Garry here, 54 years old. Diagnosed 10 years ago after my right arm just stopped swinging and started shaking.
Got on relatively well till 2020 but seriously declined after the “you know what” jabs and a dose of the Wuhan flu.
I have gone from self employed working rallies, festivals and markets and travelling all over the country in our (self built) campervan and running 3 classic cars plus being actively involved in motor sport to a housebound, energy-less, shaking mess. Can’t drive or work any more.
I have been on Madopar for the entire time and a variety of anti-depressents over the years (currently on Prozac) which some may describe as “happy pills”, I would describe them as “flat and emotionless” pills as I just don’t feel anything any more.
GP is useless, Its virtually impossible to get a Neurologist appointment more than once every two years.
Most of my family have done with me, long term partner has had enough of me. I am just a millstone round here neck now whom she has to go to work and pay to keep now as I have been denied all benefits (made the mistake of working hard, buying a house and saving for my “future” Ha ha). Sex life if over and I can’t go on holiday any more as I am in so much back and joint pain I can’t sit for long.
I had a whole year last year of “mental health treatment” which consisted of CBT and “talking therapies” with some newly qualified, straight out of Uni types who knew very little about life. Waste of time that was although what I did get out of it was an official diagnosis of previously un-investigated childhood autism on top of everything else.
I “look fine” to the majority of people and I regularly get helpful comments such as “go out”, have a holiday, Get a job etc. I can’t even stand long enough to prepare a meal any more!
Hey @Garry270 I’m so sorry mate… times like this I wish I was Morgan Freeman… He would have some worldly wisdom to offer!
Sounds like you fought hard so far, Go easy on yourself… The battles take their toll and it’s okay to run out of steam. What do you need? What recharges you?
On a side note, really impressed reading your post… Successful business, home, family, Motorsports, building a camper van… You did all that despite having Parkinson’s (even if you didn’t know it at the time) and autism? Kudos buddy!
I’m really sorry to hear your story. In some ways mine shadows yours but this is not about me and I really do feel for you. More than that I just don’t know what to say.
Hi Gary,
I believe neurological problems have increased a lot since the jabs. The neurologists are a lot busier these days. What can you do to help yourself , perhaps a spike protein detox protocol would help if the jab was the cause.
Have a look on YouTube at Dr Clarke videos, he runs a Parkinson’s and neurological rehabilitation center in USA. He has proven successfully to have improved pd and neurological patients substantially.
I believe his views on antidepressants and neurological conditions may give you cause for thought. He asses his patients using a adapted EEG and the improvement can be seen to start after about 30 days .
I think he is opening a new approach to neurological repair .
Thank you for reaching out. We’re sorry to hear you’re having a tough time, but please know you’re not alone in this.
Our helpline is available and we can put you in touch with one of our Parkinson’s nurses who can offer some advice and support. They will be able to advise what steps you can take with your healthcare professionals if this is something that you think would be beneficial to you. Our benefits advice team can also look into what support you may be entitled to so please do give us a call: 0808 800 0303.
Sending our best wishes to you.
The Parkinson’s UK Moderation Team
Hi Garry, really sorry to read about your current situation with PD. I was diagnosed in 2021 and the initial shock took me a while to come to terms with but here I am 4 years later plodding on as best I can. I have a very supportive wife which helps a great deal and I am able to function fairly normally. But I do have dark moments where I wallow in self pity and think the worst. I think you need to stay positive however hard it is and live in the present moment. Maybe you could join a support group and cultivate new friendships. You obviously possess a wide range of skills and creative flair which could be put to good use. And remember tomorrow is a new day with endless possibilities. Dr Clarke’s you tube video as recommended by Lar is definitely worth a look. Maybe you could go for a private appointment with a neurologist to see if your medications could be tweaked. I am also on Madopar but there are so many other alternatives which might help you. Don’t give in to despair. Reach out to anyone who could help you; hopefully your family will be more supportive and tomorrow will bring a ray of sunshine. Mind yourself, God bless!
Please know that there is a whole load of us out here that often feel this way.
l have a dream that there is a place somew here where you can just go and get a big fat hug from someone who does nt care whether you are shaking, dribbling, leaking or crying.
If it was nt for my carers i would be alone for hours. I need people to talk to or i would have given up years ago.
I dont k now how long you havd had PD or even if you’re reading this but it has been great talking to you tonight.
Yours sincerely, drop me a line. XOXO
Hi Gary,
What you describe — and very well, too — is not cool. I doubt my sympathy will do you much good but you certainly have it.
You’ve lost a lot and so much that you built with your own graft!
So: you’re a fighter, that much is plain. This wretched disease is huge and its ramifications are multiple. But I doubt even this octopus can beat you, however “down and out” you’re feeling.
CBT can be a bit of a joke, I know — but if it gives you a laugh, that’s a plus.
Do you like dogs? I can’t say I do…until I actually meet one. Then they are so unconditionally loving, it’s hard to resist them. I’m not suggesting you get one but perhaps an acquaintance has a friendly mutt you could make pals with. For all I know, there may be therapy dogs out there.
Small pleasures can be pretty good, especially when they’re for real, not commercial.
I’ve taken to examining plants, weeds, grasses, insects, a lot more closely than I used to. Quite fascinating and utterly indifferent to you — which can be quite therapeutic, in an odd sort of way.
Something “out there” will give you pleasure, however grudgingly you feel like acknowledging it! Look for the small, free stuff: no-one can take that from you.
My very best wishes, Mick1422