So, where to begin? Six months ago I realised that my left hand had started to tremble. I could stop it, but as soon as I ignored it the tremor returned. Yesterday I attended my second appointment at a hospital in Cambridge and was told that there is a 90% probability that I’ve got Parkinson[date=2024-03-05 timezone=“Europe/London”]s. I’m a few weeks away from my 70th birthday. All my life I have been fit and very active, and I still cycle thousands of miles a year. I have no intention of letting that slip, but worry hugely about how things will pan out for the future. I’m also into my cars and motorbikes and guess that those hobbies are going to become a problem. The specialist I’ve been seeing is now organising a scan for me, but I’m only expecting it to back up what he has already told me. I guess this is the first time in my life that I have been truly scared for my future. If you are reading this post, you have my best wishes.
Hi Kevf,
Welcome to our community forum, and please accept our best wishes as well. You’ll soon hear from our lovely community, and you’ll learn, among other things, that you are definitively not alone. And not just in terms of Parkinsons. Our forum is loaded with artists, poets, athletes, musicians, and fighters of all stripes. We happily expect that you will find some measure of relief as part of our community.
We’d also like you to be aware of two primary tools that will assist in your journey. Our website, at Parkinsons.org.uk, where you will find a wealth of information – everything from research news to archived forum discussion threads. It’s easily searchable and we hope you will have a look. Added to this, we have a free and confidential helpline staffed with highly knowledgable advisers who are happy to lend an ear when you need one. You can reach them on 0808 800 0303.
With our warmest welcome,
Jason
Forum Moderator
Good evening Kevf … Sorry to hear you have a tremor. The first thing to say is you should wait for your scan results before assuming you have one of the forms of Parkinson’s. My understanding is that a positive Datscan [Special brain scan to check the dopamine levels in your brain] tells us you that you have Parkinson’s. An ordinary brain scan checks on whether anything else is causing your tremor.
If you do have Parkinson’s confirmed you will need to tell the DVLA [by law]. No big deal if your medical team say you are fit to drive. You get a 3 year medical licence.
I have one of these licences.
It certainly sounds that if you have Parkinson’s you are at an early stage.
There is medication to help & certainly in my case the symptoms are on the manageable side.
When I first found out I had Parkinson’s it was a big shock but you get used to it.
Most people here are at different stages of Parkinson’s & everyone’s Parkinson is a little bit different.
Eat properly & exercise regularly. This will help.
Best of luck.
Any questions please ask.
Steve2
Hi Kevf
I completely understand your fears etc as I am in a very similar situation and a journey just a few months ahead of you. Most days I am very positive but some days the unknown scares me as I too am an active very nearly 70year old and love my life and don’t want to give it up !
The long waiting periods between appointments are difficult , currently waiting 6+ weeks for DAT Scan results.
But to end with a positive note I can assure you that driving will not be a problem if you are capable I received my new medical driving licence this week .
Good evening julesb & welcome. I am also 70 years old. Delighted to hear you are active. My frustration is that I have both Parkinson’s & diagnosed Neuropathy. One of these or both of these issues are meaning that on bad days like today I can hardly walk. Sitting down seems to stiffen me up so that I struggle to get up off the chair & when I manage that I really struggle to walk.
Since the Neuropathy diagnosis after tests nothing has happened. Maybe
3-4 months since these tests. Is there any treatment available that will help me?
It is not knowing that is so frustrating on these bad days.
Still these struggles seem to go in cycles & in a few days time maybe I will have a run of good days.
Ho hum, life goes on.
Best of luck & make the best of the good times.
Steve2
To everyone on this post…
It’s my wife who has Parkinsons. She used to teach flute as a peripatetic teacher, driving dozens of journeys a week in term time, to several schools in and around the county. As the pupils declined, and as parents could not afford the lessons any more and as covid struck everyone in its many ways, teaching became impossibly difficult. How do you teach flute at 2 metres distance, or on Zoom? How do you run duets or larger groups when you don’t have the benefit of a BBC studio.
Everyone suffered of course - factory workers, farmers, doctors, admin …people.
So the end of her career (which she and I adored) was a crash, not a peaceful road to retirement. Then Parkinsons came - the retirement turned into isolation and she was no longer able to drive - the tremor was just too great for her to feel safe. And of course, she could no longer play the flute.
Her mobility round the house is slow, but generally stable - her mental and physical problems have definitely been helped by her medication in the months that followed the diagnosis. It was all so sudden, and a shock to both of us. We are both approaching 70, we had hoped to travel abroad for a family wedding. This horrid disease has taken that away from her, and it is almost as if I am the one suffering. I can’t do anything to stop the progress, but I can be her helper. She (we) accept that she is suffering, she (we) accept that the rest we looked forward to after the trials and tribulations of parenthood, educating musicians, and rebuilding old friendships in a different mode has been taken away. But she keeps going - she has to, and though there are times when both of us are shattered by it all, we are not going to let go.
As an observer, then, I get a boost from hearing how you cope, how you work out ways to balance despair and hope.
I’ve always been a slop at heart - I can cry at the sad movies, and the happy endings. Our time together has been worth it. Both of us are frustrated by the not knowing. But we still have times every day when we realise that we have had and can continue to have good times together.
Joining this forum is a positive move for all the sufferers. We have tried to be open about the struggles my wife has. Open to friends, to family, to those who work in shops and so on. Open to each other. Otherwise, none of the efforts of the last decades will have paid off.
I witter on - simply put: a glimmer of hope, a wry smile, a recognition of coping with it all is important, and helps us both. She (we) know we are not alone.
Thank you.
suesbestmate