Atypical Parkinsons

About Parkinson's and health Wellbeing
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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

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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

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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?

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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

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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

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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

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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 …

  1. Do I feel the way I feel because of Parkinson’s?
  2. Do I feel the way I feel because of the medication I now take?
  3. Do I feel the way I feel because I am tired and fatigued?
  4. Do I feel tired & fatigued because of the medication I take?
  5. Do I feel the way I feel because of an undiagnosed condition?
  6. Do I feel the way I feel due to a combination of the above factors?

Best of luck with your new meds.

Best wishes
Steve2

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This combo is designed to keep dopamine working longer. Wishing you steady improvements with the new adjustment

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Hi. Just to let you know that there are different forms of Atypical Parkinson’s. This link tells you more: Atypical Parkinsonism | Baylor Medicine