no longer does. I also am type one diabetic which complicates things. I sit here day after day and it seems like I'm going to drift away, and then something totally unrelated to ms happened, I found my birth mother and my family after 56 years. I did a DNA test 5 years ago with no results. It's been a year since I last looked and all of a sudden I found my brother which lead to my mother. So in the next month I will be flying to Pittsburgh PA to finally meet them. I'm not sure if there's a moral to this story other than to say sometimes small miracles can happen to brighten one's life. It's my sincere wish that such a miracle will find it's way to you soon. God bless.
Hey Matthew, wow that’s so amazing that you found some of your family after such a long time. It’s does make you think doesn’t it that sometimes these things are sent to take your mind off what’s happening to you. I’m really pleased for you. I’ve stopped all the drugs, because they slow down your Central Nervous System, and certainly for me they worsen my mobility which is already rock bottom. Like you my balance is complete SHOT, hardly anything at all. I also suffer terribly with my legs, the pain increases the further towards my feet you go.
Thank you Julie, I’m trying to manage with a crutch, and furniture walking Julie. But I’m finding it extremely difficult. I hope the rollator helps you somewhat. I too hope things get better for you. xx
Hello Carlie, how lovely it is to hear from you.. and thank you. I was in fact watching one of your videos the other day, and I have to say it was so lovely to see you in person!! I've always heard your voice, but I've never seen you, and you're so lovely. So no more hiding behind the camera :) Take care of yourself.
Hello Neil 😊 First thing I would like to say is that even though you are feeling not so great, you look fabulous!! Better than the last video. I think you should go for it..... get a different vehicle so you can fit a scooter in. I can see the pain in your eyes, wanting to be with Theresa!! My husband and I are very close also, so I can relate to the heartache you are feeling. 100% on getting a new vehicle!!!! Take care my friend and give Theresa my love! Take care xoxo
Hi Kelly, thank you so much for your kind words. You have hit the nail on the head, like you and your husband.. Teresa and I are very close and we do everything together. We’ve only got to be apart for a little while and we miss each other. So, not being able to assist her breaks me. I need a solution to this problem, and as much as I love my current car it’s just not practical for my needs anymore. You take care too xoxo
Don't give up! I completely understand the jelly thing. My back is very similar. A scooter would be a godsend. Might be you'd end up loving the freedom that scooter gave you.
Hey Michelle, Really! I'm really sorry to hear you are the same as me, it's not nice is it and I hate it. Today I'm in loads of pain with my back, much more than usual. The weather here in the UK is gorgeous, and all I want to do is be outside in the garden. But I can't, because everything is just so difficult at the moment.. not to mention I'll get warm outside which will hinder me even more. Michelle, are you able to get about with the aid of perhaps a scooter or maybe a wheelchair? I hope so. I won't give up, but you must do the same.
I think you're lookiing quite fresh my brother, Neil :) you know , I also have similer back issues. Feels very weak but I also feel a lot of aching from my neck and all the way down the spine. Lately I'm struggling to carry my backpack. Do you also suffer any aches like me? I would change the car for the scooter probably but at the end of the day it is your decision. You are the only person who knows what is right for you . I feel your frustration and I really hope that your doctor gets back to you soon.
Hi Adam, thanks for your message. I’ve always got the numbness/altered sensation in my legs, and as a rule my back is usually very sore (and weak) most of the time. However, these symptoms often vary from day to day. Always great to hear from you Adam.
Hi Neil and Teresa. It's me again. :) I don't know what you'll think of this, but here I go. What about a van that has a motorized ramp to allow a motorized wheelchair in, where the front passenger would normally sit. The motorized wheelchair gets secured to the floor, plus I also think they utilize the seat belt for extra safety. And you can get vans tall enough for the chairs that are needed for taller people with bigger seats. You would obviously stay seated in the chair the whole time, so you wouldn't have to worry about trying to get it in and out of the vehicle. What do you think of that? It is an option here in the states. I know it obviously costs more, but when you are talking about mobility being the issue, and needing your independence, well I figured I'd tell you my idea and see how you liked it. I am sorry you still haven't heard from the Professor. While chasing them down may not make them go any faster, it may ease your mind at least knowing what it is that they are or are not doing about your health! I would think it might possibly light even the tiniest fire under their backside. It couldn't hurt. I'm sorry you weren't able to go shopping with Teresa. I know it pains you; I can see it on your face. I hear it in your voice, too. Have you and Teresa thought about getting someone to help to do your shopping and housework, like the dishes, so you and Teresa can spend quality time together? I'm going to call Monday and see about looking in to what's called a Chore Provider here for me. I do need help. I am just going to have to swallow my pride, and see if I qualify. I hope everything works in your favor, and the sooner the better, doggonit! Please take care of each other. I hope to hear some good news soon.
Hi Dianna, and thanks you for your kind thoughts and ideas. Whilst the van idea with a ramp is a good one, I feel at this moment I’m not quite “there” yet if you know what I mean. I can still walk, but I’m just very limited and slow because my muscles basically from my back downward have stopped working properly. My back muscles are very stiff and are making life very difficult at the moment. Also Teresa doesn’t drive. I really do appreciate your kind thoughts though, so thank you. x
@@NeilBradleyMS Well, they do make these vans with you in mind as the driver as well. Just something to keep in the back of your mind, for future reference. All my love to you and Teresa. xoxo
Hi. I remember in one of your other videos you said when you were getting a diagnosis, you had am MRI and it showed problems with a disc in your back. Did you have pain with that? I have a disc bulge but don't seem to have pain with it so I'm a little wooried my GP will put my leg nerve and muscle symptoms down to that instead of ivestigating further. I wouls be very grateful for any advice. Thank you so much.
Hi there Dawn, and thanks for your message. I’d been having symptoms which started in my feet then progressed into my legs back in 2007. Over the next 4/5 years things improved significantly until everything flared up again in 2012. This is when I had my first MRI, which showed a disc bulge in my lumber. They believed this was causing all my neurological problems. I had a micro Discectomy within a few days (they got me in fast) but after the surgery none of my symptoms went away!! This is when they spotted the white lit up spots on my spinal cord, lesions basically. It was then in the May of 2013 I was diagnosed with MS. That is a very long story short. To add even more complexity to my journey, this last 12 months I’ve been re-diagnosed with a different condition which is in the same “camp” as MS called Neuromyelitis optica, I’ve documented this in a lot of my more recent videos. I hope you’re keeping well. Best to you.
@@NeilBradleyMS Hi Neil. Thank you so much for your reply. I'm 61 years old so a bit old for an MS diagnosis I know, but I've had lots of symptoms over the last 18 years. I mentioned to my GP and other health professionals that I was worried about MS but they all say I don't think it's that, not very reassuring but what can you do lol. So my GP is now referring me to a neurologist I believe, regardingo my back problems, but of course with all that is going on it could take months and months. I'm worried because my walking is getting worse, I have foot drop on my right side (even though the mri showed disc bulg eon left side) very confusing. But just have to be patient, extraordinary times at the moment. Thanks again for your reply, very kind. I wish you well and all the best for the future. Dawn x
I am beginning to become very familiar with the inside of my wife's car. my legs ar real weird now. I kind of walk sideways. I think I am going to drop my pride and get at least a scooter. My worst ms attack followed an infected tic bite. If i recall you had a viral thing that started the downhill slide....... there is a school of thought that ms, etc is caused by spirochete bacterium. Lyne and similar. but what to do once the ball is rolling i don't think anyone knows....... Best Wishes, Tom O'Brien CT USA
Hi Tom, Lyme disease symptoms closely resemble that of MS. Maybe it’s worth seeing a Lyme specialist to see if they can shed any light on this for you. You are quite correct, in my first video I describe how I was going through a really stressful time in my life, and I got a really bad chest infection, I’d also recently had Flu which put me in bed for about three days. I believe this was the trigger. Tom, I placed an order for a scooter last night!! I’m going to do a video when it comes, but hey I’ve given you a heads up😉 Thing is, for me first it was a walking stick, pride seriously dented. This then became a crutch (more dented pride) but now I’m really struggling with a crutch, so I have to stay in the car! I note you know this feeling as well. If I want to maintain my independence, it’s just something I’ve got to do, I don’t want to do it! But my body is letting me down big time, and by the sound of it, so is yours Tom. Do what I did, and just have a browse online, something might jump out a “feel” right for you.
Hi Neal. I know what your talking about. I love to go out with my wife also and my fatigue and balance makes it almost impossible. I bought this scooter that has been such a blessing. It folds very small and weights only 50 pounds. Fits in our car trunk with no problem. Unfolds super easy and I can go in planes with it. Just did a trip to NYC with it and was just great. People get impressed every where I go because of the small footprint when folded. Hope the info helps. Take care. Solax Mobility - Mobie Plus - Folding Travel Scooter - 4-Wheel - Red www.amazon.com/dp/B01N2RFQYY/ref=cm_sw_r_cp_api_i_bPbyDb5E6GBPH
Hey Anthony, thanks for sharing that with me. Your scooter looks brilliant, and they really do bring a new level of independence to us don’t they, especially as they’re so versatile. Unfortunately a lot of the scooters have low seat backs which don’t work for me. I’m tall and I have a terribly weak, stiff and painful back. So I need a scooter with a bigger more adjustable seat. This to be honest is the problem I’m facing, because none of the smaller scooters which do fit in the car have a suitable seat for me. It’s the middle range scooter and above. Thank you for messaging me Anthony, I hope you have a lovely weekend my friend.
Hey Neil, you do sound very up beat considering so that is great news, Im sorry to hear your getting knowhere when it comes to getting some meds, I would be on at your GP. Getting him to push for some news or at least help you somehow. When it comes to the car I would say have a look at the Citroen Berlingo. Ive been looking at these as small campers and this would suit your needs too. Keep smiling mate and in your current condition have you considered becoming a Uber taxi man??? You could make yourself useful that way and get you out of Teresa's hair for a bit 😁
Hey Ian, I've had a quick look at the Citreon and it looks like it would do the job nicely. But, I've already got a vehicle in mind.. not saying what just yet but if I go for it obviously there will be a video :) I think if I've not heard anything by the end of next week I need to start chasing the Professor, as Derby (where I have my treatment) won't budge until they've heard from him.
You definitely need a scooter. Do everything you can to keep your ability to be mobile. Waiting 5 weeks for a response from a professor as you say is so unacceptable. You are a patient man for sure. I think I would rather pay for health insurance and be able to see a doctor within a few days and get a response and meds from them at that time. I know it's expensive but what good is free medical care if you cant get them to do anything. So frustrating for you.
@@ingrid-xh2mz so sorry for your high medical Bill's. It's TRUE specialists are usually several weeks out on appointments . I pay for the best secondary insurance . They pay very well with no copays. My husband has Coventry insurance with eat a they cave a copay with a max. Of 2000.00. He has liver cancer and we expect his medical Bill's will run into thousands they will pay almost all except 2000.00 per year. I just had a knee replacement with no deductable. So far we have recieved no bill.
Hi Susannah, hmm not sure about that one. I see where you’re coming from though. We can actually get a wheelchair in our boot, but not a medium size scooter.
@@NeilBradleyMS I googled 'Scooter Rack for Car' and they exist!!! Yay!! It is a rack/platform much like a bike rack gets installed outside the rear of your car. There's all different sorts.
I'm sure sorry u are unable 2 get out and socialize like ur used 2. Good 2 hear u can still drive. I lost my license due 2 an accident. I understand the importance of independence and esp. Being w/ ur lovely wife. 🙂
Thank you Mary, yes fortunately I'm still able to drive because basically it doesn't require standing in any way. I'm terribly sorry to hear you lost your licence, this must have a devastating impact on your independence, I know it would me. It was only a few weeks ago, my fitness to drive was being assessed and I wasn't sure if I'd be able to drive again. Fortunately I can, otherwise I feel it would be the final nail in my coffin! Thank you for your understanding Mary, bless you.
Aww Neil, I can tell that you were struggling emotionally in this video. Never suppress your emotions pal. Hope you can get an answer from Derby, so you can get the meds yon need.
Hi Julie, I know that feeling well. My knees start collapsing and turning inwards. My back starts to collapse, I feel weakness in my hips when trying to climb the stairs. I hear you. xx
Oh Neil, I am sorry you are struggling with weakness and walking. Have you heard of the MS gym? They might be able help. Check them out. There are some that are having tremendous successes with them. www.themsgym.com/
Hi Vicki :) Thanks, yes I'm subscribed to the MS Gym and I've taken on board a lot of the exercises specifically to try and strengthen my back and legs. I've been doing them daily as part of my routine for several months until recently. I'm still trying to do them, but I'm so weak I literally can't do even half of a what I used to be able to do. Still keep trying though. I hope all is well with you.
Hello both,go get yourself a lighter scooter.my scooter comes apart and I have same problem with assembling and disassembling myself.myself and husband think winch or new scooter is answer.i couldn't do without it.i have to be out and about.independence is everything.im shocked that you still waiting for a diagnosis.😱they need a kick up the rear end.its ridiculous.im on new treatment tecfedira.i been getting along headaches and my balance is rubbish.i fear I'm relapsing again.im getting alot pain and leg spasms.i hope you get sorted soon and you whizzing around on a scooter maybe? Toodlepip for now.sharon.🤗🤗🤗
Hello Sharon! :) I completely understand your independence being so important to you. At the thought of getting a scooter, I start to feel quite excited inside and I can feel a glimmer of hope for myself. For me however, I can't manage the smaller scooters as they don't seem to have a suitable seat for me. I'm tall, and the small seats don't give my back enough support, and I end up in terrible pain. So I have to get a mid-range one which don't fold up, so this is why I need a vehicle with a large enough hatch space so I can have a winch fitted to get the scooter in. Yes, they do need a kick up the ar**, for sure .. but in my experience with the medical profession, they are under so much demand it doesn't matter what I do, I can't rush them. It will still take as long as it takes (unfortunately). I'm terribly sorry to hear that you may be having another relapse Sharon, it might be possible that your new treatment of Tecfidera isn't suiting you and not doing it's job properly. Be sure to mention this to your MS people when you next see them. Toodlepip for now :)
I am waiting for the DVLA if my driving licence with be renewed. I work full time and I need to get to work. Every 3 years I have to do this and each time it gets harder. Sorry moan over, do you have this issue with your driving licence ?
Can I ask... is it straight forward at renewal? I'm half way through a 3 year issue of a medical licence. Not sure how they would carryout a renewal assessment 😊
DVLA send out a form to my doctor and hospital ,they fill out and ask if I can drive. My issue is I am lemtranda which sent alarm bells ringing at the DVLA. I have completed course so just hoping .
Hi Indie, I have to renew my licence every three years because I have an MS diagnosis. Prior to just renewing, the previous two times I’ve done this have been a breeze. I just fill in a form, off it goes to the DVLA and they send my licence back. But not this time!! The form was more complicated, then they wrote to me saying they are going to contact my consultant to assess my fitness to drive. I was worried for several weeks because my licence expired at the end of July. Fortunately everything was ok and I got my licence again for another three years. But I was in tender hooks for a while.
Hi Janet, in the UK the DVLA write to your consultant to assess your fitness to drive. I’ve also read that, we could also be subject to an actually driving assessment where we have to prove we can drive ok by going out with an assessor. Fortunately for me this time I didn’t have to do this, having said that I wouldn’t be too worried as I CAN drive safely. But I only do short journeys. So I wouldn’t want the trouble of driving a good distance to the assessment centre, then doing the drive, then coming home. I know that would be too much for me. But I bet you the assessor wouldn’t come to my home to do it.
@@NeilBradleyMS Hi Neil, yep same as my story. Used too get renewed, this time I have too see my doctor, who I never see. My consultant at hospital is ok for me too drive. Taken so long for doctor too see me my license expires mid September.
Hi guys! I completely agree with the mobile dismantling drama. My family and I went on holiday and we rented a van to be able to accommodate 3 units because there's several of us that have mobility issues. It was decided to not waste time and strength. We would leave the units upright in the back of the van, with the brakes locked on, snugly against eachother to keep them stable once the van was moving. That only solved part of the problem. Those things are heavy! No one was willing to pull them up and carry them down to the floor everytime. The groans and staring at the back of the van was expected. I suggested rock, paper, scissors 🤷🏻♀️😄 A team of either 2 or 3 people had to work together per unit. If we had the strength on our legs, arms and backs to be able to go thru all that, we wouldn't need a unit in the 1st place right? 🤦🏻♀️😉 But, we did it...took several tries and a descent amount of time everytime but it was done. Go, team! 🥳 😁
I'm sorry you haven't received a word from the hospital. I know how disheartening it can be. When I was told by a friend who is also a nurse, that I should limit my daily walks, I was visibly upset because when I was in school I trained to be in athletics and running. The docs told me last year that because of that training and mindset I was able to keep my strength up. Once I was told I had to consider staying at home more and to be aware of my "new" physical limitations I cried. But, 2 weeks later I was walking little by little building up my resistance again. I just couldn't see myself staying away. Whenever my left leg starts acting up (that's the troublemaker of the two), and my lower back and neck feel heavy and uncooperative I ask, if possible, to be taken to the nearest park or to the pier. My loved ones can't always help, but when they do, they let me go sit by myself without asking questions.
I keep praying that you find a treatment that can trully make a difference. Please know that we are hearing you Neil, and we understand. 💜
Hi Jay, sounds like you found the perfect solution when you went on holiday. As for keeping your strength up, yes it’s important to be aware of your new limitations for sure, but my advice would be to keep your muscles as strong as possible by any safe means you can, whenever you feel well enough. Like you, I was always very active in my past, and to go from that lifestyle to this very inactive one is a bitter pill to swallow. Until recently I used to do regular exercises (I still try) to keep my muscles going, but I’m so weak now I literally just don’t have to strength.
I really appreciate your message Jay, and of course your support. Be well my friend. 🙏
Hi Neil, thanks for the update. Physical limitations can be so isolating which is not good for us! I hope you have luck getting some sort of scooter that works for you so you can be more engaged and go out and about👍. Love to you and your wife from Michigan 🥰
Thanks Lynn .. yes indeed, I'm feeling more and more disabled everyday. My wife and I have been having breakfast out Saturday morning for as long as I can remember. But this last few weeks, the walk from the car to the restaurant (only about 50 feet) has been getting more and more difficult, and this morning it was so hard!! It seems it's time to give that up now as well. Sometimes I wonder when is it going to ever end. I have to say, the thought of a scooter does give me a bit of excitement, it will be so nice to have a bit of independence back. Love to you also from the both of us. x
Hi, Neil I'm the same spine is very weak and legs, know how you feel, it was nice to see you in Andy's stream, I saw your garden lady gnome in supermarket last week made me think of you both, have a good day.
Hey Marcia, yes I’m I really enjoy it in Andy’s live stream.. I’ll definitely join again if and when the timing is right. Ahh yes, the Gnomes.. we got ours from Tesco. Love them.
@@NeilBradleyMS hope things get sorted for you soon.was fun seeing you join in on Andy's live.much love to you and the better half 🤗🥰
moody motha Hi Moody😊 Yeah I really enjoy his live stream and will definitely join in again next time I spot it. Much love to you also. Take care.
All supermarkets now have wheelchairs and electric scooters in them now, I just take my own wheelchair, I'm past caring now I used to be embarrassed but I've realised I'd be more embarrassed if I fell over and couldn't get back up! X
I don’t blame you Sue, I see where you’re coming from. The supermarket scooters for me aren’t suitable because the seats don’t have high backs, to support my back.
@@NeilBradleyMS
I've never been on a scooter I'd probably crash into a display lol xx
Glad you have decided to get a scooter with a lift , and you can get the ones that attach right to the back of your auto. You will have sooooo much more mobility, and believe me you will feel better mentally and physically having more of your independence back in whatever form it may be. It's great to have a lovely soul like Teresa to help out, but I know sometimes you feel burdensome to that person that you love so much. Can't wait to see you two back shopping Tesco together, we all want to see that video!!! Take care and hugs to both of you!
Thanks Rona, I sure am looking forward to some independence. There’s a lot of things to consider, but we’re taking steps in the right direction. I’ll have to rig up a “Scooter Cam” for sure 😊👍
I feel you whole heart, same thing for me ,feel like your stuck watching the world go bye
That’s exactly right Chris. There’s nothing worse than standing up from the chair, but not actually being able to take a step for fear of falling. Are you considering a mobility scooter as well?
@@NeilBradleyMS I have one ,it's a 3 wheeled scooter ,I built a ramp going in house a year ago cause I knew the day was coming , I cried the whole time I was building it ,cause it's reality of my future and it's the worse feeling ,wish you the best
Bless you Chris, I know that feeling well.. the reality of my future too, trust me I’ve shed those same tears. The thought of not being able to walk by my wife’s side holding her hand, breaks my heart. But at least with a scooter we are able to still get about aren’t we.
I know your suffering and I can tell. But you look good Neil and I wish you the best. My biggest problem with my MS is balance and leg pain, especially my feet. Gabapentin used to work, but it no longer does. I also am type one diabetic which complicates things. I sit here day after day and it seems like I'm going to drift away, and then something totally unrelated to ms happened, I found my birth mother and my family after 56 years. I did a DNA test 5 years ago with no results. It's been a year since I last looked and all of a sudden I found my brother which lead to my mother. So in the next month I will be flying to Pittsburgh PA to finally meet them. I'm not sure if there's a moral to this story other than to say sometimes small miracles can happen to brighten one's life. It's my sincere wish that such a miracle will find it's way to you soon. God bless.
Hey Matthew, wow that’s so amazing that you found some of your family after such a long time. It’s does make you think doesn’t it that sometimes these things are sent to take your mind off what’s happening to you. I’m really pleased for you.
I’ve stopped all the drugs, because they slow down your Central Nervous System, and certainly for me they worsen my mobility which is already rock bottom. Like you my balance is complete SHOT, hardly anything at all. I also suffer terribly with my legs, the pain increases the further towards my feet you go.
I’m the same. I call it back collapse. Thanks for sharing/update. Hope you hear from Professor soon. Take care 🤗
Hi Nic, and thanks .. yes that's the perfect name for it "Back Collapse". I think I'll use that to describe it from now on. I hope you're well.
Hey Neil
Yes I used to have it nearly every day. Now I get it about once a month. Keeping fingers crossed for you 🤗
I have a rollator when walking but still struggle. I hope things get better x
Thank you Julie, I’m trying to manage with a crutch, and furniture walking Julie. But I’m finding it extremely difficult. I hope the rollator helps you somewhat. I too hope things get better for you. xx
I hope you have a better day and will pray for Everything to work in your favor.
God bless you both!!!
Hello Carlie, how lovely it is to hear from you.. and thank you. I was in fact watching one of your videos the other day, and I have to say it was so lovely to see you in person!! I've always heard your voice, but I've never seen you, and you're so lovely. So no more hiding behind the camera :) Take care of yourself.
Thanks for the update. So frustrating waiting for a DX! Take care of yourself and the Mrs.
Cheers Lee.
Hello Neil 😊 First thing I would like to say is that even though you are feeling not so great, you look fabulous!! Better than the last video. I think you should go for it..... get a different vehicle so you can fit a scooter in. I can see the pain in your eyes, wanting to be with Theresa!! My husband and I are very close also, so I can relate to the heartache you are feeling. 100% on getting a new vehicle!!!! Take care my friend and give Theresa my love! Take care xoxo
Hi Kelly, thank you so much for your kind words. You have hit the nail on the head, like you and your husband.. Teresa and I are very close and we do everything together. We’ve only got to be apart for a little while and we miss each other. So, not being able to assist her breaks me. I need a solution to this problem, and as much as I love my current car it’s just not practical for my needs anymore. You take care too xoxo
Don't give up! I completely understand the jelly thing. My back is very similar. A scooter would be a godsend. Might be you'd end up loving the freedom that scooter gave you.
Hi J, absolutely.. to regain some independence would be lovely.
@@NeilBradleyMS I'm probably looking at a walker for myself. I wear out so fast it is sort of worrisome. My cane helps but I guess a walker is next.
I am actually the same way...I know can’t go anywhere..don’t give up
Hey Michelle, Really! I'm really sorry to hear you are the same as me, it's not nice is it and I hate it. Today I'm in loads of pain with my back, much more than usual. The weather here in the UK is gorgeous, and all I want to do is be outside in the garden. But I can't, because everything is just so difficult at the moment.. not to mention I'll get warm outside which will hinder me even more.
Michelle, are you able to get about with the aid of perhaps a scooter or maybe a wheelchair? I hope so. I won't give up, but you must do the same.
I think you're lookiing quite fresh my brother, Neil :) you know , I also have similer back issues. Feels very weak but I also feel a lot of aching from my neck and all the way down the spine. Lately I'm struggling to carry my backpack. Do you also suffer any aches like me?
I would change the car for the scooter probably but at the end of the day it is your decision. You are the only person who knows what is right for you .
I feel your frustration and I really hope that your doctor gets back to you soon.
Actually you did mention it is painful. My sincere opologies.
Please take care, Neil.
Regards Adam.
Hi Adam, thanks for your message. I’ve always got the numbness/altered sensation in my legs, and as a rule my back is usually very sore (and weak) most of the time. However, these symptoms often vary from day to day. Always great to hear from you Adam.
Hi Neil and Teresa. It's me again. :) I don't know what you'll think of this, but here I go. What about a van that has a motorized ramp to allow a motorized wheelchair in, where the front passenger would normally sit. The motorized wheelchair gets secured to the floor, plus I also think they utilize the seat belt for extra safety. And you can get vans tall enough for the chairs that are needed for taller people with bigger seats. You would obviously stay seated in the chair the whole time, so you wouldn't have to worry about trying to get it in and out of the vehicle. What do you think of that? It is an option here in the states. I know it obviously costs more, but when you are talking about mobility being the issue, and needing your independence, well I figured I'd tell you my idea and see how you liked it. I am sorry you still haven't heard from the Professor. While chasing them down may not make them go any faster, it may ease your mind at least knowing what it is that they are or are not doing about your health! I would think it might possibly light even the tiniest fire under their backside. It couldn't hurt. I'm sorry you weren't able to go shopping with Teresa. I know it pains you; I can see it on your face. I hear it in your voice, too. Have you and Teresa thought about getting someone to help to do your shopping and housework, like the dishes, so you and Teresa can spend quality time together? I'm going to call Monday and see about looking in to what's called a Chore Provider here for me. I do need help. I am just going to have to swallow my pride, and see if I qualify. I hope everything works in your favor, and the sooner the better, doggonit! Please take care of each other. I hope to hear some good news soon.
Hi Dianna, and thanks you for your kind thoughts and ideas. Whilst the van idea with a ramp is a good one, I feel at this moment I’m not quite “there” yet if you know what I mean. I can still walk, but I’m just very limited and slow because my muscles basically from my back downward have stopped working properly. My back muscles are very stiff and are making life very difficult at the moment. Also Teresa doesn’t drive. I really do appreciate your kind thoughts though, so thank you. x
@@NeilBradleyMS Well, they do make these vans with you in mind as the driver as well. Just something to keep in the back of your mind, for future reference. All my love to you and Teresa. xoxo
Dianna Simon Thank you so much Dianna, much love to you also. Xoxo
Hi. I remember in one of your other videos you said when you were getting a diagnosis, you had am MRI and it showed problems with a disc in your back. Did you have pain with that? I have a disc bulge but don't seem to have pain with it so I'm a little wooried my GP will put my leg nerve and muscle symptoms down to that instead of ivestigating further. I wouls be very grateful for any advice. Thank you so much.
Hi there Dawn, and thanks for your message. I’d been having symptoms which started in my feet then progressed into my legs back in 2007. Over the next 4/5 years things improved significantly until everything flared up again in 2012. This is when I had my first MRI, which showed a disc bulge in my lumber. They believed this was causing all my neurological problems. I had a micro Discectomy within a few days (they got me in fast) but after the surgery none of my symptoms went away!! This is when they spotted the white lit up spots on my spinal cord, lesions basically. It was then in the May of 2013 I was diagnosed with MS. That is a very long story short.
To add even more complexity to my journey, this last 12 months I’ve been re-diagnosed with a different condition which is in the same “camp” as MS called Neuromyelitis optica, I’ve documented this in a lot of my more recent videos.
I hope you’re keeping well. Best to you.
@@NeilBradleyMS Hi Neil. Thank you so much for your reply. I'm 61 years old so a bit old for an MS diagnosis I know, but I've had lots of symptoms over the last 18 years. I mentioned to my GP and other health professionals that I was worried about MS but they all say I don't think it's that, not very reassuring but what can you do lol. So my GP is now referring me to a neurologist I believe, regardingo my back problems, but of course with all that is going on it could take months and months. I'm worried because my walking is getting worse, I have foot drop on my right side (even though the mri showed disc bulg eon left side) very confusing. But just have to be patient, extraordinary times at the moment. Thanks again for your reply, very kind. I wish you well and all the best for the future. Dawn x
I am beginning to become very familiar with the inside of my wife's car. my legs ar real weird now. I kind of walk sideways. I think I am going to drop my pride and get at least a scooter. My worst ms attack followed an infected tic bite. If i recall you had a viral thing that started the downhill slide....... there is a school of thought that ms, etc is caused by spirochete bacterium. Lyne and similar. but what to do once the ball is rolling i don't think anyone knows.......
Best Wishes,
Tom O'Brien CT USA
Hi Tom, Lyme disease symptoms closely resemble that of MS. Maybe it’s worth seeing a Lyme specialist to see if they can shed any light on this for you.
You are quite correct, in my first video I describe how I was going through a really stressful time in my life, and I got a really bad chest infection, I’d also recently had Flu which put me in bed for about three days. I believe this was the trigger.
Tom, I placed an order for a scooter last night!! I’m going to do a video when it comes, but hey I’ve given you a heads up😉 Thing is, for me first it was a walking stick, pride seriously dented. This then became a crutch (more dented pride) but now I’m really struggling with a crutch, so I have to stay in the car! I note you know this feeling as well. If I want to maintain my independence, it’s just something I’ve got to do, I don’t want to do it! But my body is letting me down big time, and by the sound of it, so is yours Tom.
Do what I did, and just have a browse online, something might jump out a “feel” right for you.
@@NeilBradleyMS You are too Correct. Not sure if you care for him but old Tom Baker used to say Twaddle in his part as the Dr.......It's Hard.
Hi Neal. I know what your talking about. I love to go out with my wife also and my fatigue and balance makes it almost impossible. I bought this scooter that has been such a blessing. It folds very small and weights only 50 pounds. Fits in our car trunk with no problem. Unfolds super easy and I can go in planes with it. Just did a trip to NYC with it and was just great. People get impressed every where I go because of the small footprint when folded. Hope the info helps. Take care. Solax Mobility - Mobie Plus - Folding Travel Scooter - 4-Wheel - Red www.amazon.com/dp/B01N2RFQYY/ref=cm_sw_r_cp_api_i_bPbyDb5E6GBPH
Hey Anthony, thanks for sharing that with me. Your scooter looks brilliant, and they really do bring a new level of independence to us don’t they, especially as they’re so versatile.
Unfortunately a lot of the scooters have low seat backs which don’t work for me. I’m tall and I have a terribly weak, stiff and painful back. So I need a scooter with a bigger more adjustable seat. This to be honest is the problem I’m facing, because none of the smaller scooters which do fit in the car have a suitable seat for me. It’s the middle range scooter and above.
Thank you for messaging me Anthony, I hope you have a lovely weekend my friend.
Hey Neil, you do sound very up beat considering so that is great news, Im sorry to hear your getting knowhere when it comes to getting some meds, I would be on at your GP. Getting him to push for some news or at least help you somehow. When it comes to the car I would say have a look at the Citroen Berlingo. Ive been looking at these as small campers and this would suit your needs too.
Keep smiling mate and in your current condition have you considered becoming a Uber taxi man??? You could make yourself useful that way and get you out of Teresa's hair for a bit 😁
Hey Ian, I've had a quick look at the Citreon and it looks like it would do the job nicely. But, I've already got a vehicle in mind.. not saying what just yet but if I go for it obviously there will be a video :) I think if I've not heard anything by the end of next week I need to start chasing the Professor, as Derby (where I have my treatment) won't budge until they've heard from him.
You definitely need a scooter. Do everything you can to keep your ability to be mobile. Waiting 5 weeks for a response from a professor as you say is so unacceptable. You are a patient man for sure. I think I would rather pay for health insurance and be able to see a doctor within a few days and get a response and meds from them at that time. I know it's expensive but what good is free medical care if you cant get them to do anything. So frustrating for you.
@@ingrid-xh2mz so sorry for your high medical Bill's. It's TRUE specialists are usually several weeks out on appointments . I pay for the best secondary insurance . They pay very well with no copays. My husband has Coventry insurance with eat a they cave a copay with a max. Of 2000.00. He has liver cancer and we expect his medical Bill's will run into thousands they will pay almost all except 2000.00 per year. I just had a knee replacement with no deductable. So far we have recieved no bill.
His insurance is etna
Can you get (or have someone make) a bike rack of sorts that you could put a wheelchair on or a scooter?
Hi Susannah, hmm not sure about that one. I see where you’re coming from though. We can actually get a wheelchair in our boot, but not a medium size scooter.
@@NeilBradleyMS I googled 'Scooter Rack for Car' and they exist!!! Yay!! It is a rack/platform much like a bike rack gets installed outside the rear of your car. There's all different sorts.
I'm sure sorry u are unable 2 get out and socialize like ur used 2. Good 2 hear u can still drive. I lost my license due 2 an accident. I understand the importance of independence and esp. Being w/ ur lovely wife. 🙂
Thank you Mary, yes fortunately I'm still able to drive because basically it doesn't require standing in any way. I'm terribly sorry to hear you lost your licence, this must have a devastating impact on your independence, I know it would me. It was only a few weeks ago, my fitness to drive was being assessed and I wasn't sure if I'd be able to drive again. Fortunately I can, otherwise I feel it would be the final nail in my coffin! Thank you for your understanding Mary, bless you.
Aww Neil, I can tell that you were struggling emotionally in this video. Never suppress your emotions pal. Hope you can get an answer from Derby, so you can get the meds yon need.
Thanks Dean 🙏
My legs are like jelly have pain in my back and hips x
Hi Julie, I know that feeling well. My knees start collapsing and turning inwards. My back starts to collapse, I feel weakness in my hips when trying to climb the stairs. I hear you. xx
Oh Neil, I am sorry you are struggling with weakness and walking. Have you heard of the MS gym? They might be able help. Check them out. There are some that are having tremendous successes with them. www.themsgym.com/
Hi Vicki :) Thanks, yes I'm subscribed to the MS Gym and I've taken on board a lot of the exercises specifically to try and strengthen my back and legs. I've been doing them daily as part of my routine for several months until recently. I'm still trying to do them, but I'm so weak I literally can't do even half of a what I used to be able to do. Still keep trying though. I hope all is well with you.
Hello both,go get yourself a lighter scooter.my scooter comes apart and I have same problem with assembling and disassembling myself.myself and husband think winch or new scooter is answer.i couldn't do without it.i have to be out and about.independence is everything.im shocked that you still waiting for a diagnosis.😱they need a kick up the rear end.its ridiculous.im on new treatment tecfedira.i been getting along headaches and my balance is rubbish.i fear I'm relapsing again.im getting alot pain and leg spasms.i hope you get sorted soon and you whizzing around on a scooter maybe? Toodlepip for now.sharon.🤗🤗🤗
Hello Sharon! :) I completely understand your independence being so important to you. At the thought of getting a scooter, I start to feel quite excited inside and I can feel a glimmer of hope for myself. For me however, I can't manage the smaller scooters as they don't seem to have a suitable seat for me. I'm tall, and the small seats don't give my back enough support, and I end up in terrible pain. So I have to get a mid-range one which don't fold up, so this is why I need a vehicle with a large enough hatch space so I can have a winch fitted to get the scooter in.
Yes, they do need a kick up the ar**, for sure .. but in my experience with the medical profession, they are under so much demand it doesn't matter what I do, I can't rush them. It will still take as long as it takes (unfortunately).
I'm terribly sorry to hear that you may be having another relapse Sharon, it might be possible that your new treatment of Tecfidera isn't suiting you and not doing it's job properly. Be sure to mention this to your MS people when you next see them.
Toodlepip for now :)
I am waiting for the DVLA if my driving licence with be renewed. I work full time and I need to get to work. Every 3 years I have to do this and each time it gets harder. Sorry moan over, do you have this issue with your driving licence ?
Can I ask... is it straight forward at renewal? I'm half way through a 3 year issue of a medical licence. Not sure how they would carryout a renewal assessment 😊
DVLA send out a form to my doctor and hospital ,they fill out and ask if I can drive. My issue is I am lemtranda which sent alarm bells ringing at the DVLA. I have completed course so just hoping .
Hi Indie, I have to renew my licence every three years because I have an MS diagnosis. Prior to just renewing, the previous two times I’ve done this have been a breeze. I just fill in a form, off it goes to the DVLA and they send my licence back. But not this time!! The form was more complicated, then they wrote to me saying they are going to contact my consultant to assess my fitness to drive. I was worried for several weeks because my licence expired at the end of July. Fortunately everything was ok and I got my licence again for another three years. But I was in tender hooks for a while.
Hi Janet, in the UK the DVLA write to your consultant to assess your fitness to drive. I’ve also read that, we could also be subject to an actually driving assessment where we have to prove we can drive ok by going out with an assessor. Fortunately for me this time I didn’t have to do this, having said that I wouldn’t be too worried as I CAN drive safely. But I only do short journeys. So I wouldn’t want the trouble of driving a good distance to the assessment centre, then doing the drive, then coming home. I know that would be too much for me. But I bet you the assessor wouldn’t come to my home to do it.
@@NeilBradleyMS Hi Neil, yep same as my story. Used too get renewed, this time I have too see my doctor, who I never see. My consultant at hospital is ok for me too drive. Taken so long for doctor too see me my license expires mid September.
sounds like you and i are in identical junctures...........
Hi Tom, nice to hear from you. I take it you are also struggling at the moment then?