The Parkinson's UK Forum is a good place to chat to people who know what you're going through. Here's a copy of a post I put on there (as 'PaddyM') and some replies.
I was diagnosed in 2020, but first suspected something was wrong in 2016 (I lost my balance, fell over and hit my head). I saw two consultant neurologists in the intervening period, the first said nothing wrong (I had an MRI of my brain), the second also suggested I have an MRI - he thought it was a collapsed disc and told me to go away and do some neck/head and shoulders exercise. Then I went to a GP - they gave me antidepressants.
Finally in September 2020 I had a health check and they advised another opinion. The consultant was brilliant, the NHS team at Kings in London were amazing. The diagnosis was made and I felt a degree of euphoria now I knew for certain. The trembling and twitches had got quite bad by now. I am now on the sinemet gravy train, with a load of other drugs, the DAT scan showed I definitely have Parkinson’s, and have done for some time - as I now understand it MRIs are useless in picking up Parkinson’s.
It’s been a tough few years as the fatigue has really kicked in, exacerbated by covid earlier this year. I can’t concentrate, get in a muddle over admin, bad tremors, shakes, twitching and cramps, my left hand always hurts and typing is hard.
But I do two high intensity physio sessions with Neuroheroes.co.uk - really tough but they have helped me get fitter which helps with movement. I do pilates once a week, and aim to walk approx 10km a day.
All good, still don’t feel like the man I was, my work has suffered and I am looking into early retirement.
I have joined the forum to chat to other people with Parkinson’s and share useful information. Who knew that tonic water is good for cramps!
Welcome to the forum, thumbs up to your title post… On the journey and that is exactly what it is. I’m sure you will receive others posts and hope they, as well as mine may offer some help, it is written from personal experience, so please feel free to ask away! Reading your post your dates span over quite a few years, and like you can relate to that moment when you finally have some answers and a confirmed diagnosis, this must have been a drain on you? This took me a while to come to terms with and tbh a good 18 months and really only after completing the First Steps Programme (you can find info on the website if you haven’t seen this) and some really good support on this forum. I think the not knowing is worse, being left to wonder it could be this, that and the other and also difficult when you have experienced the input from different care professionals as you did with different opinions.
What I do take from your post is the positivity in your approach and what you are doing and good on your with 10km a day! I truly believe that exercise and a glass half full approach and maintaining that level of ‘doing’ is key. It doesn’t matter to me if the ‘doing ‘is reading a chapter in a book, going for a walk or managing to catch up with a friend for coffee, it is still doing. I too can relate to don’t feel like the ‘old me’ but again it is a journey, I wasn’t the same person I was in my 50’s or 40’s as I was in my 30’s. So, I have this condition, I’m still me, just another different version on the same journey like you and many others. I recall a friend asking me what was on my bucket list when I shared my diagnosis, I laughed and said nothing in particular, if I want it and within means I have it, if I want to go somewhere, I go, if I want to do something I have always done it. My perspective on that hasn’t changed. I have no burning desires to go out a run a marathon, climb a mountain or a skydive! I read a lot when I had my diagnosis, about starting medication, how it works, how it absorbed into the body, reviewing my diet, though I have a relatively healthy diet. I have regular support and input from OT and neuro physio, I exercise every day more than once, walk every day though some days not too far whether rain or shine. I have found some wonderful support on the forum, there was a YOPD group on here but haven’t zoom for a while with everyone having their own commitments. I found a local support group and joined there, took my mum for moral support to the first meeting, they thought I was very considerate in going with her and quite funny when I told them it’s was the other way around!
Like you fatigue is a BIG issue, very frustrating coming up to mid-day and like you have felt the impact on my career. I reduced to four days but even this is proving difficult, I have workplace adjustments though this was put into place before my diagnosis following surgery, voice activated software helped and even funny at times with training the words! I too am considering flexible retirement/retirement options and would recommend you look at all options before deciding. I have no worries about retiring, though as you mentioned not being the person you were I too felt like this, but at the end of the day, or rather after over 18 months struggling and managing with symptoms and stress this is causing it just isn’t worth it, health has to come first. Do you have contact for your local hospital occupational therapy? At my local hospital I found a wonderful team and had sessions over about eight weeks, pain management, fatigue and coping strategies and still to this day incorporate this into each day. I get up each day and take it as it comes, I don’t overload myself with more than one goal in a morning, I plan nothing after 1400 and get a second wind around 1630 and then go for a walk. I’ve been on Sinermet just over two years now, and currently reading/researching tips on sleep,B12 links and menopause. And I didn’t know tonic water was good for cramps, though did know chocolate raisins help with constipation!
Hope this helps, stay positive and good look with the daily 10km!
An excellent reply from Anon1 in my opinion and I hope you gained something from it. You have clearly had a difficult few years but I would like to pick up on a comment you made in your post and I quote “… still don’t feel like the man I was……” This to me carries negative overtones that are not apparent in the body of your post. The impression I have from what you’ve written is of a man who has had the strength to remain positive and forward looking despite all the curved balls that have come your way during the last few years. If you are thinking of early retirement it says to me that you are not afraid to take the tough decisions Parkinson’s demands and to do so at the right time and based on an honest appraisal of your own circumstances. If that has changed you as you suggest, I would personally see that as a strength, that you are actively seeking out ways to manage your Parkinson’s and whatever it throws at you in a constructive way.
I didn’t take early retirement but was offered an unexpected opportunity to take voluntary redundancy which amounts to the same thing. If I can offer one piece of advice it is to give some thought as to what you might do with your time. Loss of structure and routine can be difficult for many and give rise to increased problems with one’s physical and mental health. Given your commitment to a strong exercise regime I doubt this will be a problem for you, but it is nonetheless worth highlighting. For me a big positive in finishing work is that your Parkinson’s can be fitted into your life and not round the demands of a working life which all too often doesn’t give the flexibility we need.
Perhaps you are not the man you were, maybe some of your skills have decreased, but there is no reason to always see that as a negative. Parkinson’s may steal a lot from you over time; it can also give many opportunities to view life in a unique and creative way if you choose to see it. We who have Parkinson’s may ultimately have to acknowledge his hold is greater than ours but the journey to which you referred is not a one way street unless you choose it to be. I very much doubt that will be your choice. You are stronger than you think.
PS I didn’t know about cramp and tonic water either.