Parkinson's Movement
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Parkinson's duration

Hi all. I am reading about the 5 stages of PD and can't find an approximate or average duration of the whole process. Yes, I understand that everyone is different, but there has to be an average available somewhere... Does anyone have a link to a serious study/survey on this?

Also, is there a difference in life expectancy between tremor and non-tremor dominant PD? Many thanks.

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I know you don't want to hear this, but it really does make a difference in the individual:

news-medical.net/health/Par...

I saw another article that said 16-20 yrs but I don't believe someone that's up in age will live that long. I was diagnosed at 46 & I asked my doctor how long it would be before I got bad & he said 7 - 10 years. I am now 60 & still doing fairly well, but I work hard at it, some just give up.

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Not this time...

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laglag.... good to hear. This is what we all want to hear. Can you briefly state what meds and/or supplements, exercise etc. you take/do. Thx.

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I take 4, sometimes 5 C/L, 2 Amantadine, 2 Azilect a day. I also eat 3 small healthy dark chocolates (Xocai) dipped in coconut oil, 1 Protandim, 1 500mg Krill oil & 1 packet of Emergen C per day. And 1 2,000 iu of Vit D3 every other day. For constipation I have been eating about 1/2 cup of blueberries with Cherrios & almond & coconut milk/ day and about 3 handfuls of mixed nuts with raisins & cranberries.

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Lag lag......you are the first person to have mentioned Protandin as part of your regimen. I swear by it for general health benefits and have been taking it for over 3 years. I don’t "promote" it as a business but I am a sworn advocate for it. 👍

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I had a look at Protandin online (wiki) . Includes turmeric (curcumin) and Green tea. I would be tempted just to buy those two separately rather than spending much more on Protandin.

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Alexask, I thought that too when I first heard about it. I had been taking turmeric for a long time before that too. However, the complex and precise formulation of Protandin is the reason it is beneficial. There's a lot more to it than a dose of turmeric and green tea. Lots of YouTube videos to check out and hear the basic and updated info from the horse's mouth, if you wish.

The cell regeneration aspect of the formulation is the basis of my belief in this product. I have sailed thru local and family flu 'epidemics' and all such winter/summer infections since taking Protandin on a daily basis. I totally believe it has boosted my immune system and is worth every penny. Getting sick with the flu or a bad cold along with the PD is not fun! I have had great feedback from everyone that I have recommended Protandin to and full commitment has been made by five out of six people. (Not just PD victims) Believe me, I don’t go around promoting the product. I only get involved when asked what I take on a daily basis as a supplement. Each to their own!

Cheers.

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Amazing laglag.......!!

Of course it is a multi-causal approach, but which issue/thing in all those years, you think have you profit the most ??

(and are you still doing ?)

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I've been following the things above that I just replied for approximately 7 or 8 yrs, except I just started the nuts, blueberries & Cheerios about 6 mths ago. I think the most important is Rocksteadyboxing

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Grrr, they don't know that (until now) in Switzerland.

Do you find it more useful than LSVT ??

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I haven't done LSVT, but I know several that have & it helped them but they didn't keep up the exercises after the 4 weeks was up. One thing that's good about RSB is the commeradie & everyone is motivating eacb other.

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I did lsvt and tried to keep up the exercises but after a few months got bored. I did improve as I’m less stiff and have better balance and range of motion.I do exercise classes at the gym which are fun and provide a social outlet.. RSB has a cost whereas lsvt is run by pt and or licensed professionals and is ofte covered by insurance. I’m starting a program called PWR soon.

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Lionore, I just did a search on PWR & briefly read about it & it sounds like a great program. Keep us informed on your progress! Keep fighting!

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Everyone keeps saying that LSVT BIG is covered by insurance. I did LSVT BIG with the pt department at Allied Services. It was covered by my employment Geisinger insurance, but it had a $40 co-pay per session, three times a week.It was a tough six weeks.

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Expensive and intense!

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Thank you, Janvan, for mentioning LSVT. I just looked it up. Sounds good. Didn't know about it before! This place is so good and informative.

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Aussie-Doodle, besides RSB, check out the program Lionore mentioned, PWR, it sounds good also.

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Hi laglag !

Can you send me the link of Lionore ?

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laglag. .....I just responded to you about Protandin and now I am delightfully surprised seeing your recommendation for boxing. For me and 8 other female victims of PD go to our local boxing club and our coach, Peggy, has developed a boxing program for us which we do twice a week. It has been my life saver exercise-wise. I can do it even though I can’t do much else in physical exercise due to painful back, hips, neck and shoulders following a car accident six months prior to being diagnosed with PD.

I abhor the sport of boxing but just love the benefits of this adapted boxing program for PWP and other movement disorders. I wish everyone could be as lucky as it’s just not readily available outside of major centres. Most boxing clubs aren’t interested in offering or developing such a program. Sad but true.

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Hi. I'm so happy you get such great benefit from the boxing. It's fun & it really helps, doesn't it? And, Protandim. I don't sell it either and you are the first person I've heard that uses it also. I believe I've been taking it for around 5 yrs and I won't go without it. If you look up all the ingredients, they have benefits for your overall health. Keep fighting!

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One more thing, you mentioned the boxing not being readily available. Have you looked on RSB's website lately? They have over 550 affiliates now. rocksteadyboxing.org

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I live in British Columbia, Canada. Rock Steady was the basis that our coach used to develop our current program. Then she has done lots of research and built a program that takes us even further. Our group started two years ago with three people and it has been a true life saver for all of us. 🥊

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What brand of protandim do you buy I’ve not heard of it? I started boxing recently thanks to you laglag!! Although rock steady wasn’t close enough a former college coach started this and I’m so glad I’ve started it!

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Great! Protandim is made by LifeVantage. Ingredients:

ASHWAGANDHA ROOT POWDER

Bacopa

Tumeric

Green tea extract

Milk thistle

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Thanks so much for the info!

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Hi, laglag. Your comments are encouraging. Like Aussie Doodle, I have been researching the progression time. I found a nice journal article, which I can’t find, that looked at duration to get to Stage 2-4 for patients with early onset and patients with different Parkinson’s type. Prognosis was best for early onset and tremor dominant. I recall 15-20 years to get to 2-3 was reasonable for an early onset, tremor dominant. Must have been the same article that you remember.

I am not tremor dominant, but I am young (42). I’m curious, are you still working?

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Thanks GinnyBerry. I didn't start out with a tremor, but in the last maybe 5 yrs have developed tremors on my left side. My PD started out with rigidity, slowness on my right side. I was stiff, slow & did not swing my right arm. Now my left side and my head shake. Meds will usually take care of the tremor. Go figure? Everyone is different! But, to answer your question, no I am not working. I retired 4 yrs ago & so glad I did. Getting away from the stress helped quite a bit & then it gave me more time to exercise & more time to research. Luckily, I was in a position to retire a little early. So, some advice, go see a financial advisor & have a plan, if you don't already.

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Thanks for your reply. Maybe I’ll start a separate post on this. I enjoy my job — i’d worry that I’d be far less active, have fewer social interactions, and engage my brain less (I work in research). But I must admit that I can’t avoid feeling stressed sometimes.

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I recently struggled with the same things. Then I recalled what a retiring VP once told me about retiring..."you'll know when it's time." After careful consideration, I realized that the time is right. I will be retiring soon at age 68 on the 42nd anniversary of my original date of hire by my current boss (yes, the same one for 42 years). Whenever he changed jobs, he took me with him. I have already started rekindling some of my social relationships with old friends who I had neglected for too long, always too busy....and I am discovering what volunteer opportunities they have been pursuing in retirement. I had that same fear, of being less active, losing social interaction, losing brain power. But you just have to plan for these things as much as you planned for financial sustenance in retirement. Even if you enjoy your job, the stress of work is not a good thing for a PWP. Everyone I have spoken with says it is the best thing they ever did. I am also starting to think that I will have better healthcare insurance on Medicare than I do on the job. So give it some thought, if it is a real possibility.

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I miss my former colleagues, but have more time for friends in my exercise classes, old friends, and members of spiritual support groups. I didn’t retire early, and now I’m trying to undo the damage done by too many hours sitting in front of a screen. Financial planning is a great idea, but even more important is to be honest with yourself. What is necessary and what is “nice to have.”? Case in point, I would love a new car with the latest safety features, but we drive so little, and never in bad weather or at night, that our 7 and 16 year old clunkers are fine, especially with the backup camera and oversized rear view mirror that my SO installed.

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Aussie -Doodle don’t waste another second wondering.. get on with the here and now . Make the most of every day in a positive way . It can be horribly hard but find some coping strategies......music is mine.

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Bridielena: I'm sure you mean well, but trying to reorganise important events like major travel plans, retirement, etc. according to time and capacities: cannot ignore/denie this is a degenerative disease.

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Thank you very much Aussie-Doodle, I try to be also realistic.....

The mean issue now for me is "how long will I be able to work"

And not to spend too much money on supplements .........and decrease my internetresearch ..... :-(

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Take a look at this chart: educationismedicine.com/pro-pd

Outcomes are all over the map. More important is to ask what you can do to stay in the good QOL segment. Do take a look at high dose vitamin B1 discussed elsewhere on this forum.

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Hi Bear. I took the survey (your link) and scored 1521 = lower ''poor'' quality of life segment. Did try the B1 for 5 days but got feet and leg cramps, plus more tremors than usual with movement. So stopped that. Waiting to receive my order for Mannitol in about 10 days. Plan to try Mucuna if Mannitol doesn't work. Tks for the link.

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Aussie I wish ,oh how I wish, I didn’t have this horrible thing too. I wish I could arrange travel etc as I once did but I can’t and it’s hit home just now as I left my bed, unaided, fed Lady Airlie my Birman Kitten, went to the bathroom, put on the kettle for my first cuppa of the day, turned to walk to the next chore but COULDN’T. I was frozen just like that virtually no warning.....no sticks close by or my walking frame. Grabbed the walls and inch by inch have made my way to a chair. Fortunately I have Madopar stashed in various areas around my home and got some into my mouth where they are dissolving. I now need to be patient for at least half an hour.

Not so long ago I couldn’t do what have just done though as I’m now on ER Madopar which I take about 9.00 pm .....only at night. It’s given me a better sleep....thank goodness as I was only getting 4 hours or less.

Now I will put my music on, grab my code cracker book and wait it out.

I plan to shop but my plans depend on what my body dictates. I’m not permitted to drive anymore and that sucks. All these things tell me the future is ‘like a box of chocolates’ but I have hope that someone out there is on my case and improvement is just around the corner.

I honestly don’t want to know the stages of PD. My 2 female friends here, are different to me with their symptoms and on different meds but we all have PD with some good days and some horrible days. I can’t let depression into this scenario either as I reckon that would be catastrophic.

I’m coming off a trial of Exenadine , a weekly injection. It hasn’t been miraculous but it has given the odd brilliant day. Hoping, after 2 months monitoring me off the Exenatide, I still get the odd brilliant day convincing my Neurologist to give me more time back on it. Had 6 months of it. ( this is the ‘hope’ I mentioned above) There has been an article written in The Lancet about it’s promising results.

Have had PD 13 years. Just retired when I got the news.

You know what though, as a final thought, I’m still able to think and read and contribute coherently in discussions with my family and friends. Not all bad.

I’m an Aussi too.

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I've read many articles and continue to wonder about the same thing and I keep getting the same answer, nobody knows. Sorry I wish I could give a better response.

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When I was diagnosed at 62 I was told 5 good years, then the slippery slope. I started cycling at 80-90 rpm as per Pedaling for Parkinson's protocols, rode across Iowa (6 times now), climbed Mt. Kilimanjaro, hiked to Annapurna Base Camp, then Machu Picchu, rafted through the Grand Canyon and am now preparing to hike around Mt. Blanc. Our rule of thumb is to look a year out, make plans and reservations, cycle 20 miles 4-5 times/week, climb thousands of steps and go for it. I never would have done any of these things if I weren't intent on living a full life. BTW, I'm 72, female, and never was a great athlete prior to PD. Now my doctor describes me as "extremely fit". I. also wrote a book you might find helpful.

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Lovely to get an update! We are on a road trip in Colorado at the moment.Have Done a lot of the high passes 11000ft + crossed the continental divide skied a bit and done 8500+ steps most days at altitude. I’ve done all the driving nearly 2000 miles! Already planing our next trip, hopefully a cruise from Rio to Santiago round the horn via the Galapagos South America.

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Link us to your book, Nan. Don't be shy!

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If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth? Courage, Tenacity and Love Meet Parkinson's Disease by Nan Little

Amazon

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I was 52... she said I would have 10 good years and I did . Like you travelled and travelled and travelled the world but no structured exercise. We had just retired. THEN it all came crashing down. It’s a skirmish now with PD wanting to win . I have a shield held against my chest to prevent the arrows penetrating. It’s a determined condition though.

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NanCyclist has also done very well wit her exercise program. Exercise can be tough stuff but it helps & if you put your mind to it, it can be fun.

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As noted...it depends... how old are you?... were you just diagnosed?... what meds are you on? Some meds control symptoms... others have arguably slowed progress. Are you in good physical health? Do you exercise regularly?

I am 74... diagnosed 4 1/2 years ago... on Azilect...still work full time... went ocean kayaking last year in Sea of Cortez... planning a white water rafting trip this summer... exercise regularly... walk everywhere and have had hardly any noticeable progression. My neuro says I may need to walk with a cane in ten years. I plan to buy myself a really nice cane.

The point is you should expect to live normally for some time and get on a disciplined regimen that makes some time a long time.

PS I work in Artificial Intelligence and believe AI will significantly speed breakthroughs in cures including one for PD. We just need to hang on and not lose hope.

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It’s a designer disease.... far too many variables with significant impact to predict. Regarding the tremor VS non tremor, from what I have concluded is that the non tremor is usually more devastating.

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Thank you Etterus for your reply. What you say is pretty much what I concluded with the info I had prior to my posting this question. I thought this forum would provide info I had not found yet, but turns out that is pretty much it... Tks

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Etterus , what do you mean by "the tremor is usually more devastating" when comparing tremor vs non tremor.?

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What I wrote was” the non tremor is usually more devastating “. By that I mean the progression of the disease is typically more aggressive and more devastating with nonmotor symptoms.... particularly psychological.

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I have been doing similar research and found some great articles, which now I can’t find. So I did a new search.

Here is a seminal paper from 1967 (10,000 citations). I’d like to think a lot has changed since then.

pdfs.semanticscholar.org/9c...

This is a more recent review and focuses on motor function.

jamanetwork.com/journals/ja...

Researchers are trying to define different types of PD. If you figure out what category you are in, you can do more targeted searches.

ncbi.nlm.nih.gov/pmc/articl...

I’m assuming you know about Google Scholar? It allows you to search research papers. You won’t have access to a lot, but some have PDFs or are publicly available due to their source of funding.

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You can also download the book “the peripatetic pursuit of Parkinson’s disease” for free by going to the Parkinson’s creative collective and the download instructions are on that website. The book covers Parkinson’s from beginning to end and almost all the pages are written by people with Parkinson’s. If you really want to know how we go from A to B to C, this is the book.

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Here's the link for pdf of "the peripatetic pursuit of Parkinson’s disease" (Once you click the link, be patient--it may take almost a minute for the download on some machines):

parkinsonscreativecollectiv...

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Many thanks. I'm not good at sorting that stuff out.

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My Dad is at 20 plus years, he is 72 now. He's pretty bad now but can still walk and communicate. He is in long term care. Watching him over the years i would have to say the biggest deteriorations in his health have resulted from hospital stays and being immobilized for extended periods. Otherwise the progression has been gradual.

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I reckon on average you get about 5 good years, 5 good with fussing with meds, 5 impaired with meds and 5 in a bad way. I plan to spend all my money by then and the gov can look after me! I guess we'll have to wait and see - I have been impressed by the mannitol I've been taking seeming to reverse some symptoms.

I'm hoping that in 20 years I'll be able to legally choose my destiny if it gets too bad.

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Me too Astra........but it has to happen in much less time than 20 years. I will not spend my last days being a burden to my family. I seriously don’t see the point of hanging about if my days are spent in pain, or being totally reliant on others. No thank you! I just hope I can do it legally so no one has to be held responsible. 🙏

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Aussie-Doodle: Here's an answer. See the 2nd table in the link below for the average Time Between (Hoehn and Yahr) Stages. Summing up all the durations shown, the median total time from Stage 1 (Unilateral involvement only) to Stage 5 (Wheelchair bound or bedridden unless aided) is 157 months or just over 13 years. (As you know, 1/2 of the patients take less than the "median time," 1/2 take longer, so the median time is a kind of average) :

en.wikipedia.org/wiki/Hoehn...

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Many thanks, Dumpelkin, for the table. It is exactly what I was looking for. It will help when discussing with family for upcoming years and taking major decisions. I congratulate you on the pertinence and quality of your posts and contribution to bringing info to this Web site.

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Thanks for the kind words. Wishing you all the best.

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My boyfriend was diagnosed 11 years ago but you could see signs of it a couple of years before that. He is still working as a auto mechanic. He keeps moving and exercising. he is going to stop working soon as it is getting harder but he is very active and just put new flooring in his house and installed new carpeting by him self. Just keep moving!!!! I think he is still in STG 2

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Hello DebiChris. Thank you very much for the info. Good luck to your boyfriend.

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