Hi. This is my first visit to the forum, actually it’s not. I should say i wrote it the first day i joined the forum but didn’t have the nerve to post it. I am in my fifties and have had PD for 22 years!
I have tried numerous medications over the years. Have experienced the side effects too. Dsykinesia then being “off”. What I find really hard throughout the years is trying to understand why every day is so different. I mean one day walking around the home, the next day barely able to shuffle. Does anybody else get this??
I decided to join because it has taken me 20 years to start accepting the disease. Seeing it in writing brings it to home more and as my disease is progressing I am having to accept more equipment and help so that is also hard.
I’m now on the last resort medication Duodopa. 2 years now, trying to remain positive .
Hello Barts and welcome to the forum.
May I start by saying you shouldn’t be so hard on yourself. Parkinson’s doesn’t play by anybody’s rules except its own and yours. You say you’ve spent 20 odd years living with it, no little achievement in itself and have now decided its time to accept it and it’s deterioration. I would say that your way of coping with your Parkinson’s was to not acknowledge it to any great extent - I don’t want to put words in your mouth here because you don’t say but it might be denial, or you went into fight mode or some other reason to help you get by. There is nothing wrong with that it was simply your way.
I don’t need to tell you there’s little about Parkinson’s that is constant except perhaps you can’t ever leave it behind. We all develop strategies to cope with the shifting sands upon which it seems to be built and to me having to tweak and change those strategies in order to continue to live with Parkinson’s is just part and parcel of the cards fate has dealt. It seems to me that is what you are now doing.
To me staying positive is very important and you don’t need to see many of my posts to know that is the key to my own approach to Parkinson’s and which has stood me in good
stead for a number of years. However as I have written several times, this doesn’t mean seeing things through rose coloured specs but rather being honest about what is happening with progression of my condition, doing what I can to reduce its impact but above all never forgetting that this is my life - and whilst I have my moments of ‘stop the world I want to get off’ I have no intention of doing anything other than live the best life I can. It was nice to read you are trying to stay positive but how you do this depends on how you choose to see it.
It’s been hard to know what I can usefully write to you in reply as you seem a little lost at the moment and maybe it will be enough just to get a reply for now, to let you know that here on the forum you are not on your own so if you have any questions or concerns please do post again. I do hope however that at least part of what I have written, has helped just a bit and encouraged you to accept above all else this is your life and you can choose to accept you are on ‘last resort’ meds as you put it as if that’s the end or you can decide you’ve still got a life worth living. I hope your change of direction in coming to the forum pays dividends for you even if desperation led.
Hi Barts I was diagnosed in 2010 so it’s looks like we are twins ?any way I was so glad to read your post, knowing that you are having similer problems to myself. The other day hubby and myself were going into town, and getting to the end of our close I could not go any futher, I was not frozen to the spot it was just my legs and knee’s felt like a ton of lead, and it was taking me all my time to put one foot in front of the other. The day before it was just like running about as a 2 year old, I did not have many problems since 2010 but last Aug I had a argument with a concreat slab, and guess which one won. So know what next well we have booked a river cruise for July will i beable to go ? any way keep posting and watch this space.
Yes it does get frustrating. I have just got mobility scooter so i still get my independence. HATE being in wheelchair so better option otherwise it was stay at home and feel sorry for myself.
Hi @Barts I’ve only been diagnosed for a few weeks, so it’s interesting to me that you’ve had PD for 22 years, inspiring and heartwarming actually. I hope I don’t have to come on again for 22 years as that will be a good sign. I wonder how you felt when you were diagnosed. I’m split between ignoring it, literally forgetting as I’m caught up in work, life etc or being so upset and feel like I’m on minimal borrowed time (and literally panicking wildly about how much time, how long can I do this). What have you been doing for the last 22 years, sounds like it will be an inspiring story for me. I’m 51 so although not technically early onset it feels very early to me - mid career, kids, active life, mum and dad to look after etc…
Hi EmilyD I have also had PD since 2010 and it did not show it’s face till last year. When I first went to see my PD nurse she wanted me to go on med’s. I refused and went on as normal for about a year, but even after a year on meds I myself did not notice much differance. Every six month’s my PD nurse would change my med’s either she was very, very good or I ask my-self do I really have PD, but last year PD decided to show it’s true colour’s. So all i can say to you, Is just carry on as you normally would, but do take notice of your nurse. Some people show PD from the start. Take each day as it comes, but don’t put your life on hold.
Thanks for the advice @mary1947 if anyone else has some for me then I’m all ears. I’m particularly interested in what you would do different knowing what you know now.
Hi Emily D
I don’t know is the answer. I dealt with problems as they showed themselves. Took advantage of being diagnosed early on with the disease when I only had few symptoms and travelled, did outdoor activities realising that my retirement was not going to be like I thought. I even wondered if i would reach retirement as i read the average age living with PD is 20 years!!!
Make the most of how you are now cos sadly things change.
Hi EmilyL to be honest I am not sure that I would have done things any differently Not sure if I have put down years ago when I joined the forum. When in 2010 the specialist told me that I had PD, my other half sat down to discuss the future. Well the house and car were paid for, my 2 boys had married and now had there own families, So what next? we decide to sell the house as we were getting hoildays but did not have a lot of money left to spend on exters. Friends of ours were in a housing ass bungalow and he ask us if we would like to take a look, well you had all the benifits of inderpendent living but you also had the surport of a manager and pull cord line if you wanted help, so we sold up and moved in. As we liked to travel and at the time PD had not court up with me, so we went out to see the world, we booked a lot on line, brought a Freelander and took off. We have been to America/ South Africa/all around Europe/ Hong Kong/ War Graves in Fance //concentration camps./ Aus / New Zealand and many more there are still a lot of places that I would like to visit. but now PD is making it’s self known to me. So I am gratefull for what we have done. If I could go traverling again tomorrow I would but you neverknow what PD has in store for us.