Introducing myself

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.

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Hi Steve60,
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,, 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,
Forum Moderator

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 :grinning: 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.

Best wishes
Forum Moderation Team

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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
Best regards

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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?

Best wishes

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Hi Steve
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
Steve t

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.
Best wishes

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

Hi Pink Lizzie.

Some men are their own worst enemies when it comes to going to the docs. They will often go into denial and refuse to acknowledge even to themselves that there is anything wrong. In my case as a male I was aware of tremors but dismissed them as a symptom of anxiety. But because I come into contact with medics for other reasons associated with anxiety and diabetes, my tremors were noticed by a GP and I was referred to a consultant. It was nearly a year before I saw one though.

The important thing to understand is that your husband if in denial is unlikely to seek out medical investigation for his own good. He may already have convinced himself that there is nothing wrong, and if he has any doubts he is in denial about them. So trying to persuade him on the basis that there might be a problem that needs looking at might be a struggle. But he no doubt cares about you and other loved ones in his life, eg possibly sons and/or daughters, and will probably be concerned about your feelings. In fact this is quite likely.

So the key to getting him to seek out a diagnosis, is to make him want to do it for you and anyone else he cares about. If you all stress to him how worried you are, he might seek out a diagnosis just to put your minds at rest. He may well have already convinced himself that there is no problem so feels no need to put his own mind at rest. But he will care about the feelings of his loved ones and might agree to getting it checked out for you if not himself.

I suppose in essence you might need to guilt trip him into seeking out a consultation stressing how worried you all are, and that if there is nothing to worry about you will all be very happy to have that confirmed. He can deny reality to himself but if he is a good and loving man your feelings will probably matter a lot to him

Hello Pink Lizzie
I read your post and the replies you have received with interest. I can understand your frustration especially given your background but I also think there is a lot of truth in the replies you have received.

You must obviously do what you think best but my instinct from what you’ve written would not be to as you put it, go on the attack by reminding him of certain things. I can entirely understand your saying he needs to see his GP and clearly he does but whatever is happening, and it might not be Parkinson’s, is happening to him not you.
It strikes me your husband may not be as blinkered or as unknowing as he may appear; there could be any number of reasons why he is reticent to do anything even if in his heart of hearts he knows something is up - and that might be he is just plain scared or knowing that as soon as he does something about it he will have let the genie out of the bottle and it can’t be put back

As you will know with hindsight most people with Parkinson’s recognise that they have had symptoms for some time before the formal diagnosis. These early signs are often explained away by perfectly reasonable explanations it is only later that it begins to dawn on the individual that there could be more to it. and it is potentially something quite seriouss. Most people will go through this type of thinking before deciding to do something about it, It can be a difficult and scary time. Your husband could still be at the stage of one day thinking the worst and the next telling himself it’s in his imagination because when the symptoms are relatively mild it can be hard to be sure.

The other thing I find myself wondering is if his reaction to anything you might say iis different to what you would normally expect If it is he could be trying to cope with unfamiliar emotions and not understand how to cope with these - to use a sterotype he may feel he is no longer the strong male he always saw himself as for example.

Maybe taking a step back and trying to imagine how things may seem to him will help you come up with a more effective way to support and help your husband than going on the attack. I don’t say that to be critical after all, I don’t know eithrer of you the sort of people you are or the nature of your relationship. I only suggest there may be another perhaps more low key approach that may be more productive in getting your husband to see his GP. In the end though it can only happen if and when it is the right thing for him,

Hi My name is John I am 75 and am single no kids that I am aware of.
I used to walk a fair amount and at a fair pace. My friends commented on the fact that I was slowing down. I just thought old age. Jan of 2022 i had an attack of sciatica which was so painful that that I needed a lot of support.
After 3 months I was able to walk again not as fast I used to. My Dr. noticed my hands shaking and my right foot dragging, and very amusing to me my left foot often felt glued to the ground partilcularly when turning around.
I lived in a very hilly part of Manchester and began to find it difficult walking down hill as I kept running in short steps. A sight for sore eyes.
My handwriting was becoming awful and shaky now very tiny. A neurolgist saw me in May and said it looks like PD. He did some simple tests then made a follow up appt for November where he confirmed PD and put me on Madopar and rasagiline.
They appear to reduce the shakes and help me walk but I am only on week 7.

My neurolgist said I will die with PD but not from it. This cheered me up as I gave a lot of my savings to family to help them with their houses. House inflation put me in IHT bracket and I have to live till 80 so that gifts won’t be taxed.

Well that’s it in a nutshell

Hi John,

I love the phrase " that I am aware of"… I kind of feel that if you have had no maintenance claims you definitely have no kids.
Kids are not shy about that.
At least you have the same attitude as I.
As we can do bugger all about it, laughing is just so much easier than crying.
I don’t totally agree with his statement " you will die with it but not from it."
A lot of the symptoms can definitely be life threatening, as you will see on the forum, however luckily(?) you are 75 so the chances of your having it hit you really badly before you are 80 is hopefully remote.
As I have told my children, being of sound mind and body, ok I lied, I spent all my money on beer, wine, whiskey, women and song (ok I lied here as well, my tune sense is more than somewhat lacking ).
In any event I am taking it with me in travelers’ cheques.
Apparently, all the banks are down there, so I might actually be able to use them.

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