Thread: Parkinson's disease - a puzzling affliction Board: All Saints / Ship of Fools.
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Posted by Sir Kevin (# 3492) on
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i was told that I have it a few months ago. I now see the neurologist every month or so and he gives me some tests and prescribes a larger dose of medicine. It is called Ropinirole HCl. I am now taking 0.5 mg. tablets three times a day.
I can still drive and work. Short-term memory and absent-mindedness may be problems. The doctor thinks not. As I went to him initially for a second opinion, we shall see how this treatment works.
My mother died of it, but then she was 80 years old. I plan to live until at least age 90: my paternal grandmother and my aunt both lived well into their 90s. I plan to be busy when I reach that milestone: Carl Reiner, Norman Lear, Mel Brooks, Dick Van Dyke and Tony Bennett are all keeping busy with entertainment projects. I may not be able to do heavy stage work but I could take a course in novel writing.....
Posted by Welease Woderwick (# 10424) on
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It is yet another cruel and progressive condition but I think you're right Sir K - don't give in to it, just keep on keeping on!
![[Votive]](graemlins/votive.gif)
Posted by Sir Kevin (# 3492) on
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Ta!
Posted by Piglet (# 11803) on
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Sorry to hear that, Sir K. - but WW's right - keep thinking as positively as you can, and know that you've got prayers ascending for you from all sorts of places.
Posted by RuthW (# 13) on
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quote:
Originally posted by Welease Woderwick:
I think you're right Sir K - don't give in to it, just keep on keeping on!
The life expectancy when my father was diagnosed was 10 years, but he got good care and refused to stop doing things he wanted to do until they really were impossible - and he lived over 25 years.
Praying for you.
Posted by jedijudy (# 333) on
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Sir K, I think you have the right attitude! You do have many people who are cheering you on!
Posted by Gee D (# 13815) on
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It is a cruel disease. An uncle-in-law has it, and can no longer drive or do much around the house. Given that he's now 87, he's probably very glad of the second. He did play bowls until a couple of years ago, but had to give up tennis in his mid-seventies. Keep your fighting spirit up.
This is of course not medical advice, but there are tales going around here that a square or 2 of 90% dark chocolate a day will minimise the risk of contracting Parkinson's in the first instance, or then if necessary limit the progression. Probably untrue, but what do you have to lose by trying it? There is always the side benefit of an excuse to eat it.
Posted by Sir Kevin (# 3492) on
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Thank you for all of your encouragement, Ruth, Judy and othersI
I worked 14 hours over two days and had no real problems.
I am now driving the Dursleymobille (my 2002 LHD Vectra Estate is likely assembled in Belgium) and most of the the next because I thought my wife would enjoy the sporty little Focus Titanium in black metallic paint with all the options. She is the better driver and does not race other cars between stoplights !ike I do sometimes.
Posted by cattyish (# 7829) on
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Parkinson's seems to vary greatly. For the physical symptoms keeping active is certainly useful.
Cattyish, aware of a variety of folks who have Parkinson's.
Posted by Barnabas Aus (# 15869) on
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A colleague's husband had early-onset Parkinson's which manifested itself in his late 30's. He was a pioneer subject for a surgical intervention which severed some of the connections between the two hemispheres of the brain. The result was that he was completely freed from the tremors and perseveration of involuntary movements. Haven't seen them for a few years, but understand from others that he's still travelling well.
Posted by Mamacita (# 3659) on
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Sir K, it sounds like you have good medical care, a terrific attitude, and a supportive loving partner. All the best.
Posted by Sir Kevin (# 3492) on
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I appreciate that. I took a mile and a half walk one way from the car park to the meeting venue, then walked back in a moderately warm environment - about 90 F. Got into car, put on a/c, was fine.
Posted by Golden Key (# 1468) on
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Hang in there.
Posted by jacobsen (# 14998) on
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well done for the walking. BTW, What's moderate about 90F?
Posted by Amanda B. Reckondwythe (# 5521) on
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quote:
Originally posted by jacobsen:
What's moderate about 90F?
In Phoenix, where we deal with 110F plus for most of the summer, 90F is downright chilly!
Posted by Chorister (# 473) on
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Sorry to hear of your diagnosis, but glad to hear of your positive attitude - remember to keep getting your inspiration from Sir Kevin of Devon.
Posted by Huia (# 3473) on
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One of the weird things I noticed about my brother with Parkinson's was that his (now) normal gait, which is a slow shuffle, disappears when he is angry. He was stirred up by something our sis-in-law (not the most tactful of people) said and he strode out of the room and down the corridor at a speed I was pushed to keep up with.
It was amazing, the anger somehow overrode his usual walk.
I wish something would override his anger. I'm not sure if it's the Parkinson's or dementia ( or both cos they're linked) but this is becoming a problem.
Huia
Posted by Jengie jon (# 273) on
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Huia
If he has dementia with the amount of change he has had recently it is likely that he is feeling a little disorientated most of the time. His anger will then be more easily triggered because of this. As things become the norm, this should dissipate.
Jengie
Posted by Sir Kevin (# 3492) on
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I seem to be doing a lot of short gigs and having no trouble. I don't eat much and my weight is stable. I have told colleagues I expect to work another ten years or so.
My favorite baseball broadcaster, here in LA, retired earlier this week. Asked what he wanted to do as he approached his nineties he simply said "I want to live!"
Me too - I want to live into my nineties just like Vin!
Posted by Huia (# 3473) on
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Jengie that's what we are hoping but our sis-in-law, who is otherwise admirable, has the insight of a blind tape worm and thinks that if she tells him off he will behave himself. (she regards it as him purposefully misbehaving and doesn't seem to understand that he is not necessarily under his own control).
Huia
[ 28. September 2016, 19:12: Message edited by: Huia ]
Posted by Sir Kevin (# 3492) on
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Coping well - I worked a 10-hour day on a trade show that dealt with genetics and allied diseases such as the one I've got; I don't dare make friends with any of the vendors and exhibitors lest I be found out and my career be over before I can emigrate to the UK or get free health insurance for old age pensioners in the US!
Next day off, I shall go to the Mohammed Ali clinic for the treatment of my disease and find out what goods and services my health insurance will cover - damn all nothing with a private neurologist until I turn 66!
One treatment is low-cost however - boxing lessons on Thursday nights for $5!
Posted by Amanda B. Reckondwythe (# 5521) on
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quote:
Originally posted by Sir Kevin:
Coping well - I worked a 10-hour day . . . . I don't dare make friends with any of the vendors and exhibitors lest I be found out and my career be over before I can emigrate to the UK or get free health insurance for old age pensioners in the US . . . . damn all nothing with a private neurologist until I turn 66!
Very glad to hear you're doing so well under the circumstances, Kevin. It's not pleasant.
You should qualify for Medicare at age 65 although you can't get "full" Social Security benefits until 66. But Medicare is not "free health insurance for old age pensioners." You still have to pay deductibles. And a premium for Part B, plus deductibles. Depending on which supplemental plan you select, your deductibles plus the actual coverage will vary. Be sure you select a supplemental plan that doesn't require additional premiums. I use Cigna and am satisfied for the most part with them.
And who knows how much longer supplemental plans will even be available, given the apparent desire of our present government finally to get around to implementing the death panels they've talked about for so long.
Posted by Piglet (# 11803) on
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{{{Sir K.}}}
Posted by Graven Image (# 8755) on
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The pray mat is out. Sorry to read you have Parkinson, but I am encouraged by your attitude. I am sure half of the living with it comes with positive actions and mind set.
Posted by Sir Kevin (# 3492) on
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TA, FOR ALL THE ENCOURAGEMENT, EVERYBODY!
SENDING A FAX ON TUESDAY TO A NEUROLOGIST I MET BRIEFLY AT THE MOHAMMED ALI CENTER EARLIER THIS YEAR SO I CAN FIND OUT WHAT FEES THERE WOULD BE OVER AND ABOVE THE BASICS....
GOD WILLING, SHE CAN HELP ME...
Posted by Huia (# 3473) on
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Best wishes with that Sir K.
Today I booked tickets to fly to Wellington for my brother G's birthday in August and the young Travel Agent asked why I was going. I explained about my brother having Parkinson's and she said her Grandmother ( who is the same age as me ![[Eek!]](eek.gif)
) has been diagnosed with it too.
My nephew told me on the phone today that the staff at the place where G is in care want to move him to a room closer to the nursing station as he is falling over more often, and can't seem to get the hang of how to use a zimmer frame. He might even have to give up his cat, which would be hard for him.
Huia - I knew, in theory, I was old enough to be a Grandmother but... ![[Waterworks]](graemlins/bawling.gif)
[ 03. April 2017, 06:39: Message edited by: Huia ]
Posted by Lothlorien (# 4927) on
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quote:
Originally posted by Sir Kevin:
TA, FOR ALL THE ENCOURAGEMENT, EVERYBODY!
SENDING A FAX ON TUESDAY TO A NEUROLOGIST I MET BRIEFLY AT THE MOHAMMED ALI CENTER EARLIER THIS YEAR SO I CAN FIND OUT WHAT FEES THERE WOULD BE OVER AND ABOVE THE BASICS....
GOD WILLING, SHE CAN HELP ME...
Check your caps lock key, please Sir Kevin.
Hope all goes well with your research.
Posted by Lothlorien (# 4927) on
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That is hard Huia, looking in from the outside at the decline of someone near and dear. We find it with our friend too.
Posted by Sir Kevin (# 3492) on
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I will soon be an OAP. No more working on a job I hate and people I cannot stand!
Posted by Sir Kevin (# 3492) on
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I am supposed to be fully retired now, but was hoping to see a bit more in the benefits department; I could use Medicare, still covered by my union plan which is not cheap and does not cover everything.
A typical day has m hanging with mostly older people, some of whom are in better health than they are. There are city-run facilities that provide recreation and lunch as well as activities. I am relearning the game of billiards. We have some field trips to sporting events and other outside activities.
Saw the neurologist a few days ago but cognitive skills are less than perfect.....
Posted by Golden Key (# 1468) on
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for all affected
Huia--
Would your brother be at all open to trying mindfulness/meditation? It might help with both calming and focusing. AIUI, many doctors suggest it. I have a different set of health problems, but it's been helping me for a long time.
I also find that online puzzles and brain-training games are useful for my cognitive stuff. (The "brain fog" that goes with CFIDS/CFS/ME, plus depression and migraines.) Even the Free Cell program that came with my computer is helpful.
If anyone wants links, let me know here, and I'll post a couple.
Posted by Huia (# 3473) on
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Golden Key, thanks for the suggestion, but after visiting him I think he's beyond being able to concentrate on the instructions now.
Huia
Posted by Stercus Tauri (# 16668) on
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I have an old friend - former colleague from work - who has Parkinson's, and they tell us he has Alzheimer's too. When we get together it's like a small miracle for a couple of hours - his memory clears, he smiles and laughs a little, and we exchange stories from years ago, though his voice is very faint now. His mind seems clear, and I'm holding a normal conversation with him. He doesn't live in the past, but being with people he has known a long time seems to release something that relaxes him. The only thing I know with certainty about Parkinson's is that it seems to be different for each person who lives with it.
Posted by Huia (# 3473) on
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I had glimpses of who my brother has been when I visited, then he would laboriously get up and shuffle away. In the few days I was there I learnt to visit for half hour periods at the most. My youngest brother did better as he had a stack of photos on his phone of all sorts of cars and motorbikes.
Huia
Posted by Stercus Tauri (# 16668) on
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quote:
Originally posted by Huia:
I had glimpses of who my brother has been when I visited, then he would laboriously get up and shuffle away. In the few days I was there I learnt to visit for half hour periods at the most. My youngest brother did better as he had a stack of photos on his phone of all sorts of cars and motorbikes.
Huia
I think that's a good strategy, to come with a supply of tangible memorabilia and talking points, though not too much, and not too many changes of topic.
Posted by Huia (# 3473) on
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S.T I agree about tangible things being easier. I've found one of his favourite Golden books, "The Little Taxi That Hurried" for the next visit, and I'll equip myself with some old family photos as well.
Huia
Posted by Lothlorien (# 4927) on
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Huia, did you know many of those have been republished. Soft card covers instead of thicker board, but basically a new edition. I found a lot in the supermarket and was building quite a collection for grandchidren when I left home. I have no idea what happened to them. Possibly the same as a sewing machine being kept for granddaughter, a table and chairs, my spinning wheel, an Ashford...
However, Scuffy, Tootle ,and many more should be around.
Posted by Huia (# 3473) on
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Thanks Loth I had seen some of them. A friend who is more detail oriented than I said that the 'Taxi' was missing a picture only page that was in the earlier edition. I think I'll keep an eye out for "Tootle" and "Noises and Mr Flibbertgib' (I think it was) and possibly "I had 5 Pennies", which may not be it's actual title. I also found a copy of "the Monster At The End of This Book" which was published much later. I used it when I was teaching. I've given it to the small children across the road.
Huia
Posted by Sir Kevin (# 3492) on
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I've been watching tweets from a young girl at Parsons Green even though I do not tweet and I am not currently in London. One man has a head injury but everybody else seems to be OK including our young video producer, Laura with the ginger hair.
Telegraph, a newspaper I read regularly, may have employed her.
Anyone near the Underground station nearby? The last Shipmeet that was near us in Russell Square nine years ago!
I read a lot of car magazines and have subscribed to Road and Track Magazine for many years as did my father back in the 60s until Mother said he could not replace his much-loved Simca sports car!
ª He did shop briefly for a Fiat 124 Coupe but went home with an estate car....
Posted by Lothlorien (# 4927) on
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quote:
Originally posted by Sir Kevin:
I've been watching tweets from a young girl at Parsons Green even though I do not tweet and I am not currently in London. One man has a head injury but everybody else seems to be OK including our young video producer, Laura with the ginger hair.
Telegraph, a newspaper I read regularly, may have employed her.
Anyone near the Underground station nearby? The last Shipmeet that was near us in Russell Square nine years ago!
I read a lot of car magazines and have subscribed to Road and Track Magazine for many years as did my father back in the 60s until Mother said he could not replace his much-loved Simca sports car!
ª He did shop briefly for a Fiat 124 Coupe but went home with an estate car....
Posted by Lothlorien (# 4927) on
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quote:
Originally posted by Lothlorien:
quote:
Originally posted by Sir Kevin:
I've been watching tweets from a young girl at Parsons Green even though I do not tweet and I am not currently in London. One man has a head injury but everybody else seems to be OK including our young video producer, Laura with the ginger hair.
Telegraph, a newspaper I read regularly, may have employed her.
Anyone near the Underground station nearby? The last Shipmeet that was near us in Russell Square nine years ago!
I read a lot of car magazines and have subscribed to Road and Track Magazine for many years as did my father back in the 60s until Mother said he could not replace his much-loved Simca sports car!
ª He did shop briefly for a Fiat 124 Coupe but went home with an estate car....
Sir Kevin, this is a gentle hostly reminder.. This post is nothing about Parkinsons and would be better in the general USA thread. Please consider that when next you post. The. Parkinsons thread is for support and help, not general chit-chat.
Thank you,
Lothlorien AS host
Posted by Sir Kevin (# 3492) on
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Sorry!
We are going to the beach in a couple of weeks. I shall see if I can still surf - there is a good beach for it near our lodgings.
I am fully retired now and still not used to it. I have made some new friends in my age group and I read a lot.
Looking forward to seeing my brother at the end of our holiday - we were all born in LA, but he's the only one of us still left there.
Posted by Sioni Sais (# 5713) on
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Sir K (and others with Parkinson's or loved ones with it)
I got the "all clear" from a specialist today confirming that I don't have Parkinson's Disease, but as mentioned in the Praise & Thanksgiving thread, I do have Drug-induced Parkinsonism (DIP), caused by 40+ years on anti-convulsant drugs.
My balance isn't good, I shuffle a bit, spill drinks and I find building and painting kits for my model railway very difficult but I'm damned if I'm going to stop, but it isn't so severe, just very frustrating and I'm aware that it's a minor inconvenience compared to how PD affects others.
Posted by Huia (# 3473) on
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Sioni, that is good news ![[Yipee]](graemlins/spin.gif)
The woman who led a Nordic walking class that I attended has moved on to lead a class for people with Parkinson's and their carers. Apparently walking with the poles benefits people with Parkinson's due to helping with balance and also the leg and arm co-ordination required. I know when I am Nordic walking I get into a rhythm that helps the movement and speeds me up to the extent that I can now walk in 40 minutes what used to take me an hour.
This may or may not be helpful to you, but I thought it might be worth mentioning as a suggestion to assist your walking.
Feel free to ignore it if it doesn't help - I do tend to have a missionary zeal about Nordic walking as it has made a huge difference to my life.
Huia
Posted by Golden Key (# 1468) on
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{{{{{Sir K, Sioni Sais, and anyone else with or affected by this}}}}}
Sir Kevin: If I may suggest, a life jacket while you're surfing? Just in case you have difficulty.
FWIW, YMMV.
Posted by Sioni Sais (# 5713) on
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Thanks, I'll look up Nordic Walking. I know a Nordic Walker at work who might be able to put me in touch with a group.
Posted by Sir Kevin (# 3492) on
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GK - I don't own one! A seven and a half foot surfboard provides sufficient buoyancy.
Posted by Sir Kevin (# 3492) on
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I'm getting worse but I am seeing the orthopedic doctor today.
God willing, I hope they will find a study to do before I get much worse on Parkinson's and allied diseases!
Posted by Moo (# 107) on
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Sir Kevin
Moo
Posted by Sir Kevin (# 3492) on
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Tuesday is when I see orthopedic doctor. Wanted to go to the cinema, but will see him first. My f-in-law gave me a zimmer frame that he no longer used. I have sporadic pain in left foot - perhaps he can sort it out...
Posted by Piglet (# 11803) on
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Sir K.
Posted by Lothlorien (# 4927) on
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Sir K, have sent you PM.
Posted by jedijudy (# 333) on
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(((Sir K)))
Posted by simontoad (# 18096) on
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Late to this thread. I had a Parkinsons scare some months ago. It turns out my symptoms are medication-induced. I've just read through your journey so far, Sir K. A debilitating disease and retirement... (((Sir K))). I like how you're getting out there and doing stuff. Its affirming to hear about your fight to live, just like that commentator.
Huia, I want through something like that with my father, who had vascular dementia. One of the hardest days was seeing him compulsively stand up and sit down at the lunch table while I was trying to assist him to eat. I was focused on trying to help him in the moment, and the pain/horror didn't sink in till later. That was maybe 3 years ago. He died maybe six months later.
Posted by MaryLouise (# 18697) on
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(Sir K)
[ 02. January 2018, 04:33: Message edited by: MaryLouise ]
Posted by Sioni Sais (# 5713) on
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(Sir K). Keep fighting it.
Posted by Sir Kevin (# 3492) on
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This is actually Zeke. Wanted to let you know (he asked me to write this) that his diagnosis has been amended to Lewy Body Dementia, which is kind of like having Parkinson's and Alzheimer's both. The dementia isn't too extreme, mainly forgetfulness and being unable to think of the right word. Also he often becomes very confused. He is unsteady on his feet, and we are glad he has the walker/zimmer frame to keep him from falling. Prognosis is not as good as Parkinson's.
Prayers would be appreciated.
Posted by Lothlorien (# 4927) on
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for St Kevin.
Posted by Piglet (# 11803) on
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Zeke, very sorry to hear that. Prayers continuing to ascend for you both.
Posted by Amanda B. Reckondwythe (# 5521) on
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My mother had Lewy body dementia, so I am familiar with the symptoms and prognosis. A neighbor where I used to have my condo also had it.
Prayers ascending for Sir Kevin and Zeke.
Posted by Japes (# 5358) on
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For Sir Kevin and Zeke.
Thank you for the update, Zeke, I had been wondering how things were.
Posted by Huia (# 3473) on
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Sir Kevin and Zeke
Huia
Posted by simontoad (# 18096) on
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Sir Kevin and Zeke
Posted by Ian Climacus (# 944) on
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Sir Kevin & Zeke
Posted by Gee D (# 13815) on
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And from us as well.
Posted by Wet Kipper (# 1654) on
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The shipboard memories thread, and people thinking about "where has X gone" had me thinking of Sir K, looking for posts, and I found myself here. ![[Frown]](frown.gif)
for Sir Kevin and Zeke
Posted by betjemaniac (# 17618) on
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*when you discover and read a whole thread in a night*
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