Hi

Hi, I am new to this forum, but was diagnosed 18 months ago. I am 60 years old, still working and driving. However I find myself struggling to adapt sometimes. Until recently I played in a band, travelling around gigging and rehearsing, but have had to put that on hold due to anxiety and not trusting myself, not to let the other members down. I find that increasingly I have bad days when I find it almost impossible to perform the most basic tasks (eg, making decisions and typing). I am lucky that I have very understanding employers, who let me work from home if I need to. But I don’t want to abuse their goodwill. But above all I’m blessed to have a loving, caring and understanding wife.
One thing that I’ve noticed from this forum is that many of us are frustrated by the fact that some of the most debilitating symptoms are the unseen, sometimes difficult to explain ones.
Anyway, I look forward to sharing thoughts and experiences and not feeling alone in coming to terms with this condition, I’d rather not call it a disease.
By the way, I think humour is the best tonic so I call “it” Michael, I know, not very imaginative :smile:
Johnny

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Welcome to the Forum Johnny. I’ve always said to members not to take,“Michael,” too seriously, have fun with it and let people know that they don’t need to pussyfoot around you. If you can laugh at yourself it is half the battle, being positive in your attitude helps as well, just be the best you can every day. As others(Moderators included) will tell you, no two people have the same conditions/side affects, we are all different and cope in different ways. One thing is for sure, on here you’re never alone, there is always someone about to help with anything you may wish to ask. Hope you find the Forum useful and informative.

Les

Thanks Les, I firmly believe, it’s living with…not suffering from.

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Hi Johnny,

I am also new to PD. Like you I am 60, still working and have an amazing Husband and supportive children.
I constantly struggle with Anxiety, it caused me to get off a plane before take off! I decided that day enough was enough and it was not going to take control. Most days this works, I made it to America this August.
On really bad days I get out of the house and go for a walk, the gym also helps.
I decided not to take medication, I have a tremor in my jaw, right hand and right foot. Thankfully I am left handed. I believe peoples perceptions of me are their problem not mine, I am not going to take tablets to hide my tremor.
I take each day as it comes and am still working at listening to my body.
Don’t give up your music, go back when you are ready.
As I say to the children at school, Baby steps.
I have called mine ‘Shaking Stevens’ and have decided to wear my pants on the outside. Even PD can’t hold down a Super Hero!
Take care and remember you are not alone.
Annie;)

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Hi Annie,
I like your attitude to not let this little inconvenience win. Well done for getting over to America.
It’s interesting that you decline medication. I had the same attitude, but changed my mind when my consultant convinced me that it was worth a try, so he put me on co- careldopa. However I don’t think that it has made any difference, I’m taking stuff for the anxiety as well and that does seem to work. But I am seriously thinking of going back to being my old drug averse self and see what happens. But I’m seeing him in a couple of weeks and he’ll probably convince me otherwise.
But as you say, “take each day as it comes and listen to your body”. I should make the effort to get back into yoga.
Keep on being you. all the best.
Johnny :slight_smile:

Hi Johnny,

Go to your appointment with ‘your pants on the outside’ attitude!
My Consultant offered me Sinemet and I am sure he will not be amused to hear I am not taking it. I theorize that he has been monitoring me for two years with no medication, as soon as I was given the diagnoses drugs were offered. Why? They have little effect on tremors and I fortunately do not have stiffness yet.
Do you have a PD nurse? Mine was amazing and respected my decision. They are the font of all knowledge!
Let me know how your appointment goes.

Take care
Annie:)

Hello JD. Having a positive attitude will go a long way if you let it. Another bonus is a good wife as you describe her. Being financially solvent and not needing or wanting employment also helps your wellbeing. When I look over the years 2008 (65 years) to 2018 it was like a walk in the park compared to the news I was given in 2018 following a scan of my brain, which highlighted the fact that I had a stroke, a brain bleed which has left me with severe mobility issues.

I don’t know what your symptoms are, but I’ll tell you what I was like at the beginning and now. I kicked off with tremor and a gormless expression, still managed to get out and about and was active, hacking away in our big garden. Holidays every year to places I could brag about when I came back. Was happy to tell anyone who would listen that I never really felt anxious or depressed, which was true.

Then came the bombshell last year. I take a bucket full of tablets each day to counter my symptoms which I can easily loose track of. The tremor I had at the start and for many years has diminished a bit, I am typing this with no real problems but it’s fair to say that my typing and handwriting has a mind of it’s own. And I still tell people that I never feel anxious or depressed… Which is kind of true!

No. It’s these bloody mobility issues that I am stuck with. I have an array of walking sticks, one Zimmer frame, two wheeled ‘walkers’. and my piece de resistance, a Rascal Pioneer electric scooter which I get round the garden on.

I rarely go out or holiday any more. I have to crawl from the bedroom to the bathroom to empty my wee wee bottle. My life’s like living on a tightrope, like a rock climber as I search for hand holds as I navigate the house. I bounce round the house and garden, my legs stuttering, not responding and running away with me, all at the same time.

It never ceases to surprise me that I hardly ever fall down. How that is I’ll never know, good luck and good management perhaps. But one of these days I won’t be so lucky, I just know it.

Well, JD59 thanks for giving me the opportunity to get this off my chest. I feel better already.
There’s always somebody worse off than you as people sometimes annoyingly say.

I am with you on the humour bit. I don’t laugh a lot but I’ve been known to crack a smile now and again.

Come back to me in ten years, to see if I’m still around.

Jim.
PS. Make that five.

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Hi Annie,
I don’t have a PD nurse at the moment, but it’s on my list to discuss. I don’t want to criticise my GP’s, because I think they are great, but I just don’t think that they fully understand this condition. They always seem to treat each problem in isolation instead of thinking holistically. I expect a PD nurse will consider the big picture.
I may actually wear my pants on the outside, just to see his face :smile: :wink:
Keep smiling,
Johnny :smile:

Jim, I really feel for you, my symptoms are just an annoyance compared to what you are living with… As you say, you can be walking in the park one day, but we never know what is around the next corner.
I know it’s a cliché, but you highlight the importance of making the most of living every day. I do hope that you are still bragging about the places that you have been and the memories that you have made for a long time to come. You sound like a person with a really level headed approach to life and you don’t allow adversity to win. And you know what ? You can get anything off your chest to me anytime you like. Thank you for your inspirational reply.
stay safe, all the best Johnny.