My name is John. I’m 70 years old and was diagnosed with Parkinson’s earlier this month - on my 47th wedding anniversary, in fact. Not the best anniversary present I’ve ever had, but hey-ho.
I first noticed a tremor in my left hand about a year ago. I was filling a glass with water, and my hand began shaking so badly I almost dropped the glass.
Took me a while to get a diagnosis (poor old NHS) but after a CT scan, followed by an MRI scan, I finally got to see a consultant who sent me for a DAT scan. The DAT scan confirmed his suspicions and he told me I have the condition and prescribed Madopar 50mg/12.5mg Levodopa+Benserazide.
At the moment my symptoms are mild. The fingers of my left hand sometimes twitch and my right hand has recently started to join in the fun, but not quite so enthusiastically. I’ve been a guitarist for the past 60 years, so the finger-twitching is a tad unwelcome, as is the insomnia.
I look forward to learning more about what lies ahead from members who have gone before me.
Oh, one positive thing that intrigues me. I lost my senses of smell and taste decades ago - sometime in my 30s I think - but in the past day or two I’ve noticed changes. I ate a strawberry this morning and I could actually taste it! Not the full taste I remember, but a definite hint of strawberry.
Same with my sense of smell. Flowers in the garden that I haven’t been able to smell in years have started tempting me with a slight perfume.
Could that be due to the medication, I wonder?
Anyway. I’m glad to be here and I look forward to meeting some of you.
Good evening JohnMR … We have somethings in common as I am 70 & also had a positive Datscan. I am on Co-Careldopa aka Sinemet. I take 6 pills a day. I too have a slight tremor.
Taking Sinemet I found that I dreamed in brilliant colours. One dream had me in a Sushi restaurant eating a bright royal blue fish. I can’t remember what it tasted of … probably my pillow.
I have also been having nightmares but I have started taking Quetiapine & the nightmares have stopped, although I still dream. A couple of weeks ago I did score two goals for a premier league football team. Not bad for a 70 year old who hasn’t played serious football for 50 years.
Good morning JohnMR … I have been a keen serious sportsman all my life. Indeed I played [field] hockey in my early 60’s for the Welsh Over 60’s team in the European Championships. Then I took golf up seriously & would play 5 times a week, walking the golf course with my clubs over my shoulders. Then I started conking out at the 14th hole. I was soaked in sweat & my body weighed a ton [I am slim]. So off to hospital I went & my blood pressure was very high. So BP pills.
I stopped walking the course & rented an electric golf cart I could ride on with my clubs on the back. Then number of times I could play golf dropped from 5 times a week to 3 times a week & never 2 days running.
The next thing to go was my putting. I started shaking when I stood over a putt. On one hole it took me 15 putts to get the ball in the hole. Then the freezing started, I would be standing over the ball & could not move my arms.
In June 2023 I had my positive Datscan & a diagnosis of Atypical Parkinson’s. My Neurologist said Atypical Parkinson’s did not react well to Parkinson’s medication & he was not going to prescribe medication unless I wanted him to. I also spoke to my Parkinson’s nurse who said I should be on medication as it slows down the Parkinson’s process. So I tried Madopar & Ropinirole which did no good so I stopped them.
So in September 2023 I gave up playing golf & started playing indoor bowls. You are in a group of 8 people, you bowls two bowls & then sit down for 10 minutes & then you walk 50 yards to the end of the bowling rink.
One day I froze on the bowling matt & could not move my feet & had to stop playing & an ambulance was called. I was banged up for 24 hours. I was unable to walk properly for a few days. I then found I had to limit the number of days I play a week with not playing two days in a row.
I could not do anything where I stood still for more than a couple of minutes. Simple things like standing at a Supermarket check out are impossible. I can’t wait to cross the road.
I spoke to my Parkinson’s Nurse who prescribed Sinemet & my reaction to this has been good & I am back to playing bowls every day BUT I still can’t stand still for more than a couple of minutes. This is called GAIT FREEZING & is a symptom of Parkinson’s.
I can walk a short distance normally. 50 yards is no big deal.
So in answer to your question Yes, I have noticed changes in my symptoms, hopefully explained above.
Thanks for such a full response, Steve. I’m sorry you’re so badly affected.
I’ve never been at all sporty, so the only changes I’m aware of are more to do with everyday movements, guitar-playing etc. and at the moment they’re very mild. What’s more, the Madopar I’ve been taking seems to be working already, even though I’ve only been on it for two weeks. Early days, but a good sign.
If anyone else is reading this, I’d appreciate some input on how Madopar has worked (or not worked) for you.
Also my sense of smell returning. Does that ring a bell for anyone else?
I’m a bit younger than you, and diagnosed last September. I started on 50/12.5mg of Madopar, increased to 100/25mg after three weeks and noticed an (almost) immediate improvement. I can’t comment about the sense of smell returning - but I have also had a very poor sense of smell for many years. I have, however, noticed that my singing voice (which I had lost - thought it was due to Covid) has started to return.
Excellent news about the singing! Singing is good for you. Something I forgot to mention - actually it’s only just occurred to me. I sang for decades in pubs and clubs, but a few years ago I noticed my voice just vanished in certain sections of my range. Only air came out instead of a note.
I wonder now if that’s also a Parkinson’s symptom.
May I ask what symptoms you had at the point of diagnosis?
Hello again JohnMR … Sorry I did go on a bit didn’t I ? If I can play bowls every day then I am happy enough with life. I get to see people & I am quite good. In fact after only playing bowls 9 months I am better than I was playing golf at my peak. But if I lost the ability to play bowls then life is over for me. Life would be no fun. I play in leagues & I can compete, you would not know that I have Parkinson’s watching me play.
There is a golfer I used to play golf with. Within seconds of meeting him you would know he has Parkinson’. He has the shakes & the shuffling walk & he speaks softly.
Me, I can stride out, I talk normally & I only have a slight tremor. Now David walks the golf course 3 times a week. I doubt I could walk for 1 hole.
So, in summary, we are all different in how Parkinson’s affects us.
I think the singing might be related to Parkinson’s (rather than Covid in my case) as it has started to improve since starting on Madopar. I had totally lost my singing voice and now have the middle part of my range back fully, the top and bottom of range are OK at full volume, but I can’t use them quietly (if that makes sense).
My diagnosis actually followed a somewhat unusual route. I have hypothyroidism and my thyroid blood tests came back as abnormal (unreadably low TSH) - because I had (intentionally) lost a lot of weight, so my thyroxine was over-replacing giving me the appearance of hyperthyroidism. I had a consultation with the pharmacist attached to my GP surgery who asked about various symptoms, including tremor - which I had noticed, and which can be a result of an over-active thyroid. My thyroxine was reduced, but as the tremor did not improve (and in fact got worse) I was referred to Neurology. At that point I had also noticed that my handwriting had deteriorated and that my left leg sometimes seemed to ‘drag’ when I walked. Since starting on the medication for Parkinson’s not only has my tremor reduced and my walking improved, but also (as mentioned) my singing voice has started to return and I am just generally more active and mobile.
Yes, my journey to diagnosis was unusual - but also relatively quick. It’s still early days for me (not quite 10 months since diagnosis, and only 14/15 months since the first steps on the journey). Glad to hear that things are working for you - long may it continue.
Welcome to our forum JohnMR I am interested knowing about losing your taste I lost my when Covid started i can recall textures of things but no taste opps apart from G/T but its only the fizzy bit. I still have my sense of smell. I now have had PD since 2010 and it is only in the last couple of years it has decided to let me know who is boss, I used to do line dancing, green bowling in summer, indoors in winter, (went to Potters last year picked up a bowl and went halfway down the rink with the bowl) say no more? I also did Tai Chi for 14 years but then balance stopped me, Elaine the tutor said she would show me some moves sitting down, but if I could not do Tai Chi standing then I did not want to know. This was over a year ago but a couple of weeks ago I went to one of Elaine’s classes and it made my day. I think when you ask about PD all I can say is that we are all different some people accept things some let things take them over, is it up to you. old song can you remember about that little ant who wanted to climb the rubber tree plant? thats how you have to be Never Ever give up. Medication I am on Madopar and Ropinirol I have taken it from the start so you see not everything suites everyone. we just have to hold our heads up and try to cope best way we can.
Hi, Mary.
Thanks for the welcome.
Yes, the taste/smell thing is intriguing. As I said, I lost mine decades ago, and I don’t know if that was in any way linked to Parkinson’s - perhaps the first sign that something was wrong - but the fact that I’m getting those senses back since I started taking Madopar is fascinating. Very welcome, too.
So far I’ve had no unpleasant side effects from the medication.
It’s great to hear that your Parkinson’s gave you so many years of relative peace before it began to show you who was boss. I hope the same is true in my case, but as you say, we’re all different.
Whatever happens, I shall try to be like the ant trying to move the rubber-tree plant. High Hopes, if memory serves.
All the best - John.
