New forum member


#1
I've been diagnosed this month after confirmation from an MRI and DAT scan. Would be interested to hear from others that have early-onset. My medication isn't sorted out yet. I'm seeing the Neurology Consultant in a couple of weeks where it will hopefully get sorted out. In the meantime I'm on Pramipexole. I'm paranoid about what other people think about my movement and my shakey leg. I'm hoping the correct medication will sort this out. I don't sleep well, so occasionally use Nytol. I've never liked popping pills, even something for a headache, so I don't take it every night. The diagnosis is still new to me and I'm not back to work yet. Please let me know how you're all getting on out there and any advice would be appreciated.

#2
Hi kf73,

Welcome to the forum :smile:I was 48 when diagnosed 17 months ago and like you hated popping pills even for a headache! so reluctantly i started on VERY LOW dose of Sinemet 1 x 2.5mg (apparently innefective dose?) and built to 3 x a day then went back down to 1 - then i decided i'd rather be on a DA rather than Levodopa (after much sole searching and debate/advice from others) and am only taking 1 x 2mg Requip XL a day (still apparently innefective dose?) and i'm ok for the time being? No doubt i'll upp meds when i feel the need.
My advice to you is ask as many questions as you can as in the beginning (even now still) there are so many different drugs available that it's mind bogling :fearful:and the biggest learning curve for me is that everyone's symptoms/tollerance to meds is different, so write things down to take to neuro, get his advice, take it away and THINK ABOUT, re-ask new questions that will come to light, then make your own guided decission!!:rolling_eyes:
It has been my experience that my doctor, pd nurse and neuro have wanted to start me on higher dosages of meds for symptoms that i'm ok with (for the moment) so my advice would be to start low, give it reasonable amount of time to work, then upp them IF/When needed. Easier said than done i know but the key is not to panic!(or at least try not too!) Work out whats right for you and makes you feel better about yourself i guess is key.
Best of luck

Diane

#3
Hi kf73
Like Diane i was diagnosed aged 48yrs and have been coping with the condition for the last 4-1/2 years, as diane has said each persons disease is individual I have had many problems with symptoms and have had many changes in medication but I am awkward i have been sensitive to nearly all the drugs :confused: I have still worked effectively for 25-30 hours in a professional job. My advice is ask as many questions that you can think of and if you get stuck ask us on this site you will find many of us will answer you. Don"t let your disease control your life stick it in a corner and when it comes out kick it back in HEE HEE there will be a young persons forum for you contact Parkinson"s UK and join they will send you research information and a magazine with up and coming events find your local forum even if the members are a tad older they can be fun and you can dip in and out of the meetings, Never Never feel you are alone if you need a crutch you will get one here . Now that we have got the serious things said if you need extra cash you can get a job as a cocktail waiter but do not offer to serve coffee or tea people expect a full cup (Shakey, Shakey) have you a partner ? children? a rubber Ducky yah yah yah, ok I have lost the plot but most of us have. keep in touch

#4
Welcome Kf37,

You have been given some very good advice, so I am just here to say hello and to let you know that my husband was diagnosed at your age and is now almost 69 years old. It is a up and down road but you can make it work for you better if you don't let it control you and make you angry. You have my very best wishes in this different path in life, just keep busy, positive and chat on the forum all you want and don't forget it is your body, so question all you want. We have made many very good friends over the years in this parky family and I am sur you will too.
best wishes
vivian

#5
Thank you for your responses. I'm sure the forum will prove to be a lifeline in the future. Amazingly I feel like I'm in a good place already about the diagnosis. I wish I was more optimistic about the possibility of a cure, however I am sure things will improve for those of us with PD with medicine improving all the time. My next steps are to have my next appointment with my Neuro Consultant at the hospital, sort out my medication, and get as much normality back into my life as possible, such as going back to work. Thanks for your advice. :wink:

#6
I was diagnosed at 45 and am now 52.

Coping with Parkinsons can be difficult but you really do have to remain positive,and dont let it get you down. It can be a very dehabilitating disease which affects us all differently. I still work full time in a very demanding job.

My symptoms started slowly, but I am now finding my toes are clawing badly and I am getting painful cramps, but I am coping. I do get very frustrated with it and wonder what the future holds, but I try to lead as normal a life as possible, whilst also giving myself time to rest.

Keep your chin up and fight back. Dont let it get to you - just coming on this forum tonight has helped, knowing that I am not alone.

#7
Hi

I am 45 and was DX'd in May. I have only just started on Ropinirole (2 mg x 3 times) so I cant add much more to your medication advice. However, what I have found useful in the last few months is attending my local Working Age PD group - its been useful to talk to other youngish PDers. I am sure PUK will help you find your nearest group.

Phil B