Diagnosed with PD in July 2024, the meds never really helped me, so the consultant is now saying I have Atypical Parkinsons - Im not sure where this leaves me, I’m struggling to keep my balance so walking is a real challenge.
Has anyone else been told they have atypical and if so how do you cope?
thank you
Hello Punky … I am 71 years old, I was diagnosed with Atypical Parkinson’s following a datscan that was positive for Parkinson’s in June 2023. My neurologist told me that Parkinsons drugs rarely work for Atypical patients. Did I want to bother … I decided to try … firstly Madopar, then another drug, neither worked. Then he left the NHS & my Parkinson’s nurse put me on Sinemet, which worked & improved my symptoms…
I have mobility, gait freezing & balance issues. As I say noticeably better but not cured.
I also have Spinal Stenosis, Arthritis, A Fib & a few other issues. I take a lot of medication.
I must also mention that I do get side effects from taking Sinemet. Quite bad sleep issues which means more medications to treat these issues.
Three years ago I could walk ten miles a day, now I struggle to walk 80 yards & have to use a walking stick.
Whether this is the progression of the disease or the medication I take I do not know.
Any questions do ask.
Best wishes
Steve2
Thanks for replying Steve, I’m sorry to hear of all your health issues: that is a lot for you to deal with!
I’m taking Co- careldopa which I believe is the same as simelet?
I just want to be able to walk, I use a stick or Nordic poles. I only go out in the car and rarely alone.
I just turned 60 and know I’m going to struggle with this
What help does your meds give you?
Hello again … Yes, Co-careldoa is also known as Sinemet. Sinemet is easier to spell.
I had to give up golf 18 months ago because of this disease, also I could only play once or twice a week due to exhaustion. So I took up Indoor Bowls. Again I could only only play now & again & once had a bad attack of gait freezing & ended up going to hospital for 24 hours. Then I started taking Co-careldopa & found I could play every day, although this week I am struggling to play. So, yes, I do feel it helps me. But we are all different aren’t we.
Any more questions do ask. Also thanks for your concern in my condition.
Best wishes
Steve2
Atypical Parkinson’s …
Sinemet / co-careldopa 12.5mg /50mg 2 pills x 3 times a day
Rasagiline 1 pill x 1mg a day
I have just been put on Rasagiline which helps Sinemet be more effective.
Steve2
Thanks for that info Steve, I’ve just rung my Parkinsons nurse and asked for my meds to be changed.
How are you feeling today? It’s hard to know at times whether an off day is down to PD or just general wear and tear.
Best wishes to you
Afternoon Punky … I played Indoor bowls earlier today having not played since Saturday. I feel more normal today, but still very tired & had bad dreams last night.
The questions I have are …
Best of luck with your new meds.
Best wishes
Steve2
This combo is designed to keep dopamine working longer. Wishing you steady improvements with the new adjustment
Hi. Just to let you know that there are different forms of Atypical Parkinson’s. This link tells you more: Atypical Parkinsonism | Baylor Medicine
HI Steve, can I ask how you were diagnosed with atypical PD?
Good evening Punky … When I moved to the area where I now live 5 years ago I had an introductory consultation with the head doctor at my local GP’s. He asked me how long have I had Parkinson’s. I of course said I didn’t have Parkinson’s.
I also had spinal problems which I have just found out is Spinal Stenosis. So the NHS referral letters were sent out but got lost in the system.
Nearly 4 years later I get an appointment letter to see a locum neurologist. He apologized for the delay in seeing me. He quickly arranged for a
Brain Mri scan which was normal, Spine Mri scan which showed 3 areas that had age related damage & a Brain Datscan which was positive for Parkinsonism.
When he had the results I was examined by the neurologist & got a letter confirming “Atypical Parkinson’s [Parkinson’s Plus]” … He said as This form of Parkinson’s does not respond well to medication he asked whether I wanted to bother. Then he left & my Parkinson’s Nurse prescribed Co-careldopa [Sinemet] which has helped.
I clearly have a neurological condition as I now have severe “gait freezing” & an internal tremor. Also a few other symptoms that might be Parkinson’s or something else.
Do you have any questions?
Best wishes
Steve2
Thank you Steve, I just wondered how they came at the atypical Parkinson diagnosis… The last consultant I saw after a ten minute appt said the same to me purely based on me saying the meds are not working. I spoke to a parkinson nurse at parkinson UK and she said my dose is very low and unlikely to be of any benefit. She suggested I get in touch with the hospital and implore them to increase this… I have wrote another email to the consultants secretary practically begging for help.
How are you feeling today?
Hello Punky … A Parkinson’s diagnosis is IMHO an educated opinion OR guesswork.
The datscan I had very clearly shows Parkinsonism says my [Good] Parkinson’s Nurse.
I did try Madopar for 7 days & got a headache of sorts so stopped & tried another drug which did nothing for me so stopped that one after 10 days. The Sinemet I have been on for about 9 months does make a difference.
I play indoor bowls & an Saturday I had at least 6 falls & was forced to stop playing by our captain quoting health & safety regulations. So two quiet days & I am going to try & play in a match this afternoon.
I don’t really know how I will be until I play. I haven’t felt ill just can’t move my feet, then lose my balance. Not pleasant !!!
You might ask to try Sinemet OR maybe if your Parkinson’s symptoms aren’t bothering you stay medication free for the time being. I do wonder if I should have taken this option. Obviously I’m not a doctor etc …
I think I’ve had Parkinson’s for close on 10 years looking back but only diagnosed in
June 2023.
Best wishes
Steve2
How’s your blood pressure Steve? I wonder if the bending down to play bowls is making you lose balance…?
Is there any other way you can participate with indoor bowls without actually playing and hurting yourself?
I look for activities on zoom, its a safe way of taking part and you can talk to people in the “breakout” rooms.
My symptoms do bother me a lot, I can barely walk ar times.
Good afternoon Punky … I do take Ramipril for high blood pressure. My blood pressure is mostly ok … I do have a BP monitor. Currently 122/90. I do find my BP can vary wildly during one single day.
I also have A fib controlled by a Beta Blocker & a blood thinner.
Before I went onto Sinemet about 9 months I had a bad gait freezing attack. I did try bowling in a wheelchair. All indoor bowls club have special wheelchairs. I did not bowl well & do not consider it a viable option.
I did play bowls on Tuesday & had no problems. Saturday was just a bad day with
6 falls it is my record.
No, bending down is not a problem for me bowling it is 100% not being able to move my feet, the gait freezing I get with Parkinson’s. Also with this my legs become rigid & my knees seem to lock.
Also how tired I am is a factor hence my seeing a consultant re this issue next Thursday
through Benenden Health.
Why are you unable to move …
Best wishes
Steve2
I cannot walk properly because I shuffle and lose my balance