Hi
Wanted to introduce myself, I’m Julie, was diagnosed in September 2017 with PD. Haven’t had a good experience with the Neurologist but am finally getting a new one. I’ve only just accepted it, I pushed through and kept going but since July have deteriorated with a lot of pain and muscle spasm on the right side, also I get weird feelings in my brain like electrical shocks. Does anyone else experience these symptoms?
Great to finally get the time to talk and get support in place as I’ve been signed off work.
I’ve tried many alternative therapies and watch what I eat but the stressful jobs going to have to go as I’m also experiencing fatigue. From what I’ve read PD is a very individual disease.
Look forward to finding out about others experiences.
Julieann, Hi and welcome to the Forum. Unfortunately I personally have not experienced what you’re going through. What I can recommend is for you to locate a Parkinsons Nurse in your area(your local GP Surgery should have contact details for one) who will be able to offer help and support and answer any questions you may have until you can get settled with a good Neurologist. As you have found out, we all have differing forms of the disease and also have different side effects plus we all have different coping measures to deal with it. My side effects are balance issues, walking like i’m drunk !! Memory loss but i’m not at the Gold Fish stage !! Slurred speech and my voice goes high pitched and wobbly when I get excited about something. I talked of coping measures and the best way to approach it is with a positive attitude, don’t get depressed at the fact you’ve got it, stare it down and rise above it. Each day, do the best you can and where possible don’t change your life style to accommodate it, be your normal self as much as you can. A member on here said not so long ago, you have Parkinsons, Parkinsons doesn’t have you !! On here you will make friends and you will get help from the members as well as the Moderators who very often point people in the right direction regarding their symptoms. All the best and enjoy the Forum, we are all here for one another, you will never feel alone on here and if we can we will give you as much support as you need.
Les
Hi Les, Thankyou for your reply, I totally get what you’re saying. I have good and bad days but it has totally changed my life, I’m having to give up work and rely on others for support more than I’d like to. It seems to take forever to get services in place. It’s going to take time to get used to this new version of me but it does help to talk on here. I did have a Parkinsons nurse but she left and they are waiting to replace her. I need to learn to pace myself which I’m not very good at. I’m glad I started talking to others on the forum.
Julieann
I haven’t experienced electric shocks myself, but on my travels with google I have come across the term in relation to SSRI withdrawal
I have put a link to some information in a separate thread in Symptoms category
That’s interesting as I did come off SSRIs.
Julieann
@Julieann, There’s always somebody around for a chat and helpful advice, that is what I like about this Forum. I was a lorry driver so you can appreciate where i’m coming from, my work was so varied as I delivered bricks mainly around the country and picked up other building products to deliver on my travels. Once diagnosed it meant that I could no longer operate heavy machinery and had to give up my HGV Licence, the only consolation in this is that I am still able to drive the car but on a three year restriction, which is a blessing. I went from being very active to adapting to a new way of life, I walk to town every day for the exercise and to get the paper mostly also I play both Outdoor and will soon start the Indoor game to take me over the Winter. Have a good weekend, take care.
Les
Hi Julieann my name is Danny i was diagnosed 2020 im 62 and my symptom s are balance, fatigue, tremors on both hands but mostly on left, im still working thankfully, i must admit the depression and Anxiety is a problem for me, sometimes i just want to stay in bed away from my wife and sons and im thinking what’s the point anymore, i know i should be positive and excercise but when i get home from work im just drained mentally & physically , i see a Neurologist every 6 months but every time i see him he does 90 seconds of hand exercises asks he i can still look after myself , shave, shower ect then he says " you’re fine " also wants me to go to Tai Chi classes but i can just about get up for work in the mornings, sorry if its just me moaning but i feel talking on the forum with other sufferers helps
Take care
Dan
Hello Metaldad
What you are feeling is very common and if you want to moan here on the forum is a safe place to do that. No-one will judge you here for needing to do that because we’ve all been there at some time. Anxiety and depression are very common and you mention that when you get home from work you are mentally and physically drained. Many people with Parkinson’s carry on working post diagnosis, I did myself for almost three years. It was only when I left work (I had an unexpected opportunity to take voluntary redundancy) that I really realised how much effort work needed. The truth was getting through the working day took just about every bit of energy I could muster. I did virtually nothing outside of work that wasn’t essential. Evenings were spent trying to get rested for the next day and weekends just trying to get over the fatigue caused by the working week. It is much simpler to manage Parkinson’s when you don’t work when you can fit in into your life rather than have to fit it round your obligations and responsibilities of your job. I mention this only to make you aware because as I say I didn’t fully realise the price of continuing to work until I stopped. Also, you don’t say but do your employers know of your diagnosis and are you getting the support you need.? You don’t have to tell them but it may help you manage your work a bit better if they did
It sounds like you have a consultant who doesn’t take much interest in non motor issues but it is often these that people find hardest to manage. That doesn’t really help you but it means it is largely down to you to muddle through as best you can. Being aware that staying positive and exeercise can help is one thing but doing it is another. However I recently found a series of videos on YouTube for people with Parkinson’s which may help get you started on a bit of exercise - even if you don’t complete the whole thing doing a bit is better than nothing - maybe your wife (and children) could do it with you.
This is a link for a balance video
and this one for tremors agility and gait
Both symptoms you mentioned in your post.
They are American but I use these videos - and there is a huge selection - most days when I don’t have a formal training session I have tried other videos but don’t go back to most - they take ages to get going, have a lot of chat between exercises etc and basically just don’t ur oholf my attention… I don’t find that with these. Why not give them a go as I say even if you only do a part of it. It could be a first step to lifting your mood and perhaps start to feel a bit more positive.
I hope what I have written has helped a bit. I hope you will try the videos and if you do come back and let us know how you got on.
Best wishes
Tot