Since being diagnosed five years ago, I have read virtually everything I can find regarding Parkinson's Disease. Today, I had a routine check up with my primary care physician. She stunned me by saying "Hopefully, your symptoms will remain mild for decades."
I had always assumed that an alarming decline was more or less inevitable, even though the rate of decline varies somewhat from patient to patient.
This excerpt from Medical News Today seems to validate what my doctor is saying. For those of you who are newly diagnosed, try to remain optimistic. Doom and gloom are not necessarily inevitable.
People with this disease
may experience mild or moderate symptoms for decades. Some people may find that symptoms progress quickly, while for others, symptoms may develop slowly and never become severe enough to affect daily life.
Written by
jimcaster
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Glad youre doing relatively well, my good friend! I, too, am surprised at the difference between where I am today and where I thought I would be, health wise, ten years into this. Ten years ago, when I was first diagnosed, I expected to be wheelchair bound within 5 years and dead at ten. Today at year ten, I went to the gym this morning and blasted my legs on the weight machines, went for a mile walk around the pier and jumped into the ocean for a nice swim! Just to clarify, I did not jump off the pier! The pier is on the Halifax river, just across the bridge from the ocean. Here's to mild symptoms and slow progression! With medication, of course!
I too, am surprised that I’m doing pretty well after my diagnosis over a decade ago.
Similar to you, Jim, My neurologist said I could be in a wheelchair in 6 to 10 years but here I am 10 years later and I’m still walking and can even go out dancing although I do have trouble with my gait and shuffle sometimes when my medication is not at its optimum .. I’m still playing music, even though my voice is different - a little bit weaker and not as rich sounding- but hey, I’m still able to get gigs now and then !
Life can be good despite the challenges. And there are always silver linings, right?
So there is hope —especially if we take care of ourselves and mind our nutrition. I’m trying to do as Dr. Laurie Mischley suggests. I trust her judgment.
Jim, That’s great news. I’m 11 years in and was doing well but after my DBS I just can’t find my sweet spot. My days are a roller coaster. I do still try and run 3 miles a day(no marathons at this time) and go to the gym a few times a week. I find it exhausting fighting my body but I try and stay hopeful. Take care and keep pushing through. Karen
Not much lately B1, grounding. I find that work great for my energy and some herbs in tea form motherwort, passion, flower, lemon balm, blue vervain, to name a few
Okay: I am on the inside looking in. My wife has the pd. However, thanks to this site . No person in this fight alone. I really think we have some Great Minds and support against this disease than ever before. I don't believe there will ever be a one size fits all cure or treatment. But I have to believe that something great is just around the bend. My friend I will say that in my short span of being on this site that I have witnessed some of the greatest fighters this disease has ever encountered.
Thanks @jimcaster for showing me that it’s ok to celebrate the fact that my symptoms are accelerating very slowly 11 years in. Having been at WPC a couple of weeks ago I felt a little guilty at times for this, seeing folk struggling with rapid onset after 2,5,7 years. Like everyone on here, exercise and positivity are important as is seizing life and every opportunity that comes along. I didn’t choose to have PD but I can choose my reaction to it.
hi so lovely of you to share. Hope is a powerful tool we have. My hubby is 54 diagnosed 2.5 years ago. We are trying everything to stay off meds but starting to get my head around that it may just be another powerful tool in our healing box. Pls share what meds you are taking . Our neurologist suggested azilect. My hubby took 1 and said he felt out of his body and never wants to feel like that again
hi…I was taking Madopar…and it works for me…..now I take Stalevo…which is madopar and another drug together…it works for me…I am 10years in…I walk daily and do other exercisers as well…
I was reluctant to start meds fearing that would hasten the development of side effects, particularly dyskinesia. My MDS explained that dyskinesia is not hastened by the duration of levodopa but by the concentration. The disease progresses whether you take meds or not. She advised that a delay would simply result in me being increasingly symptomatic in the early years when I don’t need to be. I am only 3 years in but my 25/100 x 3 Sinemet hasn’t changed.
My experience and understanding is similar to donhoff. I tried to avoid Carbidopa Levodopa (generic sinemet), but it works wonders for me. I take one 25/100 tablet 4 times per day.
My advice on the meds if you decide to try them is ask for the smallest sized tablets and cut them if you can and take 1/4 of the dose for a week or so. See if it helps. If it does hold off increasing and only increase the minimum at a time.
Half the progression and bad experience I believe are due to too much medication causing side effects that require another drug. I think natural dopamine slowly reduces so replacement dopamine should be only just enough to match the natural decline .
Oh, that's why it sounded vaguely familiar. 🙂 Regrettably, I don't think Buntanetap made any difference, good or bad. I suppose it could be argued that no change means the slowing or stopping of progression, but six months isn't enough time to tell. I can't feel any difference...
Thanks for the reply. I suppose it’s very difficult to tell until the results come out as you may have been on placebo and you may have been worse but for the drug. Or alternatively it just doesn’t work, or on a longer time frame. All the best.
I'm finally learning why PD trials take so long. The disease progresses so slowly that I think it can take years to determine if progression is actually stopped or slowed. Even as I type this, I realize "slowed is virtually impossible to determine. How do I know how I would have been if not for the drug?
It's impossible to tell anything about progression on an n=1 basis. Assessing progression needs a big sample population and a minimum of 12 months. Probably 24 months. And a placebo control. The exanatide trial is on that basis and due to report soon.But the hype around buntanetap focused on some apparent immediate symptomatic relief, from a tiny trial population over a very short period of time.
And there is precious little evidence of that in the current trial. And the current PR management effectively pretends that phase 2 hype never happened and the trial is all about longer term disease progression. And the trial, with an 8 month duration is very poorly designed for that purpose
nice to hear your testimonies but when you are alone, suffering from PD and with 2 brothers suffering from Ataxia to manage it is very difficult to stay positive. pd symptoms 6 years ago, i start sinemet 2 years ago, dopamine agonists are fine for PD but they destroyed my stomach and i had to stop them. The neurologist is difficult to contact...
I'm sorry to learn about your negative experience and I understand that my relatively good experience is probably just a result of dumb luck. Hang in there!
Thanks for sharing your optimistic outlook. I trust this site to keep me informed of any new promising developments in treating pd. From time to time i read accounts that are depressing and discouraging. I try to erase them from my mind and not to succumb to auto suggestion by keeping my imagination in check.
I’m a patient of dr. Mischley and share her optimism in trying to play the odds for arresting progression by diet and life style. I also have been taking high dose of B1.
I was diagnosed 10 years ago. I resisted medication until 2 years ago. I have lived a relatively “normal” life and I remain optimistic (most of the times).. thanks everyone for your company in this challenging journey.
Hi Jim, I haven't been on here long either, but my husband was DX in 1998 age 38. With it being Young Onset his progression has been slower, but here we are 25 years on and it's amazing how much he can still do, run, cycle, drive, argue (really well), very articulate - so absolutely Jim, there is a lot to be thankful for. Attitude and exercise as much as possible we feel is absolutely KEY !!! He is on Sinemet 2x200/50 CR & Sinemet 1x100/25 - 4 x daily. Long may it slowly progress..
We are not warriors here, but we combine intelligence and common sense with the strength of discipline: the important thing is to well survive to PD and live.
Thanks for the message of hope!
The sun never sets on CURE PARKINSON HEALTHUNLOCKED.
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug, is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon. cureparkinsons.org.uk/news/...
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.
I'm one year shy of the ten-years-since-diagnosis club.
I'm in the best physical shape of my life, but I'm worried about cognitive issues. My short term memory is not great. Driving takes lots of concentration. Friends say that I am becoming withdrawn.
And then there is constipation.
I'm having a hernia removed next week and I believe it is the right thing to do, I'm a little nervous.
1 - I am much better than I was told I would be or expected in most ways and in a few other unanticipated ways . worse.
2-- Other problems , vision, hearing , old wounds , over weight , heart problems , all stack and compound the PD problem . Attend to every thing
3- Do not slack off ,reduce or modify exercise because it is almost impossible to get it back .
4- You might need to be a tad more tolerant . Endurance becomes more the theme of the day and grumpy-ness can become norm . Pay attention to your inviron and the workload and environment of those around you .
5- stop worrying, stop whining, be happy, you have two choices , live or die
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