What help is there?

I am 40 years old and was diagnosed with Dystonia a few years ago. My Dad was also diagnosed in his mid 30’s and has managed with it well. My uncle was diagnosed with Parkinsons about 10 years ago.
Over the last 2/3 years I have had a constant tremor in my right hand, trouble swallowing, my gait is a lot shorter and slowness of walking (I used to run marathons and triathlons). I struggle with memory at times and my speech is slow and quiet, I am also having issues in the bedroom that have not been a problem before.
I was seeing a consultant in Northampton who barely saw me or talked to me and said I had depression and it was FND.
I have since been to a movement specialist at a different hospital. He has said it is not FND with the symptoms I have. He has completed some genetic testing which I am waiting for the results from and he is also arranging a DatScan and an MRI. It is taking so long and i just don’t know what to do, it is making me very low and having a big impact on my relationship with my wife.
I am on Tramadol, Gabapentin and Clonazepam at the minute, I am not sure how much they are helping but I think the jerks are slightly less, but the tremor is constantly there, and the pain is better, but still there.
It is a real worry what will happen with work, will I get a diagnosis or not, and everything is taking so long. At the minute I am being told to work from home so I am missing out on the relationships I have at work on a daily basis and just feel I am stuck at home all the time. My wife thinks I shouldn’t drive because of my tremor, but the consultant says that it is my choice. How will that end up if I do have an accident?
I just feel stuck and depressed and do not feel that people understand how it feels every day. How do other people cope with this? Should I be using mobility aids (my wife keeps suggesting a stick for walking), should I be claiming PIP or any other mobility type allowance or should I be waiting for more information?
It’s a very lonely place to be!

Hi DClarke,
We’re sorry to hear things have been difficult lately. However you are most certainly not alone, as others will soon attest. I’d encourage you to call our wonderful helpline, at 0808 800 0303, as one of our incredible advisers would be happy to help you find answers to these questions. It’s free and confidential and they are truly eager to help.
Best wishes,
Mod Team

Hi @Dclarke31 for your bedroom department issue you need to get your GP to prescribe Sildenafil, this is basically Viagra. For tremors I find that Madopar works for me but I am a greedy so and so as I have both Parky and Dystonic !! It may be in your interest to chase up the results and when you’re going for your DAT/MRI Scans, try speaking to your specialists secretary. For advice on claiming P.I.P. it would be worth speaking to Citizens Advice Bureau they will tell you what you can claim for even now !! As regards to your Consultant at Northampton perhaps you should seek a second opinion. With Addenbrookes at Cambridge not being that far away it may be worth a try. By venting your feelings on here you’re among people in the same boat so never feel depressed as there’s always someone about to offer up their experiences. All the best.


Please use the Parkinson’s U.K. helpline they are very good lots information and help.
Sorry to hear things are tough for you that period of not fully knowing and hoping it isn’t going to be bad news is enough to set anyone down on the slippery slope of depression. Couple that with Anxiety and Depression are all part of the Parkinson’s package it is hardly surprising you are suffering. The antidepressant medications are probably not helping in the bedroom department but I’m no expert there.
The whole life situation you are experiencing with working from home is robbing you of outside contact. Can you arrange to meet some of your work colleagues outside of work for a walk, chat, drink etc. Anyone else to talk to will (including Parkinson’s U.K.) benefit you. Do you exercise, go to the gym they too will help, just getting outside and walking if you can will boost your well being generally. You might want to consider taking some vitamin D as most of us have very low vitamin D from being inside and lack of sunlight.
As for using a walking aid, do you feel you need one, is it pride that is stopping you ? If using one helps and you feel more secure use one.
Parkinson’s and it’s associated problems brings fears and worries and your wife will be feeling them too. Personally being a wife of a Parkinson’s sufferer I found the best way for me to cope was to find out as much as I could. I use this forum not my husband who has Parkinson’s, he chooses not to. I know I keep banging on but Parkinson’s U.K. helpline is also there for your wife.
As for claiming benefits I am no expert and there are others that can help you here. What I would say is it’s a mine field, we were surprised when we discovered that the element within Disability Living Allowance - now PIP (I think) given for mobility is not available to those claiming after the age of 65. So seek help on claiming benefits, I would think a formal diagnosis from your DATscan will aid you.
Lastly but not leastly my husband and I sought help from Relate in the early years (he was diagnosed 10+ years ago) of his diagnosis you and your wife might want to consider that, being able to both discuss your fears and feelings in a supportive situation was greatly helpful.
I wish you well in this journey, you will find your way, reaching out here is just a start. Very Best Wishes Jane