Hi. I was diagnosed with early PD last week following a DAT scan. I have constant tremor and dystonia in my left leg and occasionally in my left arm. Before I was diagnosed I was feeling anxious and not motivated. I put this down to a stressful house move but I am still feeling nervous and am finding it hard to motivate myself. This time last year I had just finished an OE course, was working part time and exercising three times a week! Since May I just do the basic chores. Is this what they mean by non motor symptom and do you have them in the early stages?
I too was recently diagnosed with early onset after a DATSCAN. I haven’t been able to work since January- the tremor was just too bad. I’ve worked all my life so found this a difficult concept. I even tried to do basic type jobs but found that my symptoms were worse, and the anxiety was awful because of this. Absolutely no get-up-and-go. I lost my mojo on lots of levels. Eventually, I gave in and went with the flow, until I had a diagnosis. This mostly involved being home-based with no responsibilities. I still am.
Have you started meds yet? I’ve found that they seem to be helping in my movement which makes me happier to move about and try to do more etc.
Hang in there. It’s early days, have faith that you’ll regain that motivated, if not determined, feeling once again!
I have an appointment next week but dont know if I want to take the medications, there seems to be so many side effects. My tremor isn’t too bad yet but it is painful and the dystonia in my foot is very uncomfortable. What medication are you on and has it helped your mojo?
I am about to start another course next week and not sure I can be bothered.
I was diagnosed in June this year, although always in the back of my mind a complete shock. I have a right sided tremor in my left hand, foot and my jaw. I was more upset by the jaw, vanity I know but its the first place people look. But the I thought their problem not mine.
I am lucky to still be working although some-days it takes all my strength to get there never mind make it through the day. My employers have been great and I will be going down to five mornings after half term.
Like you I have had doubts about the drugs and am currently not taking them. I am not saying never as who knows?
I have found getting out for a walk and the gym a couple of times a week helps, as tiring as it is and sometimes not feeling like it, I know it makes me feel so much better. I also have a husband who kicks my backside!
Do you have any support groups in your area, some are really good. Who else understands better what you are going through than a fellow PD sufferer?
I hope things get better for you and you find your mojo again!
Take care and always here if you need a chat.
That’s fair enough. I have to say, my tremor and other symptoms especially my stiffness were bad enough, so when I got the diagnosis I wasn’t hesitant in starting on meds. However, my age (40) did make me question the dosage as I don’t want my body to get used to the meds to the point where they don’t work effectively any more… I’ve got a lot of years in front of me, so I need the meds to last me a while!! I’m on Madopar, and I’m a few weeks in now…felt a bit nauseous to start with but this passed…definitely made a difference… movement better and I feel like a little spark has reignited…
But it’s very different for all PD peeps, so you must do exactly what you feel you need to do.
Keep active and surround yourself with positive, supportive people. Be kind to yourself too
I was diagnosed with early onset PD just over 10 years ago at the age of 41, two years after my first symptoms developed.
The motor functions of the condition are well documented and recognised. For me the biggest issue was the non motor functions. I was finding that’s I was losing my motivation, didn’t want to do what I had previously enjoyed.
Anxiety became part of my life. I felt sad ithat old me was gradually being lost. It took me time to come to terms with my diagnosis and the non motor symptoms were a bit real issue for me.
We do have control over how we tackle our Parkinson’s journey. You are probably in shock, feeling angry, in a lot of pain with dystonia which is horrendous. I have it too.
So in answer to your question yes these issues can start at the early stage of Parkinson’s but the good news is that there is very effective medication available to help.
If you read the side effects onevery medication none of us would take any form of, medication.It’s all about the benefit you get versus the side effect, which you may not get .Or you will and a more suitable medication will be found for you.
The medication will be carefully monitored as will your mood. Speak to your Consultamt about how you feel as apathy and anxiety can all be helped enormously with medication.
Diet and exercise are so so important when you have Parkinson’s. I’m my opinion as important as medication.
You nee help with the dystonia. which is a condition itself . Again I would speak to your Consultant about the action plan to deal with that. Botox can be used .
I find having my feet massaged when it starts very helpful. I also massage my own feet if family aren’t around .i also have a small hard rubber ball which I place on the floor and rub my foot over.
I hope the above is helpful l I wish you all the very best for the future.
Hope to start meds soon, but they have told me it is CBS now. Thank you for your comments, I am hanging in - even if it is on a thread
Thank yo for the information really helpful.