Which way do I turn?


I am currently 43, was officially diagnosed at 39 and had started displaying symptoms at 36. I have experienced a range of symptoms, and also have family history on both sides that cause added concern. I have been told on several occasions that my case is quite complex and have tried to condense down as much as possible here, as the larger picture is very much larger!

To briefly summarise my query, along with mobility and tremor, I get dystonia in my feet and chest. Feet are very painful, but pass and I can get on with things. Chest can be persistent, highly unpleasant and last for a couple of days up to a couple of weeks. GPs tell me to contact specialists, and specialists ask me to get checked out by GP to rule out other, non PD causes beforehand. 111 refer me to 999 because I mention chest pains. Ambulance or Emergency refer me back to GP or specialist because it’s muscular and non life threatening. Trying to get any advice outside of appts is near on impossible and appts can be weeks, sometimes months away. I don’t like asking for emergency slots with the GP, because I know the root cause is ongoing, that they will say to see the specialist, and feel that I could be taking a slot from someone who does have urgent needs. So I am left lost, not knowing where to go, trying to manage myself or hold out until the current episode passes. If anyone has experienced similar or has suggestions they would be greatly welcomed.

Thanks in advance.

Hi and welcome to the forum @YOP1979. It sounds as if you are going in circles and I can’t imagine how frustrating and scary this must be, adding stress to the Parkinson’s symptoms. This is a friendly and supportive place and I hope other members who relate to your situation will be able to offer some suggestions. You’re in the right place to talk about what’s going on with you and find people who will listen.

Our helpline is also a great source of support. You can call our advisers on 0808 800 0303. Our page on Young Onset Parkinson’s could also be helpful since there are resources there to put you in touch with other younger people with Parkinson’s.

Welcome again, and we are looking forward to learning more about you.
Forum Moderation Team

Hello YOP 1979
I’ve read your post a couple of times and wished I could offer something constructive but sadly I can’t. It’s no help or consolation but it is true that when someone like yourself doesn’t fit into a single scenario it can be a merry go round of a system until you hopefully eventually get to the right person. The only thing that did occur to me is that while I entirely understand your not wanting to take an urgent GP appointment maybe you should consider doing this once. Your situation may be ongoing as you say but it is clearly not doing your mental health any good which is just as important. Make a list of your concerns much as you have written here along with anything else and ask the GP what you should do because the stress is exacerbating the difficulties you are having. It may not be life and death but that doesn’t mean there’s no urgency in your situation either. From time to time I have seen people suggest seeking a private assessment in your sort of circumstances just to get the ball rolling. it’s not something I’ve done so don’t know much about it and it can be quite an expensive option but it may be an option you want to consider. I would also endorse what Janice has written.
It’s not much but I wanted to reply just to let you know that we mean it when we say you’re not on your own on the forum even when like now, I don’t feel I can be of much help. Hopefully someone else can help.

Hi, thanks to you both for your advice and support. One thing I realised I had omitted to say was that when it is the “regular” aches in the upper body, I just get on as best I can. The times when I struggle are when I experience flash or sudden sharp pains, or pain alongside other irregular symptoms (such as fever, coughs, narrowed vision, and so on.)

I have raised this with gps, consultants and nurses during previous appointments but either get passed along the chain or offered some medication “that may or may not help - see how it goes and come back to us in a month.”

I referred myself for CBT last year, but didn’t really fit the mould for that course, but they did steer me towards a support course for people living with long term health issues, which was much more beneficial and appropriate. Unfortunately the course was for a set number of weeks, and while I have been less anxious and better equipped since taking part, it hasn’t altered the pains or their sudden onsets.

There is history of heart problems on my father’s side and neurological conditions on my mothers side, so that plays on my mind when the severe/new instances occur.

I started seeing a new team in January, but they are not local, and can be difficult to get hold of inbetween times, but when I can next speak to/see them, I will try again!

@JaniceP Thanks for the advice - I will look into the Young Onset pages.

@Tot thanks for the suggestion - I did actually book a private health check last December, and attended after a 10 week wait. Physically everything was in safe or average ranges, aside from the expected symptoms. It was reassuring, but no solid guarantee that a future instance couldn’t be something more serious.

Thanks again.

Hello again YOP1979
Thanks for your reply. I have been wondering if it is perhaps worth turning things round and think about your situation a little differently. This may be a totally rubbish idea but in the absence of few alternatives it might be worth giving some thought to it.

In some of my posts I make reference to what I call my Parkinson’s brain, not an official term just something I made up for when my usually positivity is a bit lacking and negative thoughts take over - that’s my Parkinson’s brain in action always loud, strong and hard to fight. Once I realise it’s ‘switched on’ which I am slow to do at times I’ve developed range of strategies to help 'normal’brain kick in and shut Parkinson’s brain up or at least quieten it down. These can be all sorts from answering back to a worst case scenario with a yes but silver lining scenario, doing a relaxation (there are loads of ideas on the Internet) listening to music, doing one of my hobbies, getting out in the fresh air and yes even now and again punching a pillow - surprisingly effective and very satisfying that lol. Your situation is complex and I’m not suggesting this kind of thing will solve everything but if you can switch off your brain or at least slow the non stop thoughts it may give you a break and a bit of peace albeit temporary. I would just say that if you can find a method that you like and are prepared to practise a bit relaxation can be very effective.
Ignore if not for you but it might be worth considering this sort of thing.