Good days & Bad days with Parkinson's

I am 69 & have Atypical Parkinson’s, confirmed by a DATscan of my brain. As far as symptoms go I am very fortunate. If I am sitting or lying down I feel very well & there are no signs that I have Parkinson’s. Last week I had one of my best days. I went for a short walk & felt I could have run.

I had to give up golf, made possible by riding a golf buggy. So I took up indoor bowls
about 6 weeks ago. I am quite good & play 4-6 days a week for 2 hours. Most of the other bowlers are in their 70’s, 80’s or older. I play in a group of 8, so 2 hours =
120 minutes / 8 players = 15 minutes activity bowling a ball around 40 yards. Take off 20 minutes for coffee half way through … clearly this isn’t energetic. Aged 69 I am the group’s youth policy.

I’d only been playing for 10 minutes on Wednesday. My legs became rigid & stiff & standing on the bowling mat I started to shake & couldn’t move my feet. My left leg felt numb from the groin down.

So I had to stop & sat down for a bit. I felt complete exhaustion & my body felt weird.
I didn’t feel dizzy. Can’t describe the feeling. I sat down & the other wrinklies were concerned. So I sat for a while & when the others were distracted I made my way to my car with a lot of difficulty. I drove home. Then went online searching 111 …
I answered the questions & it said ring for an ambulance, which I did. I told them I did not want to go to hospital but they wanted to send me an ambulance to assess me. So the ambulance arrived & we had a chat. I still did not want to go to hospital but if two pretty ladies ask you to get into a vehicle with them what can you do?

So off I went. Straight into A&E & lots of tests. All were fine, but I still could not walk & was overbalancing when I stood. So I was kept in overnight & discharged myself the next evening as nothing was going to happen was it. They said what I had
was a Parkinson’s issue. There was a Neurologist & he was spoken to but he didn’t see me.

Today is the day after & 11 hours sleep last night. Still feel pretty bad today, but better than I did yesterday. I had to cancel bowls for the next 3 days.

I am on no Parkinson’s medication. Just Amitriptyline & felodipine for blood pressure.
They have changed my BP pill.

Anyone experienced anything like the above?

Best wishes

I am surprised that you haven’t been prescribed medication for Parkinson’s. Amitriptyline is really used for depression and to help your sleep. You should talk to your doctor. Yes it maybe your blood pressure tablets but many people with Parkinson’s have those symptoms as their dopamine levels are depleted and need proper medication for it.

Hello sally1 … When I was diagnosed with Parkinson’s following a positive DATscan the Neurologist said I had Atypical Parkinson’s. He told me that this form of Parkinson’s does not react well to medication. He said there was no point in my taking anything but he would prescribe medication if I wished. So I phoned this charity & they said I should take medication. So I got back to him & he prescribed Madopar which
I took for 7 days before I stopped having had a bad reaction. I was then put on Ropinirole for 10 days before he advised that I stopped as I was not noticing any benefit other than a slight headache.

Best wishes