What's it like to have Parkinson's?
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- Опубліковано 7 січ 2015
- In this honest and often funny live talk Colin describes his experience with Parkinson's and his hopes for the future. For more honest accounts of living with Parkinson's, subscribe to our channel bit.ly/ParkinsonsUKUA-cam
What is Parkinson's? bit.ly/ParkinsonsExplained
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A very eloquent, humorous, and humble chap, he's a credit to himself and his family.
I love this brave man and so honest i am 74 and had my diagnosis only last Oct 2022, so I feel one off the lucky ones in that I didnt get it when I was younger, I have been able to enjoy walking . dancing climbing etc but now I do know the true meaning of parkinsons, and it is devastating and my HEART GOES OUT TO EVERYONE SUFFERING WITH THIS CRUEL DISEASE, BUT LET IT NOT BEAT US. LETS US HOPE FOR OURSELVES AND FOR THE NEXT GENERATIONS THAT SCIENTISTS WILL FIND A CURE GOD BLESS YOU ALL.
It's a bit like standing on the top of a slippery slope. We watch and wait for the slide to begin.
😢ug
Sir John Walker, a NZ Olympic gold medalist runner, was diagnosed with P.D. in 1996 and is still active. Don't despair, try anything to slow its progression, and keep moving. I play badminton with two P.D. fellows aged 72 and 83. My 68 brother has a recent diagnosis and is using an Australian u/v light device said to stimulate the gut biome that help create dopamine.
Thank you so much you described my life to a T, my friends and family will tell me get up do something get your shower get out and walk ,I can't do anything they can do anymore they think I have given up ,It hurts when I'm talked to like that.So your speech was so reassuring.Thank you
I relate to you. I live alone and am 58. I have a partner who keeps an eye on me and who knows me well enough to see I am trying my best. 7 years diagnosed, I feel so upset with everything, right now. My children are 25 and 22 and my elder is a girl and is more understanding that my lovely son, who is just too young and living in another province, excited by life and not yet realising the half of PD. I know you are not giving up, just simply have lost the energy and hope we PD people lose as pain and fear corrode us. Living within the day helps, but the effort it takes me to shower these days is ridiculous.
I understand your state of mind. May God bless and heal you.
I hope you’re okay, I have essential tremor not PD but I know how you feel. It takes me about 10 minutes to brush my teeth, I seem to brush my face more than my teeth as I shake my hands everywhere 😂😂😢 i started experiencing dysarthria for the first time yesterday and today.. I hope it’s just a weird blip and doesn’t happen again.. I hope everything gets better for you soon 🙏💝
This is awesome 👌 we need more of these kind of videos with people who have been afflicted with this horrible disease. 😢
This video is now more than 7 years old ( when I was diagnosed) but still soooo current. I have watched it many, many times and each time I am impressed with how Colin described his issues - which are almost identical to mine.( except that I can no longer speak or write properly).
I plan to send this video to my closest family and friends so they know a bit more than before.
Thank you Parkinsons UK and thanks to Colin Cheesman also. Hope he is still OK.
❤
Me also
Would they have discovered a cure in the eight years since this was recorded.
Much respect for this gent with the courage to share his personal information in order to help others deal with this disease.
Powerful description of Parkinson's symptoms delivered with sincerity. Thank you.
Can we get an update on this Doctor’s Parkinson’s thank you
This was so informative and helpful
What an articulate and composed talk. Thank you for your effort, bravery and for being a damn good orator. I have had a stroke, not Parkinson’s I know, but I too have to take a raft of pills and face related ‘issues’ each day. Fortunately I can look forward to some sort of recovery, I hope! I am in a wheelchair coming up to a year now. But I can see tiny seeds of hope, despite setbacks that leave me debilitated. Thank you again for the insight and may I wish you better times ahead. Kindest regards to you Sir.
I’m new to this disease and just experiencing the symptoms for about 6 months. ITS INSIDIUOS!
Thank you for the straight truth and frank delivery.
Hi Michael, sorry to hear you have been diagnosed. You may find this section of our website helpful www.parkinsons.org.uk/information-and-support/support-you If you are based in the UK, then there is our helpline on 0808 800 0303 and this video is also useful for people new to the condition ua-cam.com/video/pnBL9b09cdA/v-deo.html Hope these resources help! Best wishes
@@garytracy690 really? You don’t seem like a scammer. This is legit? 😊
@@miekel8663 yes, this is real..
Hello, my dad this year diagnosed, how u feel now, Mr.Michael?
@@parkinsonsuk ty for the info. I was diagnosed since 2016 and slowing the progression is the only treatment. I've been eyeing the Neuralink tech that Elon Musk is developing. Any opinions on that, sir? During my last PD support group meeting we were blessed to have a movement disorder neurologist speaking and I asked the Dr if he or other neurologists in the field have a certain stance on it, he respectfully replied no. My guess it's either too fringe or the man behind the tech has been successfully polarized by the talking heads.
I am a caregiver this has enriched me with more empathy and understanding of this cruel condition.
Yes. I am married to a beautiful man trying to cope bravely every day🙏
My very close friend past away October 2019she had Parkinson's for 30year and bless it was not the Parkinson's that she died of thakyou for sharing this video,
You hit the nail on the head. Thank you!
I like the British man straight to the point...love UK💗
0:15
Thank you Thank you!!! I'm so grateful for all the support, the research, the sharing. I was only just diagnosed. I'm glad i don't have to take this journey alone. ❤
So Well said. It brought tears to my eyes.
Colin Cheesman, thank you for your fine delivery in this Parkinson's Disease talk
I'm wondering though sir, how your doing today. I hope your able to still communicate with your granddaughter 🙂💕💕
Thanks for being so open. And True about your feelings.
Oh my gosh what an amazing speaker and the sad reality of this diseases horrible effects! Yet he certainly gave us hope for the future. 😏❤️🤞🤞🤞
Brilliant delivery honest and succinct...my hubby seven years on this journey and this is the most realistic summary of how this horrible disease is...tough on the sufferer and sometimes a lot worse for the carer seeing their partners decline and trying to cope with everything...takes a toll on both their physical and mental health.....
You really said the truth here. The caregiver goes thru maybe just as much in some ways. It’s very difficult. My hubby is about 12 yrs in and had the DBS installed 6 yrs ago. It addresses tremors but not much else. Still has the freezing and slowness of movement, speech issue, drooling, only a few falls thank goodness. Doing pretty good that way but mentally he is very depressed all the time and living w someone who has these symptoms is very very hard. I feel like it plagued both of our lives and I don’t know if I will survive it. It takes a toll on both of us. I am tired all of the time and worried about the future constantly. Oh well, must carry on….
@@chippy7745 my brother has msa c too,it is so sad ,he has,as have l,found peace with God,my heart goes out to you both,please,ask the dear Lord to help you,take care x
@@judecaldwell9047 …thank you Jude. I try to view the good things in life as much as is possible and try to be grateful too. I trust in God and just pray that he will help guide all of us through this nightmare of Parkinson’s. I see that so many others have worse Parkinson’s than my husbands and my heart goes out to them too. Please find a cure most of all. So many suffering out there.
@@chippy7745 it is a broken world,yes,and l can only imagine your daily struggle,l hope you have friends,support outside the home,you need to look after yourself too.l have survived major trauma,but only through God,hold tight to Him my friend,day by day,He is there right beside you through this and your husband too,prayer is powerful,for you both,take care,Gods peace be with you x
Thank you for speaking of what I feel like and endure daily
a wonderful and inspirational message!
Such a courageous man. Thank you so much for your insights
I hate PD. My mom has Stage 5...the tremors, the falls, slurred speech and just watching her waste away breaks my heart. I cry almost everyday. I try to talk to her as she can’t really talk because she says she has no energy to speak.
If the world scientists developed a vaccine for Covid in less then a year, I bet they have cures for all kinds diseases but big Parma and the government know that “medicine” brings in big money for them so that’s why scientists won’t find a cure for this reason. Big pharma big lie and secret telling the world there’s no cure for PD or anything.
As time has shown they wasn't able to cure Covid. There is no telling what was in the vaccine we took. I didn't start to develop Parkinson symptoms until after the vaccine. I was perfectly healthy. Makes me wonder.
God bless you from Scotland
Thank you for your personal parkinson life story. Not far from mine. Until I've decided to get DBS. Then yes I felt hope. Feeling DBS is feeling hope. Cheers to my Neurosurgeon and Neurologist team to give me back my life before those years of PD.
It a very beautiful thing to see myself healthy again after using remedy from Dr Ake on UA-cam, I finally got cured of my Parkinson's disease with his herbs med and I can tell how great my health has turned out so far.
Thank you 🙏 ❤️
What a wonderful words to explain the way it is to live with Parkinson’s. Thank you for sharing this!
Thank you for this. I am here because my best friend was diagnosed with PD recently and I need to learn more about it so I can be as helpful to her as possible. I need to know what's coming.
My husband had Parkinson’s and we were very fortunate to have an amazing team of doctors, nurse practitioners at western hospital in Toronto, Ontario, Canada. He had two DBS surgeries that made they last eight years with the disease easier to deal with. This same surgery has now been used to treat a person with alcoholism and some how the patient doesn’t crave alcohol. This has been an amazing breakthrough .
i was diagnosed of parkinson disease 5 years ago,i started azilect then mirapex as the disease progressed in frebuary last year,and I started on parkinson disease herbal treatment from Ultimate Life Clinic,few months into the treatment I made a significant recovery,almost all my symptoms are gone,great improvement with my movement and belance,it been a year and life has been so good for me,contact them through their youtube channel at Dr.Schneider Lon.
What is DBS surgery?
Deep Brain stimulation
@@lindasimpson2383 Deep Brain Stimulation
One of the best talks on Parkinsons I have ever heard!!
Thank you for your presentation.
Thank you so much for this video. About a year ago I noticed my energy for a 47 year old male was falling compared to others. Than came the mornings. Ugh 😫 I feel like I'm 120 in the mornings. I move like a turtle and everything hurts and my legs are so tight. Now a year later I have trouble swallowing. I have zero energy and no motivation to do anything. I've started to notice internal vibrations at times in my legs and in my jaw. My eyelids have tremors that come and go and now I am starting to notice that my fingers will move by themselves and then stop. Then my foot started to do the same thing. I am extremely fatigued. It is all I can do to get through a day of work. When I get home I am absolutely worn out. I can sleep 12 hours and it feels like I have not had any sleep at all. Now I'm starting to notice that in my dreams whatever I dream I am acting out in the bed. My legs feel like I need to move them really fast to release energy. It's all weird and scary. I don't know if it's PD but in 25 days I'll goto the Mayo Clinic and I pray I get some answers as all test here have showed I should be in good health. I continue to pray for us all.
@Parker Shelia can you tell us more about this herbal cure ? I've been living with PD for 3 years.
Very inspiring for anyone who has a similar issue one step at a time. Thank you.
I find if I go backward a step then i can move forward, one of my adaptions trying not to freeze ,
Thank you
What a perfect talk. It was inspiring.
Best talk about Parkinson i have heard from the other people.
Thanks to Colin Cheesman for educating us . I hope that treatment will improve and that the researchers find a solution to alleviate the suffering .
+Michael Lawson Amen
Noor-ul-huda Waseem
Sailing September 2020
Thanks Colin. You /are inspiration😊
Thank u for sharing this. Such a brave man. My husband has signs but has yet to been diagnosed. This helps me understand what he might not tell me because he's a strong man. I hope in the years ahead I can treat him With love and patience FIRST as my husband and SECONDLY to make his challenge easier by standing by his side
What a very inspiring and brave man!Thank you for speaking about this terrible disease.
Just found this what a brilliant speech hit the nail on the head
Fantastic I am posting to my friends it just what I want to tell them but can not put it better
Thanks I appreciate your speech and thanks 🙏👍
God bless
It's the worst if none of the family understand or know what's happening to you. I am 70 and have been living with it in 5 years. I know it's hell.
My son is like this gentleman and it is heartbreaking.
I’m very sorry to hear this.
Definitely relatable. 👍 thanks 👍
I like this guy!:)
God bless everyone! 🙏❤
I know I don't have Parkinson but I deal with conversion disorder which I think it's something else I have bad tremors, weekness everywhere, can't walk without a cane, numbness, nerve pain stiffness etc and just getting worse just learning to cope but can't work but I did try but couldn't and went to therapy, try physio couldn't help me, seeing specialist. I feel like my life is disappearing I front of my eyes but keeping strong and I deal with this 24/7 and going on 3 years wish I can find a doc I want real answers
Hi Christa, thanks for your comment. Our website may have some information which might help www.parkinsons.org.uk/information-and-support
@@parkinsonsuk hi christa i feel sorry for you .mybe you should check out all the information on fasting you never know you might came across something that might help you its worth a look it costs nothing hope this helps.
Thank you for the information. It is a horrible condition. My dear wife suffers from Parkinson's. I wish that a cure or breakthrough will be found even if it is just to ease the suffering.
I've just watched this video for the first time. I'm 62, in my 9th year after my diagnosis and feel exactly how Colin describes his life. How is he now?
hope that we could find the cure sooner rather than later x
I've been watching Neuralink since it's inception. I've been diagnosed 2016 and everything being said is what we PD patients definitely go through.
well stated
I've had early onset for 12 years now my balance is 💩 💩 but I don't let it get me down and I push the limit every DAY
I'm 31 and diagnosed with it at 28 and what a brilliant orator for one and all of those things I can relate to beyond just the tremor that I have to use "my left arm" to type and bend 1 finger and lots of little things one does to try and seem like "everything's fine".. good stuff and never stop fighting Parkinson's!
Well said sir. You are correct when you say we are all living in hope that a cure comes sooner rather than later- I try very hard to forget I have it but as soon as I want to move away from my laptop I am brought back to reality- wheelchair to Walker to lounge then sit down again- which is wrong I know but it’s such a relief.
I’m going deep sea fishing this coming Sunday - I’m basically dreading it if it’s too rough but I gotta go as I promised myself I would catch and release a marlin every year until I was 80. Now coming this next month to 78 I’ve managed it and it’s a challenge I intend to keep going even when I’ve reached 80.
This short video was brilliant and one day when I’ve got my voice better 😊 going to try and talk about my day in the same positive way.
Here’s to a cure!🎉
Dicky Evans
I relate so much to everything he is saying.
wow! Powerful.
Glad you liked the video John. Do remember to subscribe to our channel to receive more Parkinson's UK videos about research, living with Parkinson's and more. Subscribe for a new Parkinson's vid every week bit.ly/ParkinsonsUKUA-cam
My Daughter is 45 years old and was just diagnosed with Parkinson's Disease, her whole right side and she is a Nurse. I know she is devasted, so I feel the need to move back to North Carolina from Florida to see if I can help her, it's in the very beginning stages, so I feel like I need to go be with her in the next year, she will get the best care and live a long life.
❤a very interesting talk
Was diagnosed three years ago, right side shaking, slow walking, severe fatigue, bone pain. Have depression and anxiety. Have nausea and vomiting. Demoralizing
Quisiera saber si hay información en español, soy pac con diagnóstico de Parkinson en México y deseo conocer sobre este manejo o incluso ser parte del estudio de prueba.
Gracias
My father has pd for 13 years also, he is gone very far down that road and he can not do much for himself anymore and can not be left alone, he also has delusions and memory problems. This disease has absolutely robbed him off his life and I hope and pray we get a breakthrough in the near future.
God can only help tnks for your video 10 star
Je boodschap is mooi aangekomen in België 👍Well done 👌
Yes God help us
I have a friend who has had parkinsons for about 12 years now and I can see he is struggling and I think he is getting dementia but he won't admit there is anything wrong with him. I just don't know what to say
Fantastic lecture. Thank you for sharing it.
I have a multiple of symptoms ,resting tremors,facial tremors and twitching,stiffness every day in walking and in the middle of the night with restless jerking in legs,not able to speak and when I try to speak gibber jabber words come out,lots of pain and sometimes head starts to bounce around feel like every day gets worse but I have seen 3 different Neurologist here in Orange county California who can't diagnose me ,they give me different diagnoses ,I have Parkinson's in my family I don't know if it is hereditary,need a good Doctor to help and go the extra mile and not just guess,I start having symptoms in Oct of 2019
My stepdad Bill committed suicide on July 30. He had Parkinson's for 21 years. I'm still in shock. He jumped off an overpass onto the road. His obituary says he died peacefully but it was nothing but peaceful. He died hours later of internal bleeding. His pelvis was broken, his leg, wrist, and the list goes on. My mum is never going to be the same. I wish Bill would have looked into MAID. I understand his quality of life was low compared to his earlier years, but I wonder how much of this was caused by the meds. I'm processing. We're all processing. I won't get the answers I'm looking for. I have to remind myself of that. I loved that man so much. He was all good things. This was in Moncton NB.
After 20 years of what was dx'd as PD,, it has become a prayer for God to take me home. ❤
Unbelievable brave😊
Hi, I am 70 and was diagnosed two months ago, I have had problems for the last 15-20 years, was told it was essential tremor then benign tremulous parkinsonism, then things just got worse trouble holding things, dropping things when cooking etc, cannot write, cannot swallow properly at times, restless legs, foot tapping, voice is husky, grinding teeth etc etc.
My Doctor thinks I'm at stage 3, on Simipex now I just feel that I have been robbed of my ability to work on my car and do other hands on tasks. I live alone in a fairly remote Australian community with no public transport to speak of. Driving is important but I think it is only a matter of time before I lose my licence. I enjoy a beer and people say they don't think I have PD and I just try to laugh it off. Have spilt a few beers as well, I just say "I may spill my beer, but I can still remember where I left it" and laugh.
It is a cruel slow disease but thats the way the cookie crumbles sometimes, so we just have to keep on keeping on. I find as stupid as it sounds playing rock/pop music helps me with getting moving, must be the beat. All the best to you all.
Hay mate! I too dx w PD 6mo ago. Was in denial n now accept dx. Quit my 16 yr job due to health issues. I have tremors left side hand n leg aswell as nerve pain. I believe the c19 shot had alot to do w it. Cause afterwards I had leg pain then tremors there after. Anyway I m starting to oil paint n make my beaded necklaces again to keep my lil brain busy!! Hope u doin good...greetings from 🇺🇸 NM
Oh I wish x
As someone recently diagnosed with Parkinsonism ( not Parkinsons ) have only to look around streetwise and in supermarkets to see there is a awful lot of elderly people in bad shape. Dont know what they suffer from but suspect there is a lot of underdiagnosis and misdiagnosis of these neurological illnesses.
I have Parkinson's and what it's like is a living nightmare tremors head in hand balance issues speech issues swallowing issues hallucinations delusions terrible that have Parkinson's have had it for 18 years
I have had Parkinson's now for 5 years. I would not wish it on my worse enemy. It is truly a very angry disease. No mercy what so ever.
I fallow your instructions I like it
Please tell me the roll of Botax injection in Parkinson disease.
I’ve read that Botox injections can help with Dystonia.
Botox in the jaw muscles helps to stop the overproduction of saliva thus less drooling. My husband had these for years then he decided he didn’t want them anymore.
Amen!
I have nothing to look forward to except a hell to live in.
I have many good days with of my tremer how can be my driving seems a little better maybe I could be more part of the cure.I haven’t been reading about the resuracelike I use to
How could my tremor be gone after 18 years. My memory is worsening I think.but my speech is better at times pain level seems better to. How can this be. Walking my legs weaker
Not that strong my balance much worse with many things some inprovment tremor almost gone
Done
My sister got Parkinson's aged 70, and that was bad enough, the tremors, the falls etc, but she got dementia within 2 years, and now at 75 she is in a nursing home, talking gibberish about everything from how her Mother hasn't been in touch for a month when our Mother died 25 years back, and how she has been for a long walk along the sea front and had a meal out, when in reality she can barely do the soft shoe shuffle, as I call it because of her shuffling stooped gait, to her bathroom, she talks in an extremely quiet voice which is part of the Parkinson's. It's like the volume has been turned down really low on a TV. Now she is doubly incontinent so every time I visit her I end up having to change her, not that the care home aren't helpful, they are, but she will get up to say she needs to wee, so I either stay with her or hover outside bathroom only for her to then be faecally incontinent and it's everywhere, even though she wears what is effectively a nappy. It's a complete nightmare, my formerly clean neat smartly dressed sister who was always out and about early in the day, loved doing things, enjoyed her holidays, travelled to New Zealand etc, is now confined to a unit in a nursing home with other equally confused old souls. Her transition into nursing care came about because her last fall down stairs at home which ended up in a fractured wrist and a bleed on the brain and her elderly husband of nearly 80 couldn't cope anymore. It runs in our family as my maternal Grandmother had exactly the same, my paternal uncle also had it for years but his symptoms were slightly different with constant saliver, couldn't talk properly for years, was confused but didn't really have the full effects of the dementia side to it, and who died in his late 50s. I believe only 15% of cases are genetic though. Everyone is different of course and there are different forms of Parkinson's, so not everyone gets the dementia side of it. But an insidious disease.
Being single, the part that really scares me most is not being able to care for myself, and ending up in a nursing home.
Please do more research for cure
Satish Naik Tom jones
Tom
Tom. Jones
Not unus
I wonder how the gentleman is doing now?
Every No word is so true it is terrible disease
why have three of the speakers been sat with their backs to Colin ?
Good to read about it
Oh crap !
It's hell!
The Prison of Parkinson's - how poignant and aptly put. The despair, the "why me?", having no one to talk to, lest complain to, is par for course. Unless you 're in it already you have no idea about the kind of things that go through a Parkinson's inmate's mind when gathering all the pills to start off the day. Some days you shrug and utter to yourself: " May be I don't need brekky today - I am already so full". Other days you just want to cry.
It is time we break the law - by breaking these invisible walls of the Parkinson's Prison!
The current administration will only take this seriously when they themselves become Parkinson's inmates. Instead of helping the super rich to become the filthy rich, how about easing the financial burden of the pill swallowers by easing their 401K tax burden?
If you told a Neurologist all that would they believe you? Not bloody Likely.
True. I glad I have a Movement Disorder Specialist who not only believes it, but knows about the other less know or talked about symptoms.
Bob Burns iv kept quiet about half the symptoms because they wouldn’t believe me hence i never got diagnosed for years. They made me feel it was all in my head i felt ashamed, i tried to get on with it until it showed then they all pointed the finger and said there is something wrong. I should have had help sooner.
@@Cruella-Deville I’m so sorry… Parkinson’s is so poorly understood.. even now.. it should be more obvious to doctors what the early signs are.. when I was diagnosed with ET at 20 my doctor said straight away you won’t get Parkinson’s even when I have a history of my grandmother having it. I already have shaky body arms hands trunk and voice including my head. I have most of the symptoms it’s just awful, really hope I don’t get PD. My grandmother had PD symptoms as young as her 30’s. I’ve been shaking since 15.. such cruel and poorly understood diseases. People still think it’s an old persons disease.
H
I am fighting the battle to i pray for a cure i punched the wall hard hurt my hand nightmares .
Nnuu
Drugs drugs drugs... and the essential nutrients that are needed every nervous system to function normally? They ignore.
5
I have parrkins
And it not all ifun at
Meditate on the pure Holy word of God in the King James Bible. Proverbs 13 verse 12'. Hope deferred maketh the heart sick: but when the desire cometh, it is a tree of life. Amen. GOD BLESS YOU ALL.
6 años!,l,
What is it like? It f'ing sucks! Don't eat, don't sleep and my friends and family don't get it!
Nothing new!
What’s it feel like? Torture