I am seeing my Parkinson's Nurse next week. What should I tell him

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1

I am 70 years old & have Atypical Parkinson’s & neuropathy in my legs. I was diagnosed in June 2023 following a positive Datscan. I see my excellent male Parkinson’s nurse once every 6 months. I would say my Parkinson’s condition is stable but slowly declining. I do feel that my life is ok BUT if it did get any worse than it is now my active life would be over.

My interest & only outlet for enjoyment is my indoor bowls which I do for two hours every day. I am in a game of 8 players so I am only bowling for 15 minutes in that
2 hour period. So it is not over tiring. I bowl my 2 bowls then sit down. I would usually bowl a total of 24 bowls in the 2 hour period.

I do get bad days when life is difficult. Maybe 3 or 4 days in a row where I have to just lie on my bed or lie on my settee. After this 3 or 4 days things seem to get back to my normal & life goes on.

I have made some notes for my meeting with my Parkinson’s Nurse … Is there anything else I should mention.

I do not have a neurologist as my NHS one returned to Armenia.

Here are my notes …

VERY PLEASED WITH MY SINEMET. IT HAS ENABLED ME TO PLAY INDOOR BOWLS EVERY DAY.

I FIND THAT IF I HAVE BEEN SITTING IN A CHAIR OR DRIVING MY CAR I FIND MY LEGS ARE UNBEARABLY STIFF *& MY BALANCE IS POOR. IF I STAND STILL WITH MY FEET TOGETHER I TOPPLE BACKWARDS OR FORWARDS.

*ONCE STARTED I CAN WALK 50 YARDS NORMALLY BUT THEN MY LEGS BECOME VERY HEAVY &MY LOWER BACK INCREDIBLY UNCOMFORTABLE.

I CANNOT SLEEP WITHOUT TAKING MY QUETIAPINE PILL. IF I DON’T TAKE A PILL I FEEL UNABLE TO WALK OR BALANCE THE NEXT DAY. THERE DOES SEEM TO BE A DOWNSIDE TO TAKING IT IN HOW TIRED I FEEL THE NEXT MORNING.

I WOULD LIKE TO KNOW WHETHER THINGS WILL GET BETTER FOR ME OR JUST CONTINUE TO DECLINE AS THEY ARE.

EVEN TAKING QUETIAPINE I CAN STILL HAVE UNPLEASANT DREAMS & I STILL ALWAYS DREAM.

AFTER SLEEPING MY BED CLOTHES ARE ALL OVER THE PLACE.

*SPOKE TO NEUROLOGICAL PHARMACIST AT THE CONQUEST HOSPITAL HE SAYS MY BISOPROLOL IS BAD FOR NIGHTMARES. HE SAYS I SHOULD CHANGE.

I ALWAYS FEEL TIRED & HAVE FATIGUE & I DO NOT HAVE THE ENERGY TO EXERCISE.

I GET A LOT OF TROUBLE WITH GAIT FREEZING IF I STAND STILL. HAPPENS EVERY TIME.

Best wishes
Steve2

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Hello Steve2
I think you have written very comprehensive notes which give a very good picture of how you manage. However, you might wish to consider this to cover all bases as it were. My Parkinson’s Nurse always sends me one to complete before I see her. You may choose not to use the form but if you have a look at it there may be some points on it that are appropriate for you to include in your discussion.
Tot

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Thanks Tot … Most helpful.

Best wishes
Steve2

1 Like
4

Your notes for the meeting with your Parkinson’s nurse are comprehensive and reflect your challenges well. It might also be helpful to discuss your fatigue and its impact on your daily activities, as well as any changes in your symptoms since your last visit.

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Hello Khalid & thank you for your advice. Today has been a very bad day. Two
seriously “very real” dreams last night, one involving a car accident. I only had
3 hours sleep & feel shattered today. I have stop taking the Bisoprolol today
as I think it is contributing to my problems. I have requested a GP call back to tell them.

Part of my problem is that I don’t what is causing my walking problems & sleep issues. Is it my medication? Is it Parkinson’s? Is it Neuropathy?

Best wishes
Steve2

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Hi Steve

If you do not have a neurologist, who would prescribe new meds or decide on further diagnostic issues?

Doug

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Hello Doug … My Parkinson’s nurse has & is prescribing my medication. It was him
that put me on Sinemet [Co-careldopa]. My neurologist who has now left the NHS was of the opinion that the Atypical Parkinson’s I have does not respond well to medication & did not initially prescribe any medication for me.

I believe I desperately need to see a good neurologist & I have put together a cunning plan to get one. Through Benenden health.

I am very happy with the Sinemet I am on. BUT I need to get my walking &
sleep / fatigue sorted.

Best wishes
Steve2