I'm wondering how long people with PD can have a decent life before going disabled. I know it depends from person to person but would be interesting to know for how long people on this forum have it. Can it go more than 10 years?
Length of life with PD: I'm wondering how... - Cure Parkinson's
Length of life with PD
Written by
ion_ion
To view profiles and participate in discussions please or .
35 Replies
•
More than ten. Until you die from the flu/pneumonia.
Bsweiss in reply to
Dx in December 99, approximately 2 years into it. Great 10 years then went for DBS in yr 11. Lost speech, severe depression, etc.
Now going on 65 years old (pd now 22 yrs) and mind is getting. garbled and while still independent, losing battle on all fronts. Now, just putting in time -- Hope for quick end. As I am suddenly slipping fast.m
Yes. I was diagnosed 14 yrs ago & still doing fairly well.
Wots the secret?
Rock Steady Boxing for 11 yrs, Healthy dark chocolate, 3 Tbl of coconut oil, Emergen C, Krill oil, Vit D3, Protandim, 4 Parcopa ( dissolving Sinemet), 2 Azilect, 2 Amantadine and retired 3 yrs ago (stress level went down), positive attitude.
Is dark chocolate good for PD? I taught the opposite.
Dark chocolate is really good for you if you choose one that doesn't have a lot of sugar or fat in it. It is high in antioxidants and has a high ORAC value. I eat Xocai chocolate which is low in sugar & processed a special way, but it's expensive, but not as expensive as having a Starbucks everyday. Here is a link you can check out about dark chocolate & antioxidants.
draxe.com/top-10-high-antio...
Wish you all the best
i always feel good after eating chocolate, but i eat milk chocolate. specifically trader joes belgium chocolate. i know dark chocolate is supposed to be good for you, but i always feel more alert and energized after eating the milk chocolate. i always have a big stash and eat some every day.
I am at my 64 12th year have not slowed down yet. Lots of meds 800 pills a month.
800 wot you on ?
I take 3 25/100 C/L and 1 50/200 C/L ext release 6 times a day
and 2 6mg requip 1 time a day
I was curios to know if there are more people doing well after 10 years than people not doing so well. Thank you for answering. I hope more people will tell us about it. It is very helpful and encouraging.
12 years and doing well....
30 years/ diagnosed 3 months ago/ doing well lol 
You are 30 years old?
My dad had PD for 23 years......did NOTHING but meds that entire time. The last 3 were questionable as to the quality of life....but the rest were fairly good. He died after falling out of bed...broken hip they decided not to repair (82yo). Stopped eating due to pain/morphine and died two weeks later. I never heard him complain or feel sorry for himself. I intend to do the same. I do not want to go into a nursing home EVER, so I promised my family I will stop eating and choose to pass on if that becomes necessary. I used to work in several fancy nursing homes...I'll take a pass. My dad was in a very fancy nursing home the last three years (he had expensive taste and spared no expense towards himself).....it sucked. Live life to the fullest every day....do everything you can to slow the disease. The rest will all work itself out. Don't worry about the future....today is a gift.
Diagnosed 15 years ago. Other than "freezing of gait" doing extremely well. However, without DBS I would be curled up in bed 24 hours a day with horrible dystonia. With DBS would have never dreamed I'd be doing as well as I am 15 years later.
My husband passed away in 2016. He had experienced the progressive symptoms of what they diagnosed as Non Typical Parkinson's, then SNP,thenParkinson's again, then "Parkinsonism" since 2002. We did everything possible with diet, some exercise but he had a recurrence of prostate cancer that caused his death.
In retrospect, there were a couple of mistakes made along the way and the biggest was losing weight so quickly. He dropped 45 lbs when he began to chew food so slowly and had difficulty swallowing, so if you see that happening, be sure to supplement with calorie rich nutritious liquids like smoothies. He did that but it was too little, too late. He took supplements, began to eat a"cleaner" diet. Exercised the throat muscles, etc. He did that to avoid aspirating which can cause infection. He had 4 rounds of pneumonia along the path. Parkinsons was difficult, but it was sciatica (from sitting) that caused pain, so try to walk and move around. Doctor told him to remove items from the back pockets and don't sit on wallets, etc. He had special cushions. Sinamet helped his movement but caused facial tics. He was almost 83 when he passed, playing online competetive bridge until the last. Wishing you all the best
symptoms started 16 yrs ago. diagnosed & started sinemet 12 yrs ago. i will be 61 next month.
a "decent life" and "disabled" are very subjective. but, this is my list.........
what i cant do: drive (safely, so i dont do it), stand on ladders, walk up or down stairs carrying heavy objects, dance, draw/paint, write neatly, sing on key, hold the phone without cutting people off, carry drinks into the next room without spilling, balance on stairs while shoveling snow, walk in the dark and keep my balance, and probably some other things. however i can do alot of these things when in "off" time from sinemet (at night or early in the morning,) but then i am so slow, emotionally flat and tire easily that i would rather have the sinemet.
what i can do: keep the house up, cook, sew, play cards & board games, go shopping, walk long distances, garden, read, take care of myself, my teenage daughter & mother (when they need it), and my cat.
what bothers me the most: not being able to eat what i want-when i want it, not being able to eat with friends or eat out, without being like cinderella and hurrying home (because my next sinemet dose will not work), not having appropriate facial expressions (smile looks like a grimace or flat "duh" face), gettting "teary-eyed" face & voice at what appears to be inappropriate times, seeing how people look at me, constantly having to be aware of the time (i take sinemet every 2 hrs).
I taught Sinemet should help you with all of these problems, especially tremors and balance.
Did you think about having DBS?
i dont have tremors, my symptoms are bradykinesia - extremely slow movements, rigidity, mask-like face, weak monotone voice, dragging of feet; im like a zombie. the sinemet works great on all those things, but then i have dyskinesias, but it is the lessor of two evils. i do not want to do anything invasive. and my neurologist said that dbs mostly helps with "off" time, which i have very little of.
Diagnosed in 2010 and medications are working ; Mirapex 3x daily and sinemet 4x daily. Very thankful I'm moving about and doing everything possible to educate myself about this disease. Everyone is different and what works for one may not work for others. Stay positive and take one day at a time. Keep on keeping on......
More than twelve years - Current daily total in Levodopa, comprising Stalevo during day & Sinimet long release at night = around 450mg. (& not exceeding 575mg. on any tougher days).
How long each of us has before we're stuck in a wheel chair or otherwise disabled by this monster varies widely. I've been fighting the good fight for ten years. I started noticing my first tremors in 2008 at age 52 but it took 3 neurologists to actually diagnose Parkinson's in 2011 when I couldn't open a doorknob with my left hand anymore. During that time no one one but me knew I had anything wrong. My symptoms were fairly subtle but got more noticeable over time. I have tried all the different meds but have had the best luck with Sinemet every 2 1/2 hours during the day/evening. (Total 6 per day.) Most folks still don't notice my symptoms, so I feel good about that. Although my inner circle of friends not only know of my situation, but they jump in and help me with certain things without being asked. (Helping with my seat belt or putting my coat on. I still live independently, drive, handle my finances ... all the things of daily living we all face every day. What I have the most trouble with (especially lately) is my fine motor skills going in the tank . Handwriting is difficult. (My occupational therapist suggested I print whenever I have to actually write something, as it seems to produce more readable text compared to writing in cursive.) Buttons and zippers - ugh. Putting my coat on is always a challenge. I'm an author and speaker and have difficulty with my voice from time to time but the Big and Loud program has been really helpful with that. Sure can't type nearly as much or as easily as I used to. Definitely need help with things like opening bottles and jars. I don't need a cane or walker and i don't have trouble walking or freezing - in fact I've walked 3 miles per day (about an hour) for the last several years and I truly believe that has been a big part of why the disease hasn't progressed faster. Just last month I added Mannitol to my regimen with some good results with my fine motor issues, although no changes in my tremors, which are still fairly controlled by Sinemet. Just ordered some Thiamine this week - want to see what that might yield. I also discontinued my anti-depressants and feel much better! But out of everything, my attitude seems to be vastly important in dealing with this monster. It's so easy to just give up and/or get angry and depressed about our situation. It's hard to conjure up feeling happy when what you really want to say is "What the hell did I ever do to deserve this?" My mantra is, "I may have Parkinson's but it doesn't have me." And I picture myself as Wonder Woman going to battle with all the bad monsters out there ... and she never goes down without a fight!
I think the answer to your question depends upon your lifestyle and how much or how little medication you take. I have lived, Pd medication-free since 2002. Read my profile and contact me for further information and help.
Not what you're looking for?
You may also like...
Clinical severity in PD is determined by decline in cortical compensation
complaints people have. This is evident from a publication by the Radboudumc in the Netherlands....
What is the percent of people with PD that B1 has helped?
Would any one know of a study or anecdotal evidence of people with PD that B1 has helped?
If it...
It’s a lonely road with PD.
family who are interested in the research you do? My children are more interested than anyone else...
Is PharmaGaba good or bad for PD folks?
pain, have read this can be very difficult. People have posted (on reddit) it is worse than...
Young Onset PD is a vastly different experience than PD as a senior citizen
when you likely have 3+ decades to go.
People with YOPD are far more inclined than the elderly...
Craniosacral therapy - my experience & a PD case review
PD Awareness & Advocacy Campaign 
Balancing diabetes with PD
Irregular platelets in PD
The Social Consequences of PD
