My name is Elaine and I was diagnosed in December at 48. I have reduced my hours at work as stressful job and find that stress makes my movement slower.
I am currently on low dose of madopar which seems to work but suffering from low mood and sometimes hard to sleep feel quite alone living with this disease.
Trying to be positive eat healthy and exercise helps but sometimes overwhelming as I am on my own with two sons and a responsible job.
Hi Elaine and welcome to the forum. On here we are a friendly bunch so feel free to broach any topic you wish and someone will give you an answer. Adopting a positive attitude is what I suggest to new members and always be prepared to make light of your condition. You need to be strong for your boys to prove to them that you won’t let this diagnosis beat you, a friend of mine on here has her own take on it and says, you may have Parkinsons but it doesn’t have you. You keep this in mind and you will go far.
I too am on Madopar taking 5 x 250mg a day plus I have a Deep Brain Stimulator fitted, this helps with the Parkinsons side of my tremor but doesn’t help with the Dystonic. If you haven’t already asked at your GP Surgery then do so about your nearest Parkinsons Nurse, these people are worth their weight in gold providing a valuable source of information. It is good to know that your employer seems to be aware of your condition by letting you reduce your hours, at least you’ve got a job !! I had to stop doing mine as I was a lorry driver and Parkinsons forbids you to operate heavy machinery, even though I felt I could still do the job but it was the paper work I couldn’t do, plus you have courses every so often and these involve a lot of writing. You certainly seem to have the right idea about eating healthily and doing exercise(something i’ve not done a lot of over the last 18 months but I have started !! LOL). Take care and stay safe, I usually pop in here a couple of times a week just to keep my finger on the pulse so to speak. Wishing you the very best.
Hello Blair and welcome to the forum. I am glad you felt able to post to the forum because although we can’t physically be with you, you are most certainly are not alone.
Parkinson’s can be challenging and frustrating to live with. It is hugely complex, affects everyone differently and is generally poorly understood. That’s the bad news. The good news is that you can have a good life with Old Parkie in tow but I’m thinking that at the moment when you’re feeling low and on your own that is not easy to see in relation to your own circumstances. It is my personal view that we each have to find our own way to have Parkinson’s in one’s life since although it isn’t the life anyone would choose and certainly didn’t see in one’s future, it is the card we have been dealt and by default is part of who we each are. There are many ways to view your Parkinson’s. Some people choose to see it as a battle, fighting it at every turn, some spend endless hours scouring all the research and reading everything looking for the cure, new medication or whatever. There is no right or wrong way only what works for you. For me that is to keep a positive mindset and I work hard to try and maintain that. It’s not easy or infallible, I have my moments when coping strategies let me down but it has kept me going for almost 12 years so I see no reason to change. All very well you might well be saying but it doesn’t help me. Well I can only tell you the sorts of things I do when I’m having a difficult to be positive day / time. Over time I’ve put together a sort of summary card of things which I look at when I need. This is useful because it is ready to go as it were. It reminds me I’ve been there before and survived and more to the point reminds me on days when that is hard to do, of things that have helped so I can choose what to do. I copy a bit of it here so you get an idea.
TODAY CAN BE A GOOD DAY
REMEMBER Parkinson’s is slow moving in most as is mine. That’s good. Today could be far far worse.
REMEMBER I am (Tot) first. I have Parkinson’s it doesn’t have me and it doesn’t have me today if I don’t let it.
REMEMBER I get stressed and anxious more easily than I used to that makes difficult days normal. I’m not sinking however much it feels like it.
Get some fresh air
Play upbeat music and move to the beat
Sing a happy song
Punch a pillow as hard as you can
Bend a trusted friend’s ear
The power of the written word
The time limit principle
I stress this is my way it may not suit you but perhaps it will give you a starting point to look at your situation differently.
Whatever else you may be, what you’re not is alone now you have all of us on the forum.
Thank you so much les for your quick reply. Nice to talk to someone with Parkinson’s, stay healthy and strong.
Thank you so much tot for your quick response will certainly try your points to get through the day.
You my love are not alone. I also have just joined the forum although have been on my journey for a number of years they think I started at 45 now I’m 61. I try to think of it like an adventure you never know what you will find next.
Although it may be hard at times try to stay positive it really will help you. I always think on a bad day that there is someone somewhere with something worse.
Sending a big hug over the wi fi
Thank you Karen I know what a journey we are all on have been really positive and fighting through it this year but just going through the depression stage not sure if side effect from madopar and now on antidepressants which are making me worse, seriously thinking of getting off meds and trying the mucana prurien not sure spelling correct anyone tried it and where do u order it from?