I’ve just been diagnosed with Parkey and I’m lost in this world of medicine, doctors appointments (phone or face to face) apart from the removal of my tonsils when i was 6 & an operation when i was 42 which means my children wont be having any more brothers or sisters (I’m 63), I have had tremors for about 18 months but due to Covid just got on with it but other symptoms crept in & just before last Christmas went to my GP got an appointment with a consultant back in June, now on CoCareldopa Sinamet 3 times a day had a MRI scan last Friday (now there’s experience !!) I’ve notified DVLA & that’s it, my first appointment with a Parkey nurse is in December with next phone call with Movement disorder is next January, Where Now ? I’m having good days n bad days, mentally and physically the meds seem to be helping but I’m lost any advice would be great, thanks in advance to anybody who replies, Tony
Hi @tony8903 and welcome to our forum. I can only imagine how it feels to have been healthy your whole life and then get such a diagnosis. You’ll find the members here will all have stories to share to help you feel less alone and lost.
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Hi Tony, unsure where to start with a reply, but feel ready to be able to post, there is some wonderful advice on here and in my short time of being diagnosed Jan this year I would say take each day as it comes, try not to worry, easier said than done ,I appreciate this is hard but have to get on with it, I am working full time shattered like you say physically and emotionally and I tell myself it’s okay and not be too hard on yourself. My frustration at not being able to go at my 140mph like I used to sometimes gets to me, I have made adjustments to my working day, my routine, cooking and baking all of which I enjoy but I’m not going to be hard on myself if I can find an easier route - maybe I will buy pre-chopped carrots and grated cheese! I am and have always been a very practical person, so following starting meds I looked into okay what is in store for me? No answer there, so many variances between side effects of meds, how people react to them, how they help with some symptoms and then side effects - very daunting and worrying. On a practical level I started a diary, nothing too much but it helps me to keep track of any symptoms, how I sleep, reason for waking, mood level, diet and how my meds work - it wasn’t until after about nearly four months I was made aware of how it is absorbed into the body to release the magic chemical and consequently changed the timings of meds and what I eat before and after. I kept an eye on my weight as lost two stone and didn’t really have it to lose, all of these I then take to my neuro appointment and am able to discuss with him, it’s really helpful as the time of appointment I tend to forget and having the diary helps as a visual to recall well this is where I was 6 months ago and this is now, hope this makes sense. Do you think this could help you? On the DVLA issue, I informed them January and have this week had paperwork back to advise me going to a three year medical licence so i wouldn’t worry too much if you haven’t heard from them within six weeks! The other advice I would offer I have just completed the Parkinson’s First Steps programme you can find the details on here under the newly diagnosed section - really helped and this was delivered from people who have been through what we are going through. I hope your meds are helping, are you able to find a local support group or exercise class - not everyone’s cup of tea, I walk every day, I check in on the forum there is a creative corner, maybe have a look around on here, I was lost too for a while, but little steps, not a sprint, be kind to yourself, and am hoping that my rambles have offered you some support, I hope! Take care and don’t let yesterday take up too much of today
AnaElsa delighted you feel ready to post and an excellent job you’ve made of it too if I might say so.
Tony, I agree with AnaElsa take it steady, be kind to yourself and you will gradually find your way to live with old Parkie. Diaries are indeed useful and I too often suggest folk might want to consider this but I must admit they don’t suit me. I have tried several times but they just don’t suit me. The reason I mention this is to say Parkinson’s is as frequently said, very individual and the trick, art or skill depending on your preference is to find what suits and if one way doesn’t work try something else, or adapt something to suit. Good luck and keep going things do settle as AnaElsa is finding, with a bit of work and time to find what’s best for you
Good Morning Tony, we all come to terms with what we have been blessed with (for want of a better description) when some say you don’t want to be blessed with it! We all have our ways of with dealing with it too. If you are an outgoing person as I am, I took up joining a local Parkinsons group and have never looked back. The friendship, guidance and enthusiasm I have found from this group is awesome. I hope you can find one near to you. I found at first to be a little cautious when I joined, not wanting to get in insight into what I may end up looking like in advanced Parkinsons. I need not have worried, we seem to find this inner encouragement to battle on in life and try to better yourself. I actually joined the committee in the first year, and am still with them now. Take it in your stride, one day at a time and try not to dwell on things too much, which I must say will come on by sometimes, its all part of the battle.
There is only one thing I regret is not writing a diary, as Tot says it is not for everyone, but I think it is a very good way of keeping an update of everything for Neurologist, Parkinsons Nurse & GP appointments, in fact have talked my into starting one, better late than never!
All the best - sheffy
Thanks Janice for the advice it certainly seems like the start of a journey, Tony
AnaElsa thanks, wow what a post you must have been saving that one up, thanks for your help, the diary I will take up as well as most of what you have said, the chopped onions well maybe another day , take care n keep inspiring others, Tony
Thanks Tot, you’re a a busy person I’ve read several of your replies now all interesting and helpful thanks so much , Tony
Thank you Tony, it keeps me out of mischief but glad you found them helpful.
Sheffy hi thanks for replying right at this moment I’m maybe not up for a group meeting although I can see where people do get support from them, now the diary I can do it fits right in with my life, with the replies I’ve had I’m learning it’s a journey thanks for your help n stay safe, Tony
Thank you, this was my first post, I know how I felt when I asked similar questions when I started this rollercoaster ride, and both Tot and Sheffy were there to reply to me, I have and will say again Tot has given me some amazing advice and suggestions. Keep smiling
Seems like you are bright and cheerful about it all. I’m 62 and nearly 10 years dx.
The good news is Parkinsons doesn’t kill you. You have to learn to live with it though. There’s lots of advice aroundThe Parkinsons Community group on Facebook is good lots of advice again from people who have been through it.
Do the Parkinson research. I did and thought I would get every symptom. You don’t, everyone’s is slightly different and progresses at different speeds. I’m lucky mine is slow and well managed by drugs. I had a home visit from a Physio last week who I had met up with 2 years ago on a Parkinsons exercise course. She commented how well I’m doing. So it’s not all doom and gloom. They say keep exercising I do some but I’ve never been a keep fit type. I retired at 60. Only made possible by an independent financial advisor. He brought together my work pension funds into a SIPP. If you have any pension funds do take proper advice. Their costs are % based. So it seems expensive, but it’s taken from the fund so you don’t have to feel the pain of paying directly. I can honestly say it was the most important thing I’ve done. It removed my financial worries.
Keep strong get on Facebook, do the Parkinsons Uk sessions they are also a great help. Again they’ve been put together by people who have been through it.
Hope that helps
Everything helps at the moment so thanks, it’s turning into a full time job dealing with Parkey I may have to retire I’ve had some time off n now back at work n surprised how many people believe Parkinson’s is just about the tremor once again thanks for time, take care