Hello my name is Peter I am 71 for the last few years I have put my aches and pains done to getting old I also had for many many years where my finger on my right hand was really bent in but was giving me no pain or discomfort so I left it, The only problem I had with it was it made my had shake so put up with it for many year, In the end it was impossible to hold a cup of tea or more drastic a pint without spilling any so went to the doctors to see if I could get my finger done, but he said that is not the reason your hand is shaking and sent me to have a check for PD which I was diagnosed with that was 3 months ago I am on medication but know totally confused, was all the last few years with my aches and pains, my forgetfulness the dreams down to this PD I don’t know if I am getting past it or am I getting worse, I am a very active person but its taking me longer and slower to do anything, I have always kept a lot to myself and try not to worry anyone but when on my own i just feel like crying and wondering where this is all going to end up, Thanks for reading feel a bit better now i put that down in words even if no one reads this
Hi and welcome to the forum, @Peterb1951.We have a very friendly community here and they’re sure to want to share their own experiences with you.
It’s OK to feel a bit teary right now. Getting a diagnosis can shock people even when there have been clues and questions along the way. It’s so important to know what’s really going on, no matter what. You’re always going to wonder if this what was happening the whole time. As for where this is going, everyone has a different story to tell, but being active, staying informed, and following your treatment plan will all help.
Keep sharing your words. We’d love to hear more from you.
Forum Moderation Team
hi peter, it is a shock.
my suggestions are
cry a lot, it is cathartic, even now 3 years from my diagnisus i still sometimes go to the end of the garden and cry my eyes out for a while, then i go and talk to my chickens and feel better
reach out to your local PD advisor
i know its hard, but dont be valient or heroic about it, confide in someone. people like to help, and i hate hearing conversations after something has happened " why didn’t they tell someone?",“if only i’d known, i could have helped”,
get involved in research
read Tot’s answers
still do everything, just do things differently, e.g. normal football change to walking football,: using a clock alarm to using reminder alarms on your phone (to take your medication, do stuff)
I too bid you welcome to our forum and I’m glad you found us. It was nice to read you felt a bit better for having written down how you are feeling and it is a good way to stop it going round and round in your head and getting you nowhere. Even better however, was your decision to post to the forum, it is the exactly the right place to come for some non judgemental support whenever you need it because we’re living with Parkinson’s too be it directly affected or by being a family member, friend or someone who is.
First of all I can reassure you that the early symptoms which you have been experiencing for a few years can easily be mistaken to be ‘just growing old’ and many of us probably thought as you did - small incidental things that didn’t cause you much bother and which you had no particular reason to think of as being anything more than that. A good number amongst us don’t even think Parkinson’s or indeed know anything about it until our symptoms start to worsen and we eventually take ourselves off to the doctor, for problems we think or assume can be easily treated and instead we find ourselves in this strange world of Parkinson’s. From what you’ve written this would seem to be pretty much in keeping with your own experience. The reaction you are experiencing now, feeling teary, a whole load of what ifs, confusion etc are all part of the shock that a diagnosis of Parkinson’s can and frequently does bring. The best advice I think we can give to people like yourself who are newly diagnosed is give yourself time to get used to it, take it slow and steady a day at a time. Don’t go mad reading anything and everything you can lay your hands on - chances are you will end up with information overload or worse only remember the worst things about Parkinson’s you may read and feel totally defeated by the big black hole your future seems to have suddenly become. Instead concentrate on those questions you may have about your present and immediate future to help you get through these early days and months.
I’m not going to pretend having Parkinson’s is a barrel of laughs, it’s not. It can be frustrating and challenging and it keeps throwing unexpected curved balls into your path to keep you on your toes, usually when you think you’re going along nicely. I can also tell you, although you will have to take it on trust just now, that for most people Parkinson’s is slow moving and you have time to adjust and adapt as things change. In time you may find you need to do things a bit differently but you may be surprised by the creativity by which you can manage your symptoms and which allows you to have continued life of quality and meaning.
There is no right or wrong way to live with Parkinson’s only what works for you and that can take a bit of time to work out. All of us on the forum who have Parkinson’s have been through the post diagnosis bit just as you are now and we all came through that to reach some kind of understanding of how and what we individually need to do to live with Parkinson’s - you will too. For me it has been to stay positive first and foremost- not always easy and sometimes I want to stop the world and get off - it works for me and in a couple of weeks I will be 13 years post diagnosis. You too will find your way but for now one day at a time is enough. Having Parkinson’s is not the end of the world and life can still be good and worth living if that’s what you want.
Sounds like pd , change your focus and have a look on YouTube for red light therapy for pd and dementia. Also b1 therapy, which works for some people. There is diet for pd and demential , intermittent fasting seems to work for some people. And there are some new ideas and approaches using pharmaceuticals in the pipe line. There are also some interesting videos on PD on BBC iPlayer and a video about Barbra Thompson who had pd for 25 years. Good hunting.
Welcome to the forum. I am 64 diagnosed with PD over 4 years ago. Like you I had a lot of problems holding a cup or glass without spilling contents, legs ached for no reason,very tired, sleeping badly, I ignored it for at least 4 years. I was very active and did a lot of sport and just put it down to wear and tear and getting old. A lot of denial on my part until GP sent me to see consultant, It took the consultant 5 minutes to diagnose PD, then I had brain scan. Medication has been a bit of a trail and experiment to get it right, after a couple of bad years I now feel the medication helps and I feel better. They tell me exercise is good for PD, staying as active as you can makes you feel better.I hope you can stay as active as possible. In my experience its not all been bad, I have met some lovely people who happen to have Parkinson’s, they all seem to have a true grit in them and keep fighting. I feel I am a member of a select club, I would rather not be a member but here we are, as it stands a life member. I did a drug trial for a new Parkinsons treatment and met some inspiring people with parkinsons, there is a lot of research going on that will help in the future and hopefully stop PD or at least slow it down. Your problem with the finger sounds similar to me, my ring finger bends in towards palm and sometimes locks, the tendons on palm are raised and lumpy, its not parkinsons its called Duyrens or Viking Hand, I wonder if you could have that ? Its called Viking hand Im told because its more common in people with scandanavian genes. To balance things my right hand cramps and forms a claw overnight and aches, again not Parkinsons its a trapped nerve in my elbow. Both can be corrected with minor surgery. Best wishes Peter, please speak to Parkinsons nurses they are very good.
Hi Tot and all
Thank you for your reply its good to talk get it off my chest as to speak, I have only told my family so far, I am still working as I love my work but am thinking of telling them as sometimes it is obvious that something is wrong shake hand and I seem too drift of sometimes and get a little confused, after reading your reply made me feel lot more positive thanks again,
Hi @Peterb1951 It would be in your & your employers interest to tell them of your diagnosis so that they can keep an eye on you & maybe help you with your work load what ever form that takes. They can also notify you of any changes you may be unaware of in your demeanor.