i am 56 and have recently been diagnosed with parkinsons with no tremor just a numb weak arm and small writing and a bit off dizziness and a slight lean forward when walking but not obvious. What does the next 5 years hold for me is it a wheelchair! a bit scared
Hi @kay2, welcome to the forum. I was diagnosed 3 years ago but can honestly say that PD has had very little impact on what I can do so far. Everyone responds differently but for many people it is possible to carry on much as normal for several years.
Have you had a chance to talk things through with your consultant or with a Parkinson’s nurse? Make a list of questions beforehand so you don’t forget anything you want to say. You could also call the PD UK helpline (number at the top of the page).
All the best
You’ve received some really good advice from @Singing_Gardener and I’d encourage you to take it on board. However, as she suggested, Parkinson’s affects everyone differently and your concern for the future is completely understandable.
In addition to our helpline service (the number for this 0808 800 0303), we have a lot of useful information on our website including an introductory guide to Parkinson’s which contains info about symptoms, treatments and living with Parkinson’s. Many of our members who have been newly diagnosed have found this page to be particularly helpful so please take the time to check it out. You can find this section here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
I’m a firm believer in the positive mindset . I’m not saying put your head in the sand but don’t look for trouble and things that may be because of PD. It WILL catch up with you but make use of that head start you’ve got and enjoy every thing in the here and now.
My tactic was not to tell anyone for a year… the first thing people always say is When you tell them is “oh sorry to hear that” By breaking the news to people by saying “ oh didn’t you know? Yes I’ve been diagnosed for a year now” I made them think “wow I didn’t notice” which meant they looked back and compared instead of constantly watching me waiting to see signs of it.
This also meant I had a lot of positivity surrounding me and none of that (albeit we’ll intentioned) poor you attitude that can bring you down
PD seems to have a different path for each of us! I was diagnosed 10 years ago although I had symptoms dating back years beforehand. My GP thought it was RSI (Repetitive Strain Injury) and I tackled the symptoms through exercise. When I moved house several years later I got a different GP. When I started have problems with random movementsin my left leg he referred me to a Movement Disorder Neurologist. The diagnosis was a bit of a bombshell particularly as I was just about to retire. He was keen to get me on medication but I resisted for several years - keeping myself fit and active with tai chi, line dancing, pilates and walking.
I then developed a frozen shoulder which so painful I started Sinement and the shoulder gradually improved. I have now been on medication for just over 2 years. I still keep up with the exercises and think my main recommendation to you is to keep active - including lots of stretching.
Like @Lainer I didn’t tell anyone and still haven’t actually told anyone as they all seem to understand a ‘frozen shoulder’ and ‘restless legs’! I am also geared up for coming clean via ‘Oh didn’t you know - all the problems with RSI were actually …’
Hey I was diagnosed at 47, 54 now. I havent really progressed in that time. I thought the same as you and in a wheelchair by 5 year point. You have time for your meds to be adjusted and added to keep you stable. Everyone is different progresses at different rates and different symptons. Keep exercising eat well drink lots. Keep happy and active and positive. If you are on sinemet dont eat protein meal at the same time. Take meds on a empty tummy and dont get constipated. Also your have good days and bad so don’t over do it. Remember you have parkinsobs, it doesnt have you
I was diagnosed 8 years ago despite showing symptoms for 2 years before. Until last year I was working 12 hour days 7 days a week running my Pub. Everyone’s PD is different.
there’s lots of help and support out there. Try and get on to the PArkinsons Management course. I did in my second year. It helped at lot at the time. meeting others at various stages of PD. The longest diagnosed was 17 years. The good news is Parkinsons is not a death sentence it doesn’t kill you.
Find out who your local PD Nurse is and ask for a meeting. They have a wealth of experience and offer advice tailored to your particular type of Parkinsons.
I went on to Parkinsons meds straight away. Don’t hesitate to start. They improve your symptoms. I try not to let it stop me doing things but of course my wife and I have had to make changes.