New Member


#1
Hi, My name is Simon, I am fifty years old and was diagnosed about one year ago. Still trying to come to terms with the reality of Parkinson's and how it is affecting me. I have a tremor in my left arm and increasing stiffness in my left leg, which is making walking harder. I find the toughest aspect of Parkinson's is the continual thinking about it and how this can wear you down. I have realised the importance of keeping positive and doing stuff with friends and family. Have also taken up playing the ukulele, which is great, as my arm stops shaking when I play. I take sinemet and ropinorole, but not sure how effective they are, as I don't seem to get much relief from symptons. How do you know if the meds are working as well as they should? Any advice would be welcome.

#2
hiya syd,welcome to the foum,im ali been dx for 11 years and im 42 years old.puk site is very surportive and can make good freinds.how long have u actually been on ur meds syd? everyone is different as im sure ur aware,and i guess it depends of how long they take to get in system ,or if those meds are corect for youself.:smile:

#3
I've been on meds for about a year. I saw the consultant last week, and he said that when you take sinemet, you should get relief from symptons after about half an hour, and this relief should be noticeable. I don't really get this and wonder how it is for other people?

#4
Im not on meds yet' 57 yrs old dx 52 yrs. Play guitar and whistle. I find doing stuff helps, as does a drink or 2 !!!!! Welcome to the forum

#5
Hi-The name is Kevin Shaker-As James Bond would say"This is my 2nd life".Only difference is now,as from 31/1/12.I am offically a Gentleman of Leisure"The Job Centre and I parted company,on said date.Still working out the finer details of the "Pay Off"-but when is done,I will inform you.
In the interim guys-Keep the Faith.

#6
Hi .Similar to Sy and hornets nest I am having difficulty in knowing if meds are actually helping .I don't have such a noticible tremor which was not always there but noticible at times.I too am about to retire from work which is a huge change in my life.Currently suffering real pain in my upper arm --had x ray and waiting for result --presumed it was connected to PD but according to consultant may not be -- I too feel all consumed by the diagnosis .

#7
Over the weekend, I tried doubling my Sinemet dose and felt a relief in the stiffness in my leg, so I think my dose isn't high enough, but the worry is that at only 50, I don't really want to keep upping the dosage because of side effects. My consultant is trying me on rasagaline, so I will see how that goes. With regard to PD being on my mind all the time...it is, but getting out and about , doing normal things like going to the pub, learning a new skill like the ukulele really has helped me. We are also buying a VW camper van which is being restored, so that we can get away here and there and plan some holidays.All stuff to look forward to.

#8
Glad you finding some relief :grin: you have to what feels right for you and your family I live with my tremor because I prefer that to higher dose da's as long as you can be relatively happy with outcome thats gotta be the goal. All the best.:sunglasses:

#9
Hi Syd..a friend got me a ukuele but i can only strum, my
fingers wont move on my left hand for the cords,
im also on sininet some times i feel better other times not, but i also dont want
to go on a higher dosage because of side efects, im 49.
and
so far i can live with it,
i suppose if i practice i might get a tune
out of my ukuele

#10
Hi Norrie, is it the Parkinsons that makes it difficult to move the fingers on your left hand? The easiest chords on the uke are C F and G . If you can learn those, there are loads of tunes you can play very slowly at first. Stand by me is a good song to start with. Google will find it for you. Thanks for your reply,

Simon

#11
Hi there everyone! I'm Chris, I've been dx for five years now and am still rebelling and sometimes unaccepting of my p.d. even though my meds have been upped and upped ! I am now on madopar normal release 125mg 2 on waking, 1 at 12 mid day, 1 at 4pm and 2at 8pm. 2 125 mg slow release at 10pm. I was started on Neupro transdermal patches for my bad restless leg syndrome, which can accompany p.d, so I've been told. I think it's time I accepted my disability eh?
I have joined the forum to keep in touch other folk like me and to keep my finger on the pulse,when it stops shakin! The reason for this is, when I went to collect my repeat prescription from the chemist last week I was told that my G.P. had stopped my patches!!!! (they were prescribed by my consultant 18 months ago, G.p. providing monthly repeats) I was told they were too expensive. My theory is, if it ain't broke don't fix it! Has anyone else had this kind of problem and if so what happened in your case? My issue was resolved when I saw my G.P. Today. He took one look at me and said," I can see you are quite disabled by the Parkinson's, perhaps we should continue the patches as you say they are working for you." !!! I heaved a sigh of relief, I hate too many fingers in the pie!
I also have other health probs, diabetes, under active thyroid, osteo arthritis. I have serious sight problems and have a 70% hearing loss

I'm sixty now and like many of you no longer working, as such, but my 14yr old Grand daughter lives with me, she has cerebral palsy but is mobile, she has major epilepsy about once a month but I have found ways of coping with her, by being well organised, well, I try!
My carers are my friend, and my daughter, they are with me one or other of them continuously, I wouldn't manage without them .

#12
Hi Syd
We have also got a vw campervan and love going away in it.
It is great because I get tired and I have bed nearby and can have a rest whenever I need it.
It is also cheap holidays. Campsite start at £5. Would recommend it to anyone who is reasonably mobile.
Mandybike.

PS Last year I did suggest a weekend get together in campers/caravans. Anyone interested?