Hi, my first time on the forum and just introducing myself. I’m 63 and was diagnosed a year ago. I went to my GP because a couple of people had commented that I was dragging my right foot. He sent me for a brain scan (this did show a slight oddity though it turned out not to be sigificant). I was then able to see a neurologist privately and she confirmed Parkinson’s. I say ‘confirmed’ because my wife did a lot of reading up on it and we could see that I’d actually had symptoms probably going back 5 years or so - not swinging my arm, not feeling quite in control of my legs and tiny writing being the most obvious. So it didn’t come as a great shock. I’m now on Co-careldopa and half Sinemet. A year on I have just had my first NHS appointment with a neurologist and hope to have contact with a Parkinson’s nurse - I hear very positive things about the nurses. I’m not too badly affected at the moment. I walk with a limp but I can still cycle and the medication has improved my handwriting. I work part-time. To be honest I sometimes feel a bit of fraud at the moment but I do worry a bit about how it will progress.
Welcome to our community forum. You’re sure to hear from our members soon, but in the meantime we wanted to be sure you’re aware of the resources available here. In addition to our website, Parkinsons.org.uk, which can be searched for loads of helpful data, including archived forum discussions, we have a free and confidential helpline staffed with friendly, knowledgable advisers that you can reach on 0808 800 0303. Please don’t hesitate to reach out to them for anything. They’re truly happy to help.
With our warmest welcome and best wishes,
Hi Steve60 … I think all of us have different Parkinson’s experiences. You are certainly not a “fraud” but maybe like me you consider your symptoms quite mild. I would suggest getting a DATscan to prove your Parkinson’s. I’m sure your NHS Neurologist will suggest one. Yes the Parkinson’s nurses are good as are the ones here at Parkinson’s UK.
My Parkinson’s symptoms’ are mild but I do think mine are getting worse. My challenge is working out what is causing my new symptoms that slowly crop up as
I get a little older, I am 69. Walking & fatigue are my issues. A lot of my medication causes fatigue so is the fatigue I have a Parkinson’s symptom or is it my medication?
Is my poor walking down to the Parkinson’s I have or the Peripheral Neuropathy I have.
Add to that my New Atrial Fibrillation now countered by new medication that also causes fatigue.
Everything happens very slowly with Parkinson’s. Be sure to book a follow-up appointments when you see your NHS Neurologist. New appointments can take a long time to arrange.
Best of luck.
My name is Steve and I am 58 years old, working in retail for Tesco. I never had kids and live at home which is kind of the way I like it because I only fully relax in my own space. I have a history of anxiety and depression issues, but have noticed these becoming worse in recent years, and also began to notice tremors in my hands, firstly my left hand then both. I had a brain scan earlier this year which confirmed the consultants suspicions that I have PD. My left hand movements are slightly impaired but otherwise I am still physically able to do everything normally. The main adverse impacts appear to have been on my mental health thus far, mostly because I already had a pre-existing anxiety disorder.
My workplace has been very understanding and supportive, but aware that the years I am living right now are the best ones I have left, I have decided to cut my hours and get help from Universal Credit. I used to work all the hours I could get which was also not helping my mental health but now I aim to try and get by on about 25 hours a week.
My Parkinsons is now being addressed with medication as is my anxiety, the latter by dosage increases. The med for Parkinsons I have been given is Levodopa. For a time this seemed to cause serious mood swings and also increased levels of sexual interest, like being 18 again. But thankfully both these side affects have subsided again.
Well thats my story, apologies in advance for my tendency to be overly verbose. I am more used to politics forums, lol. And there you never use two words when ten will do.
Hi @srb7677 and welcome to the forum. We seem to be gathering Steves here Not to worry about how many words you want to write. We love reading every one so keep them coming!
It sounds like you have a lot to think about and I hope over time that you find ways to make things work as well as possible. It can take some adjusting and revisiting as needed. Anxiety is very hard to live with and I hope that you can look at this more closely and find new ways to cope. You’ll certainly find many allies here on that score, everyone is very supportive.
We have some good resources on our site. You can start here; Anxiety | Parkinson's UK but also do a search for Anxiety in the top right of the website to find more.
Forum Moderation Team
Hi, believe it or not here’s another Steve.
I’m 70years old and sort of diagnosed (neurologist comment “good news it’s not a brain tumour”) about 6 months ago.
About 2 weeks ago diagnoses was Parkinsonism and Sinemet Plus prescribed.
I’ve had a DatScan that states results are consistent with Parkinsons.
My physical symptoms are cold left hand, tremors in left arm on waking,
and a left leg with a mind of it’s own.
(tremors seem to have eased since Sinemet.)
I’m in week 10 of a 10 week online exercise course called Reach Your Peak that cost
£170 and seems to have helped.
The only anxiety I have is whether I should suggest we start a Shakin’ Stevens club
Afternoon Stevet … What a great idea, a “Shakin’ Stevens club”. Although I do have Parkinson’s I don’t shake much. But I do have a dodgy left leg. For exercise I have joined an indoor Bowls club as I had to give up golf. I thoroughly enjoy Bowls & play
4 days a week. 2 hours a day playing, much of which is spent sitting down waiting for my turn to bowl. It costs £4 a day x 4 days a week = £16, which is £1 cheaper than what you pay for your online exercise. Do I win?
Thanks for response
Is that outdoors?
Some golfing friends of mine have been rained off for ages
so bowls might be good for them.
All the best
Hello Stevet … The “Indoor Bowls Club” I joined does play indoors not outdoors. The Outdoor season is around April 1st to October 1st. Most keen bowlers play indoors during the Winter. My old golf club has been closed for 25 days due to the rain.
Hello, I have just joined this forum because I believe my husband has Parkinson’s disease but refuses to see anyone about it. I’m feeling very frustrated especially as I am a retired nurse with knowledge of PD’s likely progression. He sings in a choir and for the first time last Saturday the way he was slumped in his chair (admittedly a very uncomfortable and badly designed one) he looked as though he had had a stroke - leaning to the right side, right side of his mouth drooping and a bit boggle eyed and a scared, fixed facial expression. I managed to catch his eye and he smiled so I didn’t make a fool of myself going to physically shake him which I was on the verge of doing. I need to to persuade him to see the GP and plan to go on the attack a bit by reminding him of certain things such as- he looks increasingly miserable (though he isn’t and blames me for taking poor photos), he takes shorter steps, walks slower, shuffles at times and also stoops at times. His sleep/wake pattern is getting more random etc but I’m really hoping that when I tell him his voice is likely to get softer and softer that will be a sufficient concern to get him to be seen. I haven’ listed all his symptoms which with hindsight I think have been developing for the last 8+ years. I feel really inadequate and I would appreciate any advice anyone has who may have dealt with a stubborn person (that is my nice word!) like him. He says he doesn’t want chemicals as medications cause side effects so what’s the point. Sorry, people, to have rambled on. If you have got this far, thank you so much and I am sending my good wishes to you all.
Hello and welcome to our forum, @PinkLizzie. I really can’t imagine how worrying and frustrating this is for you. What a challenge! However, you’ve come to the right place. Everyone is supportive and friendly and will have something to share with you.
The first step, of course, is to get a diagnosis. Admittedly, this won’t be easy but if your husband is reluctant to go to the doctor why not ask for an appointment yourself to talk about this? Your doctor may have experience with stubborn patients and know the best route to take. I’d also encourage you to call our helpline for some advice on 0808 800 0303.
While you already have a good knowledge of Parkinson’s, it may help to take a look at this information on our website: Do I have Parkinson's? and do some more exploring to see what might be useful information.
Do take care and keep us informed on what comes next.
Forum Moderation Team
Hello PinkLizzie … Difficult one this. The first thing that comes into my head is to suggest that you respect his wishes & stop badgering him. It seems, from your post that it is you that wants to know whether your husband has Parkinson’s & not him. When or if his symptoms get worse then no doubt he will want to get something done. Clearly there is something wrong with him but he does not want to know. Having Parkinson’s myself I can understand. Knowing that I have Parkinson’s hasn’t help me get better & both the Parkinson’s drugs I have tried have made no difference. There is an argument that I would be better off not knowing that I have Parkinson’s.
No doubt you are aware that Parkinson’s cannot be “cured” & that all our medical team do is try & treat our symptoms with drugs. Of course the side effects can be worse than the benefits from the medication. If your husband’s symptoms aren’t bothering him & he isn’t ready to start taking medication then that is his choice I guess.
Hope the above helps, probably not.
Best of luck