You may of seen the wonderful Billy Connelly on the TV awards show earlier this week? My husband, and I were very upset to see what PD has done to him.
In the Mail it gives a write up about Billy Connelly, and comments are made about his PD, and how he has written letters for his Grand Children for them to have when he dies, its a good write up about Billy, and his tenacity, and his career, and family life.
What shocked me in the write up was that Billy was only Dx two and a half years ago??? he looks so advanced with his PD, I know all PWP are affected differenly.
I know this has shocked my husband, hes gone very quite since reading this today.
He said they make it sound like Billy is about to die??? I said no he's just putting things in place for the future.
I think its going through my husbands mind, that his neuro told him to make the most of the next 5 years, that was 3yrs ago.
My husband is doing really well at the moment, not been any change in him certainly for the past year.
Has anyone else with PD had a dramatic decline all at once? can this happen? should we be worried?
Has anyone read the article in the Mail? xxx
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allofatremor
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This is such an interesting question and subject. I wonder about that too when I see somebody who has declined noticeably. I like what Billy Connolly said; he is not managing his Parkinson's, it is managing him. What a strange disease, different for everyone. I am still in the early days of this disease and watch apprehensively for signs of decline. I am greatly heartened by people who have had it for many years and are still functioning. Here's hoping.
In my experience, the more you watch for decline in yourself, the more you will find.
It's hard to say as to how so sudden the decline was..he might have had symptoms for many years but was reluctant to seek a diagnosis / treatment etc for example. no, I have not read the paper yet...
I was dx three years ago. After doing study online resources, I cried, then went through a long period of searching for anything I could do to take control. No success.
Ditto Enidah: I am still in the early days of this disease and watch apprehensively for signs of decline. I am greatly heartened by people who have had it for many years and are still functioning. Here's hoping.
The Daily Mail (an English tabloid, for the benefit of our American colleagues) loves a good tragedy - headlines along the lines of: bravely battling (whatever disease it happens to be), a long struggle etc. They never say: so and so has health issues but seems to be doing ok, that doesn't sell papers. However, I also did feel rather low after seeing the television appearance (bearing in mind he's also just finished treatment for prostate cancer) but fortunately, had an appointment with my neurologist the very next day. He said he's seen next to no deterioration in me in the last year. There's a guy in my yoga class dx'd four years who seems to be doing well. Many on here seem to be doing ok a long time after dx. This is no disrespect to those who are struggling because as we are often told, it's a very individual disease.
I worry, of course, and sometimes feel bleak, but the way I deal with it is to think I could get run over by a bus tomorrow (I've always been the cheerful type) and I'd be really annoyed I'd spent my time worrying about something when I was still relatively healthy. It's a pain, but it could be worse. I've been told I'm in denial by one or two people. That's fine. It's a perfectly good coping strategy. Works for me.
The prostrate cancer could be taking a lot out of him also, depending on what stage he's in & what his treatment is.
I know exercise is not good for everyone but, I truly believe , with PD you have to keep moving or it will take over. That's why I keep showing up on this site & try to encourage you to exercise. It doesn't have to be boxing, just get up & keep moving! The sooner the better! Don't give up. Keep fighting & you WILL feel better & live a longer better life. You were dealt these cards for a reason & part of that reason was to inspire others, so get up & do it!
My husband was diagnosed 17 years ago. He certainly is not running marathons but still manages to get around . With the help of medication, regular physical therapy and a mental tenacity to not let this awful condition beat him he continues to function . We both enjoy the good days and get through the not so good days. After many years of dealing with PD we try to remember that we are both ageing and not everything can be blamed on Mr Parkisons.
live each day as it comes and try and look for the humour in life, dwell on the positive, there is a lot of it in life you just need to look for it . Good luck
We are all so different and our disease progressions are different.
I only want to live the hard days once...when they actually arrive. By anticipating and worrying about the "what ifs" I feel I am giving PD the chance to mess with my life twice ...why wreck what can be good days with anxiety over an unpredictable future?... so I work very hard to banish that thinking and focus on the things that are good for me, the exercise, meditation, good people, laughter, grandkids, nature, finding ways to contribute. Oh, it is easier said than done but it is worth fighting to be in a more positive place.
Ack. This sounds like a pep talk and I don't mean it to be. I think we need to allow ourselves time to be sad, to mourn, to be angry or whatever the big emotion is at the moment but owe to ourselves and to those whom we love to not stay stuck there. Name it, feel it, than move it on. And ask for help if we need to.
My mom did pretty well for the first year. The next year was very rocky and the year after that she was in a nursing home, suffering with bouts of psychosis and hallucination. I used to feel so much rage. It took her down so fast. At the time of her diagnosis, she was one of the most independent people I knew, with a very fine mind. However, I must say she did not have the attitude a lot of people in this group have -- of taking the initiative, researching, exercising. It is interesting to me to see what a difference that can make in quality of life as well as longevity.
I thought it was a lousy article, pessimistic & unhelpful. I agree that the Prostate Cancer has had a double whammy effect on him. The whole point of Parkinsons is that it affects everyone differently & you cannot judge yourself by other Parkinsons people. IMHO you just have to do your best to exercise as much as you are able, even if its hobbling from lamppost to lamppost, keep as busy as you can, sing in the shower as loud as you can. eat sensibly & take as few meds as you can to control it.
I think it is a big mistake to try to predict how long our lives with PD will last; how long we can be useful; how long until it really takes over our lives. It is to my mind irresponsible of doctors to suggest such times because there really are no clues - we are all so different. Suggesting such things tends to have one of two possible outcomes. The positives among us will set out to exceed the predictions and will probably succeed in doing so. The submissives will give in and believe the predictions which will most likely prove accurate. Tell a submissive that he'll die in a year and he probably will. Attitude is the key.
Billy Connolly has had a rough ride health wise in recent years but his attitude is a shining example to us all.
I believe I am right in saying that Billy is not taking any meds for his PD, though I could be mistaken. One thing is certain though - he is not letting PD destroy him, so we must not allow his apparent decline, or the rubbish the Mail prints, affect us negatively but strive to keep up with him!
If there are any Americans out there, and other ignoramuses who don't read the Daily Mail, or worse yet, have never even heard of Billy Connolly, heaven help you! You're probably beyond saving, but I'll try:
I had the pleasure of meeting Billy when he performed here in Seattle a couple of years ago. I gave him a copy of The Peripatetic Pursuit of Parkinson Disease, which had recently been published. Quite honestly, I had no idea who he was before going to his performance (which was sold out). But when he heard that I have PD and wanted to share this book with him, I was told to pick up tickets at the door and wait for an escort after the program. Our seats were third row, center, absolutely perfect. At the time I thought he had been diagnosed longer than I had, but that was not the case. After the show his manager came to escort me and my friend backstage to meet Billy. We had a good talk even though he had other old friends there waiting to see him. What a treasure that evening was. I'm sorry to hear the report in the Mail.
In hindsight I can see my ( husband and I ) had been struggling unknowingly for many many years . We just got on with it . He has been pretty fit in everyotherway , the GPS didn't know him and never gad as much as. A headache , in fact one day he asked me what is it like to have a headache , I thought he was joking .
During his sixties as he retired I noticed he was more tired and not as able , I out it down to normal aging . That is until he stared to have a big problem walking , he would wake I a panic at night and ask me to give him a push to turn over .
So many things .
When I asked what was wrong he told me everything is such a struggle .
I googled the blank face slow response without telling him . Persuaded him to go to gp he came a way with pills for high BP !!!!!!
It took and three years of him falling and avoiding going out . No one tried harder than he .
When he was eventually diagnose he was told to keep walking driving and exercise . He had always swam most days of his working life even ..
I went to the GP and told him he was getting worse meds not helping and he suggested that he had given in .
I use to push / encourage him as much as I could . He never ever did feel any positive benefit from the meds or rest or exercise .
The people who use to keep telling him not to give in and keep going didn't have a clue that for some you cannot hold back the tide however hard you are swimming and boy did he or rather WE ! Swim hard .
I am so sorry, cabbagecottage. I have read some of your other posts. It must be incredibly hard. We should all wish for partners like you (mine is fabulous).
i have been led to believe that PWP should not swim??? that it is to dangerous??? i told my husband for the past few years he must not swim on holidays??? maybe i have had the wrong advice? mmmmmh
Yes I think you are correct . I would have worried sick if I
We had known he had parkinsons , he suddenly stopped going himself . I think maybe partly because he was having trouble dressing himself as well .. I use to have to fight with to try clothes on in a shop . In the end I would go in and help him . This was all before we knew though .
He had been a real fighter when I look back .
I wouldn't recommend anyone to swim although I daresay they would start to struggle and stop .
I am no expert but my husband continued to swim until getting dressed afterwards became too difficult. This was in a pool, with a lifeguard, and surrounded by fellow club members. When he could not kick hard enough he stayed in the shallow end, and then he would spend more time resting and chatting with others as they rested. If I had known then what I know now I think we could have kept going even longer than we did.
I would not consider wild water swimming (ever!) but a beach with lifeguards, made aware before entering the water, should be ok.
He could also consider using a buoyancy aid to give you more confidence.
It may have helped that we are/were naturists so did not have to battle with changing under a towel!
I loved to swim and was very good - sea or pool - I used to swim in mountain lakes when I was younger. A few years before I was dx'd I realised my swimming was not as good or as strong and gradually stopped swimming in the sea. The year before my diagnosis, I was on holiday and every time I got in the pool and swam, I listed to one side, like those toy boats you put in the bath! I still swim a little in pools - one of my joys last year was a naked (!) midnight swim in the pool in our rented villa in Portugal. But I make sure someone is around. And I swim very, very badly now.
I read the artic le in the Daily Mail and watched the awards night programme and I shed a few tears. My son has dystonia, it has been described as a most complex case. He had deep brain stimulation last year an d with the help of the unit he is able to control the tremors to some extent. You can see where the holes were drilled into his skull and the wires attached reaching down to the back of his ear and across the chest to the unit. Parkinson's disease and dystonia are linked. I have taught people with PD.
I have also taught people with cancer, all types, bowel, skin, breast, ovaries and brain tumour. The side affects of all the treatment and medication are horrendous.
These conditions are not fully understood, the person with the conditions suffer badly, but family members suffer badly also. They have to try and keep cheerful for the sake of their loved ones. The people with those conditions feel acutely embarrassed and so alone.
With cancer the platelets are low, there is a risk of hemmorhage, eyes, nose bleeds, urine, fecal matter, bruises, internal bleeding.
I could go on and on.
There was a short report printed in 1998 regarding the link between focal hand dystonia and thoracic outlet syndrome.
I watched closely as Brian moved and the way he kept one arm close to his body, on hand in his pocket.
Institute of Neurological and Neurosurgical Sciences 1998.
Springer Science article Updated perspectives on Neurogenic Thoracic Outlet
syndrome.
I hope the media will read this. People with dystonia needs to speak out. My son would be pleased to speak to them, he also can show them a video that was taken while he was in hospital.
We the family do our crying behind closed doors A well known yoga teacher who wrote for the Yoga Journal stated the headstand caused his thoracic outlet syndrome, he must have had the condition first and the headstand aggravated the TOS. Incidently many yoga poses are contraindicated for people with medical conditions.
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