Parkinson, parkinsonism or misdiagnosed. To start Parkinson medication or not

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I am 71 & was diagnosed with Atypical Parkinson’s in June 2023 following a positive datscan. I started taking Co-careldopa [Sinemet] about a year ago. I am certain Sinemet has made a positive difference to my gait freezing which was my main issue 18 months. How troubled was I by my gait freezing 18 months ago? I’ll give it a 9/10 score. How troubled am I by my gait freezing now? I’ll give it a 7/10 on the whole but I do get the odd bad day rating a 10/10.

I would love to know whether I was right to start taking my Parkinson medication in particular. The fatigue & tiredness that goes with it can be unbearable. Oh for hindsight.

I have always had my doubts whether I had Parkinson’s I suppose I must have.

My new GP has said she is unsure whether I have Parkinson’s or Parkinsonism.

Also every new symptom that pops up it is always more pills rather than what pills
I might stop.

Ho hum.

Best wishes
Steve2

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Hi Steve,
I understand what you mean.
It’s such a difficult condition to know for sure how you were before vs now and how well the meds work or not.
For example I find I feel physically and mentally better after exercising over how the medication makes me feel.
Guess the only way to know what impact meds have would be to reduce / stop them which the nuro would need agree with. I have seen that people that do DBS go through a phase off medication to see how they are off medication.
Thanks

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Steve2

My thoughts on this are that both you and the consultants are still learning about this condition, as is all of us. I wonder how much of your suffering is because of PD or as a result of side effects from the meds? I’m sorry your in this situation x

H

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