Scared, anxious and miserable

Hi all,

Not really sure what to write here. Basically had a terrible last 14 months and mentally, I have had enough.

February last year, I had a car accident and luckily my daughter and I walked away from it. A few months later though, I suffered what I now know to have been a mini stroke.

Last August, I noticed a testing tremor and fasciculations in random parts of my body. Facial numbness, very painful left arm/wrist and suddenly some very strong spasms.

What followed was rapid onset fatigue, balance issues and extreme muscular weakness.

After experiencing a nightmare with my GP, who initially and inexplicably suggested I had broken my wrist, then suggested MS and then said I had nothing to worry about, it would all settle down, my wife and I panicked and spent our savings on going private. MRI ruled out MS but picked up the small vessel damage. Spinal MRI picked up Cervical Myelopathy and severe lumbar degeneration. Having already spent over 7k on private consultations with a Neurologist and Spinal Specialist, I was told that surgery would triple our costs and we just didn’t have the money.

NHS neurologist refused to even look at the info we had gained privately, told me my symptoms were psychological and would go away. I asked for a second opinion and was sent to the same NHS neurologist who got me doing all these movement tests in front of a packed in patients waiting room, I felt degraded and to top it all off he got angry with me when I asked him to repeat an instruction and yanked my foot back really hard. At this point I was having real issues with walking. Really struggling and he said he would re assess in 6 months!!

Because at this point it had been a year since I was first referred, I demanded to see a different neurologist at a different hospital. What a difference. She straight away said that Parkinson’s was the most likely diagnosis but I also needed back surgery which she felt would reduce the severity of my symptoms. In 2 months I have been seen, had a verve conduction study and a DatScan.

Trouble is, because of how long this had already taken, my mental health has taken a huge hit. Financial concerns, job security, teenage children, feeling so uncomfortable lol the time, has all taken its toll. I know I am lucky, I have a huge support network at home and my wider friends network but I worry about the impact of my mood swings on my wife and family, my long term availability to work (even though my employer has been fantastic).

How did everyone else cope with all this?

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Hi Steve,
We’re very sorry to hear you had to go through so much difficulty before arriving at a medical team you trust. You are certainly entitled to feeling upset, on top of the stress Parkinson’s and the medications can cause. We would invite you to please call our helpline at 0808 800 0303, and speak with our trained advisers who can point you to local resources and offer loads of options to help. They really are an invaluable resource, and their expertise extends far beyond the strictly physical to include mental health assistance, among other forms of aid, and they are happy to make life easier for you in any way they can.
Best wishes,
Mod Team

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My You have had a bad run, But feeling sorry for yourself is not going to help, and just to show you are not alone in having bad runs here is my last 12 months.marked deterioration in parkinsons symptoms diagnosed 12 years slurred speech balance problems a fall down stairs leading to a bleed on my brain meaning automatic loss of my driving licence for 6 months being over 70 I have to apply for a new licence every 3 years I will leave you to guess the problem I had getting a renewal especially with having to declare My PD we had a short holiday in June to try to get away from the worry of Covid 19 as my wife is at a great risk having Idiopathic pulmonary fibrosis while we were away I had a small bump with my car I have just got it repaired inn time to attend my younger brothers funeral. I have an appointment with my neurologist in a few days time and one thing I can guarantee is that whatever else he sees there will be a smile on me face. So stick your chin out sunshine let life take another sock at it and keep in there fighting

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Hello Steveindevon
First of all I would encourage you to ring the helpdesk as Jason suggested. Aside from getting good information that you can trust, the very act of speaking to someone neutral but well informed may help.

You quite clearly have been through an awful lot and it’s entirely understandable that you feel as you do. Financial concerns and job security are always a huge pressure because of the potential implications, teenagers are simply testing everyone and everything as they become young adults and to be in pain and discomfort is very debilitating because it is exhausting. You would be unusual if you didn’t feel low. However if you think about where you are now, today - your teenagers won’t always be teenagers although I accept that particular concern will be around for a while. It may be worth bearing in mind that in some ways they have lived through the last 14 months as you have and your wife too. Now they have to live with your Parkinson’s which they probably don’t understand or know much about. It must be a difficult time for them too and on top of that they are teenagers. Quite a toxic combination. I know I’m not telling you anything you don’t know, but it’s worth remembering not least because you may be the one with Parkinson’s but it affects everyone. I hope you are now in less pain or at least it is better controlled because that will make a difference. Financial concerns and job security are the hardest to address. I have no wish to pry only to say if debt is an issue there are organisations that can help citizens advice being one. With regard to your job security you say your employer has been fantastic and you speak of your long term availability for work. With respect if your job is not at risk just now I wouldn’t waste too much time worrying about the long term because you don’t know what that will be. I do understand the concern but all you can realistically do is financially plan as best you can and then deal with matters as they evolve. Parkinson’s moves slowly in most people so you are unlikely to have to suddenly lose your job especially as your employer is being supportive and there are legal protections in any event. It may be worth familiarising yourself with that side of things - to be informed will help your decision making as and when you need.
Nikobins is right we all go through the mill at some point. The last two years have been rather a challenge for me and I did unusually write about that on the forum. You won’t need to read many of my posts to know that for me the strongest tool I have is a positive attitude and having now reached calmer waters, that has once again seen me through. Again as I have said several times here on the forum, having a positive outlook does not mean being relentlessly upbeat and seeing things through rose coloured specs just the opposite in fact. To me it means being true to yourself and being honest with yourself - recognising when you’re having a god day not only the bad that can make you feel you only have bad days, recognising all feelings and emotions as legitimate, recognising that your coping strategies don’t come with 100% guarantee and that’s alright, accepting I can’t do everything I once did, or need to do it differently and more to the point recognising when change and action is needed. You get the idea and by thinking in that way you start, I believe from a position of strength that somehow gives the ability to keep going when the going gets tough overlaid with the conviction that I will survive and come out the other side and that I still have a life worth living. My positive approach in a nutshell is an active choice which I make efforts to maintain. That’s my way, it works for me. Nikbins way is to put a smile on your face and keep fighting. We all have to find our own path and way to manage both the physical and mental challenges. If you give yourself a chance and with a bit of time and patience you will find your way too. If you are stuck for a starter you might want to look into starting a gratitude diary which have been proven to have a positive impact on mood.
I wish you well.


Gosh, you’ve been through the mill.

I’m at the beginning of the diagnostic journey and am wavering about the possibility of ‘going private’ because I am in pain, have lost the use of one hand, and am facing a 4 month wait to see a consultant for the first time.

I’ve been trying to get a guesstimate of what it all might cost - you say you’ve spent £7k so far - yikes! My worry is that I’ll just spend a lot of money that I need for the future.

I can only echo your “How does everyone cope with this?”

To me, Uncertainty (about my future health, and my financial security) is the hardest thing.

Private neurologist is about £350 per appointment. I have had 3. MRI was £1400. 4 appointments with a neurosurgeon/spinal surgeon at £400 each. Then regular chiropractor appointments for a year at £35-£50 per session and regular physiotherapist appointments at £30 per session. It soon adds up but if you research the consultant properly, you won’t need all the other add ins because I have got the damaged spine as well. Hope it works out for you. Speak to your GP.

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Hi @SteveinDevon I am unaware of who you saw in the NHS but I am under Dr Harrower at Exeter RDE and he is really good. May be you should speak to his Secretary about your problems and who you saw. Sorry this is brief but I will respond again.


Hello SteveinDevon
Hope it’s a beautiful part of Devon :wink: reading your post saddened me as my husband also experienced a very similar response from an arrogant rude specimen of a man masquerading as a neurologist. At the second time of being sent to see him he greeted us lounging back in his chair with his feet on the desk stating ‘I’ve seen you once before couldn’t do much for you then what do you want now’ ! Similarly this had taken over a year to be referred again confounded by a GP who accused my husband of being on a mission to find something wrong with himself.
To read your post was sad that there is another neurologist out there who doesn’t sound worthy of being employed by OUR nhs but mostly sad because of the impact this has had in you. I hope your back
Operation will be totally successful and that can put you back to having optimism.
Like many others have stated please use the Parkinson’s U.K. helpline they are excellent. I’d also suggest seeking help from your GP with depression and anxiety. These are part of Parkinson’s plus your added financial/general life worries are clearly impacting you, medication can help with this as can cognitive behaviour therapy. Many local authorities now offer self referral programmes like time to talk too.
One last thing research hospitals of excellence for the treatment of Parkinson’s, if you’re atall unhappy with who you now see ask to be referred.
All the very best I hope that things settle for you after the traumatic entry to the world of Parkinson’s. Use the forum they’re a great bunch.

@cruisecontroller it was one of his colleagues in RD&E. Horrible man. I am now at Musgrove with the wonderful Dr Kassim.

@Plus1 i am on the northern edge of Dartmoor. Stunning area that helps keep us sane!!

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Hi @SteveinDevon So pleased you’ve got sorted and are happy with your Neurologist at Musgrove, Dr Harrower is Australian and was trained at Addenbrookes, Cambridge and is familiar with Deep Brain Stimulation, i’m under him for the Parkinsons side. I am also under Southmead Hospital at Bristol for DBS check ups and battery changes. I/we are located in Dawlish, we have a,“horrible view,” looking out over Lyme Bay !! LOL Where we are we’ve seen the comings and goings of the Cruise Liners.


Hi @cruisecontroller. I spent 9 years at sea with ‘horrible’ views!! Seriously though, I wouldn’t have wanted to face this journey during a pandemic whilst living in a high rise flat somewhere. I think the biggest issue for me is that although I have done a lot of charity and volunteering work, I am useless at accepting help from others. My wife sat me down recently and said I need to admit to myself that whatever the diagnosis, I am ill. So I have begun the process of reaching out and opening up to others. It’s beginning to help because I can read through the topics and see that so many others have had/are having a similar journey. I have been in denial that something is wrong. Now I just need to learn that some simple changes can improve things and hopefully soon I will get that eureka moment in the diagnosis and start getting treatment.


That, SteveinDevon, is one of the bravest posts I’ve read in a long while. It is no small thing to admit you have been in denial - it’s not uncommon either - but to come out and say so on the forum is a big deal. Referring back to my earlier post this could, and I think should be seen as the first step in finding your own path to living with old Parkie. I do hope so.


Hi Stevie,
My husband was diagnosed at 41 and he’s 60 this year and honestly I don’t think he dealt with it for the first 20 years…and I still wonder if he has ever 100% dealt with it!
What you are feeling is totally normal and totally understandable.
My husband was a gym rat when we met, ex army, always on the go and I think he thought he could just keep everything the same and it would just go away.
The hardest part in his journey has been accepting that he has an illness and that his life will change ( That’s a big thing to get your head round!)
Always remember you are still you, no matter what. Life may have to change but you are still the author of your own book and as long as you have a good supportive network of people around you,( and it sounds like you do) trust me you will work through everything - just give yourself some time.


@Beth13 @Tot @Lemon @nikobins @Plus1 @cruisecontroller thank you so much for your kind replies and comments. Like I said, I have been in denial for so long. The reality is that I haven’t been right since running the London marathon in 2012. Noticed various slight and subtle changes. Things like weakening grip, fatigue, IBS and bladder issues, stiff facial muscles. I started having niggling injuries playing football and struggled at work with the physical tasks and delegated more and more. I kept dismissing it as age related.
Then a career change because I couldn’t cope managing a country estate any longer. I now work as an environmental technician in a team of scientists but after my car accident went rapidly down hill. My boss noticed I was struggling but I was trying to push through. He noticed my hands were always white and I struggled with dexterity. Then the spasms started and I struggled to drive. I was then told to take some time off.
My NHS experience was awful. Went from broken wrist to Multiple Sclerosis in a few days. They didn’t have a clue. Private ruled that out and suggested Parkinson’s and spinal issues. Ran out of cash so back to NHS to be told, and I quote ‘there is nothing wrong with you, it’s all in your mind’!
Meanwhile work arranged for me to work when I could from home on full pay. I can’t praise them enough for that.
The second opinion experience was awful, same guy, same/worse attitude. I won’t name him because I may lodge a complaint. Things are finally moving with my new team but I have a fair journey to see them. I had always had the attitude of they will find out what’s going on, give me a pill and I will be ok. I now know I was wrong and facing that is tough.
3 weeks ago my world was turned upside down after my neurologist sent me a copy of her letter to my GP. It said ‘I agree with the opinion that Mr Watkins has Parkinson’s’. This was when I started to face up to the reality that i am not going to suddenly get better.
I am a 50 year old married father of an 18 and 16 year old. Always thought I was invincible and always been the one that people relied on and turned to. After having days where I literally would be in tears and hide myself away, I now know that’s not the way to face this.


Welcome to the club no-one would choose to join but gives you a whole new perspective on the world. It will change things but that is not always the awful thing it might seem. You find out a lot about yourself when you can’t take everyday things for granted and that is a powerful teacher. Use that knowledge wisely and you’ll do ok.


50 is young to have to reset how you expected your future to look.

Though it seems (to me) that coming to terms with (/acceptance of a situation when) things are changing permanently in an unexpected direction, is important to keeping mentally healthy - which has knock-on effects with physical health.

One of my (adult) children works in a medical field and was able to tell me straight away that a particular feature of my condition (which I won’t share) means that I won’t recover the use of my hand. I found it helpful to face this head-on.

I guess there’s enviably a grieving process for the loss of an anticipated future. Although the future could have been shaped by any number of other factors.

Lemon mentioned the word I wanted…Grieving. In an odd sort of way it is a grieving process. You spend your life planning this & that and seeing a path and then something comes along and just pulls the rug out from under you and you feel like your a rabbit caught in headlights!

Your journey with all of this has been far more difficult than it needed to be and that is down to poor understanding STILL!!!

I still come across “medical professionals” who I end up saying to them "No, that’s not right, or no its because of x,y & z & it does make you wonder how some of these so called professionals even get their qualifications!

BUT for every bad one, there are some outright amazing ones too!

My hubbies 1st neuro, nice enough but very old school, didn’t want to change anything just keep popping those pills and that’s all your gunna get type of attitude - I got fed up because hubby was so young so we voted with our feet ( this Neuro was a private Neuro!!! scary)

Went to the QE in Birmingham - 2nd Neuro a lot better than the first but really messed up when he gave my husband a drug ( the drug was fine-Im not mentioning it because the % of people this happens to is so small - we were the unlucky ones) but anyway, gave him this drug and didnt tell us the implications or some of the nasty side effects such as Impulse Control Disorder and had 4 years of hell.

Through all of this we had the best GP on the planet and he referred us to our current Neurologist.

Talk about a breath of fresh air! she’s younger and is willing to try different options, she doesn’t allow things to go stagnant… in 3 months hubby had all his meds sorted, he was taken of THE drug, his synthetic dopamine has almost halved and he is no longer suffering with depression he is the same now as he was wen we met over 20 years ago.

My point is, you don’t ever have to settle. If it doesn’t feel right, don’t suffer in silence, this is your life and you have the right to make it the best it can be no matter the circumstances.

I know it feels like a game changer having a diagnosis like this, I remember the day hubby was diagnosed but its not a death sentence…its something that has a lot of medical treatments, a lot of amazing people who have so much knowledge and will help you with literally anything - so remember you are never on your own - this forum became my lifeline, because while the neurologists and GPs and PD nurses etc etc are all great and qualified its the people who suffer this disease everyday who understand exactly what you are going through.

We get it… so do what you need to - shout, cry, beat the crap out of punch bag for ten minutes - grieve and give yourself TIME to do this…then rewrite the next few chapters of your life, because its not over, its going to be different, but its by no means over x

Sending you and your family the biggest support hug!


@SteveinDevon PALS is the body you need to complain to at RDE, every hospital has one. So pleased you took the chance on this forum as you’re among people who understand what you’re going through and we will be here to support you when ever you needs us.


Three things. First, l have PD and so know exactly how you feel. Secondly be wary of back surgery. Before you do, read the book by John Sarno called ‘Heaing Back Pain’. Thirdly, it is important that your wife and children know how you’re feeling so they are prepared for and understand your mood swings.

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