Hi ii am 58yrs old and 18yrs into this Parkinson’s experience.
Just wondering if anyone else has or knows of anyone else who’s symptoms come and go in the same day.
An example of a typical day is stiffness of joints/muscles and poor balance for about an hour or so first thing then after a bit of stretching all symptoms disappear and I mean no pain no stiffness normal balance, nobody would ever know i had Parkinson’s.
Then in the evening the symptoms return with a vengeance, very strange.
I thought you either have Parkinson’s or you don’t, how come it completely disappears mid day??
Thank you for reaching out. Our forum members may be able to offer you some direct advice on this, but we would definitely recommend speaking to your GP or healthcare professional regarding your symptoms for a full medical analysis.
You can also pop our helpline a call on 0808 800 0303 and our team are on hand to offer some guidance.
Good morning 555 .. As you say, you may not have Parkinson’s. There are no tests that prove 100% that any of us have Parkinson’s. Diagnosis is down to experience and guesswork.
My first NHS neurologist diagnosed Atypical Parkinson’s after a datscan. A recent private consultation with an expert neurologist produced an opinion that I might not have Parkinson’s and that my datscan was normal.. He sought a second opinion which came back that I had some mild signs of Parkinson’s.
If I do not take my Parkinson’s medication I have falls. So in my mind I am certain I do have Parkinson’s.
Have you had an Mri Spine scan? Might your problem be damage to your Spine?
You do not tell us whether you are on any Parkinson’s medication and whether this makes any difference to you.
Clearly you benefit from exercise. Exercise is very important for those of us with PD.
Hi i have had a brain scan six months into my diagnosis and my consultant said i had Parkinson’s, the symptoms I have also relate to Parkinson’s.
I take Rasagaline and Stalevo daily.
Also when I meditate and get really relaxed I can stop the tremors.
The point i am trying to get across is if most of my brain cells that control movement and coordination have died how can the Parkinson’s symptoms disappear through the day and sometimes with meditation?
Sometimes they(I mean various doctors and physios etc) talk about the plastic brain. When some bits of your brain shut down, other bits can somehow adjust and take over the functions of the bits you have lost. When I was diagnosed I was told most patients don’t get symptoms until they have lost about 80% of the relevant part. I was diagnosed in 2010, don’t know how up to date some of these ideas are.
That’s a really interesting point about the brain’s ability to adapt (“plastic brain”). It gives hope that even with changes, some people might find ways to adjust and cope. I’d love to hear from others: did anyone in this forum feel they improved or stabilized after diagnosis because of therapies, lifestyle changes, or support groups?
Hi, I felt I improved almost immediately from taking my first Ropinerole pill. Before medication I usually started shaking about 20 mins after getting out of bed and would squirm around on the couch trying to find a position that would stop or alleviate the worst of it. Literally within 20 minutes of swallowing Ropinerole it was calming it down, but I did wonder if there was an element of the placebo effect involved. Not that I minded! I was only diagnosed about 6 weeks ago so it’s early days, but I am interested in finding out what exercising and stretching works for people.
My husband was diagnosed 14 yrs ago. Like you in the morning (sometimes falls while getting dressed) then around 11 am getting more steady. And like you tired in the evenings. But not every day….most days. Sinemet has never done much? for him. Still …it could be so much worse.
Hi @Joleyn, it sounds like you’ve both been managing a lot over the years. Hearing how others navigate those ups and downs can really help.
If you ever want to talk through what’s been working or not working for him, the community is always here to listen, and our freephone helpline on 0808 800 0303 is here for you.
We’re sending our best wishes to you and your husband
