I’m introducing myself here as a newly diagnosed woman, 68 years old.
I had symptoms for about 6 months so I was clear that I had PD by the time I saw a consultant but even so experienced it as a shock.
I’m on Semenet 3x daily and Melatonin for insomnia. The symptoms aren’t really improving much, in fact I’m developing a tremor in my right hand now (it was in my left to start with).
I tried going to a local support group but found it a bit like joining an old age group and it didn’t feel right for me. All nice people of course and very friendly.
i’m finding it difficult to adjust to having PD. I feel I’ve gone from being reasonably fit and healthy in 12 months to restricted in my physical abilities, always tired and feeling unwell.
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Hi and welcome to the forum, @polly3. This is a friendly and supportive place and I’m sure the members will be along to welcome you and share their own experiences soon.
How can such a diagnosis be anything but a shock even when expected? I’m sorry to hear you heard it, though. Over time you’ll learn the different ways you can cope with the uncomfortable symptoms and also work with your medical team to adjust your medication times and doses.
I’m sorry to hear that the local group didn’t suit you. Hopefully the forum will be a different or additional experience and one you can count on any time you have concerns.
We also have some useful information for newly diagnosed people here: Newly diagnosed with Parkinson's | Parkinson's UK and our Helpline where our friendly advisers can support you with questions or concerns you may have: 0808 800 0303.
Looking forward to hearing more from you soon
Janice
Forum Moderation Team
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Hello Polly3 … Welcome to my World.
I’m 68 & 24 months old.
I was diagnosed last year.
Yes it was a shock. If I had not had a positive Datscan I’d still be in denial.
I’m also on Sinemet. 2 pills 3 times a day.
I tried Melatonin as I can’t sleep but it didn’t work at all. I’m now on Quetiapine.
I have only a slight tremor if I get anxious. I shake if I carry anything.
I was walking 10 miles a day 6 years ago now I can’t walk 50 yards without having to stop.
Fatigue & tiredness every day.
I also have gait freezing.
Best of luck.
Steve2
Hi Steve 2
I’m on Sinemet with not a great deal of change but its early days I suppose. The Melatonin is helping me to sleep though.
At first I was open to telling people but now I am feeling more reluctant (unless its close friends and family) as people don’t know what to say generally. How did you manage that process if you don’t mind me asking?
Polly3
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Hello polly3 … I’m 70 & single & live alone which I quite like as I can do what I want & no one sees me eat. It takes quite some time as my shaking spills the food off my fork. I have no family to tell.
I did live in Florida for 6 months of the year & play golf but Parkinson’s put paid to that obviously. The Gait Freezing I had meant I had to sit down so I’d be on the putting green have my putt & then have to sit down while others took their turn. I guess this habit was looked on as “quirky”, but this was all before the dreaded diagnosis in June 2023. Quite a relief really as I knew something was wrong with me. Sometimes I would shake so much taking a putt that it might take 4 or 5 attempts to get the ball in the hole. Golfing is now a thing of the past.
For the past year I have been playing Indoor bowls. The second time I played I had a freezing attack & I ended up in hospital for 36 hours. A stroke was suspected but it was just “Parkinson’s”.
At the bowls club there were about 60 members present, of course they all saw my becoming ill & when I returned a few days later they all wanted to know what had happened. I had two choices … make something up OR be honest & say I have Parkinson’s … Best decision I ever made saying I had Parkinson’s … Everyone was very kind & I have worked out how to play bowls without bringing on the freezing attack. Initially I would get these attacks about one day in three & I now knew what it was & would just stop playing & have a cup of tea & watch.
A lot of members have asked me about Parkinson’s & there are a few people that have friends that have it. So no downside to everyone knowing.
In the team games there are 3 players in each team. The second & third player need to be able to stand for a while, which I can’t do, so I play as the first bowler & this works really well.
I was first put on Madopar, then Ropinirole [Parkinson’s drugs]. Neither worked so
I stopped them. Then I was put on Sinemet & I have been able to play bowls every day without having an attack. So that’s good. I have worked out what brings on these attacks & I now know how to avoid the freezing attack happening.
I have never found any downside to people knowing I have Parkinson’s. Although there are a few bowls members who fuss over me a bit. I do sense people watching me as I can be a bit wobbly.
Hope that wasn’t too long & boring, but you did ask. If you have any questions ask away.
You do sort of get used to Parkinson’s & all its quirks.
Best wishes
Steve2
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