My name is Sally and my husband, Steve has just this morning been diagnosed with Parkinson’s.
We are determined to remain positive and to see this as the start of a new journey in our lives.
We are in our seventies and have been worried about Steve’s health for a while. It has taken the NHS a while to catch up with us so it was quite a relief, in a way, to be able to put a name to the health issues. This has enabled us to reach out and share our experiences and feel reassured that there is life after such a diagnosis.
Joining the forum has already instilled some confidence that we can do this and that there is still fun to be had by meeting, and messaging with others and hear their stories and share ours.
Hi Sally and Steve, thank you for sharing your experience with us. We’re here for you and so are others on this forum. It’s great to hear that you’re determined to stay positive and are already finding confidence in meeting and messaging with others.
It might be helpful to know that we have lots of information on our website that can provide insight and guidance around symptoms as well as management of these which can help guide conversations with medical professionals. You can read more about this here: Health professionals and Parkinson's | Parkinson's UK
We also have a helpline where we can put you in touch with one of our Parkinson’s nurses who can offer their advice and guidance as you navigate through Steve’s diagnosis. It’s free to call and totally confidential: 0808 800 0303.
Good evening Sally … I am 71, I live alone & I have Atypical Parkinson’s. I have had a datscan and 5 opinions on it. 3 said it was positive for Parkinson’s or Parkinsonism, one said it was normal and one said it was borderline positive. So I am back on my
Co-careldopa and Rasagiline.
With me it’s not just Parkinson’s it’s a number of different health issues which clouds diagnosis.
If you have any questions do ask.
I would add there are so many of us here called Steve.
Hiya Sally and Steve,
Welcome to the forum and well done for being positive about your future together. Here’s a link that I recently shared with a lady and hope it is useful for you too. Good luck to you both.
Thank you for your reply. Its so reassuring that someone understands the difficulties. It certainly sounds like you have a few especially living alone. Do you belong to any Parki son’s support groups apart from this forum?
Were just starting out so finding our feet with the whole concept.
Hello Sally … Just this forum. No other support group. I think living on my own I have to adapt and be mindful of things that might harm me. For example always having my mobile phone to hand.
I do have a good Parkinson’s Nurse who I can contact.
I think the Parkinson’s issues I have are different to what others have to put up with.
Not better or worse just different.
Hi sally and steve. My husband also has parkinsons. We are 7 to9 years into the experience. We use the forum, listen to pod casts, movers and shakers, 2 parkies in a pod, we get lots of info from Parkinsons uk, and we have parkinsons nurses who can be contacted for advice. There is a lot out there , it can be confusing if you go at it all at once! The best info and advice comes from here, from people who live with the condition and their partners.
I was diagnosed this January and I’m 51, I began meds straight away (Co-careldopa x 3 daily)
Great that you’re here, there are some different things to do on this forum such as song challenge and poetry/writing
I also began attending a Parkinson’s Boxercise class 2 weeks ago which is great. I’ve meet 3 others with PD and it’s lovely to make new friends that understand what’s what. Some towns have a chatty cafe or like mine an exercise class.
Good morning Sally … You might get your doctor to refer Steve to the neurological physiotherapy department at your local hospital. They do a 6 week course in the hospital gym with a trained Physiotherapist and probably a volunteer. There might be
6 in the class with Parkinson’s. There were only 2 of us in the 6 week class I took. So I got one on one coaching. I got assessed before I did the course. The tasks were basic like getting up from a chair without using your hands, balancing on one foot, walking toe to toe etc … My score was 32 out of 50. I was unaware that it was competitive, if I had known I would have tried harder. You are given the same test after the course
has finished.
A useful information source on all things PD is parkibot which is à AI resource that can give you answers quickly by referring to known data . This saves you hours of looking and can provide answers in minutes.
This is good advice from Steve and I wanted to tell you about the class I go to every week which is run by Age UK and because I have Parkinson’s it’s free for 4 months and by then I hope to graduate to the next class up which costs £5.
The exercises are basically the same as Steve described and we have a cup of tea and chat afterwards.
There is a lot out there including singing and dance groups too! Great for meeting people going through their life with Parkinson’s!
Good luck in whatever you choose to or not to do and let us all know how you get on.