New to the forum


#1
Hi everybody, I've just joined the forum as I've recently been dx for PD, I'm a 56 year old lady who's world has been rocked by this news.
At the moment I've only got the tremors in my arm and occasionally in my leg, I'm still waiting to see my own GP but at the moment the hospital put me on Propranolol 3 times a day.
Having been looking at the posts in the forum for a few days now I can't help feeling confused and worried about all the different types of medication around.
I'm learning to cope with the tremors although it is so frustrating but life goes on, what I am wondering about is the need to take all this extra medication as I'm worried about some of the side effects.
The hospital were not very helpful at all and just calmly announced the fact that I had PD as if it was nothing more that a sore throat, I guess I just need to know that I'm not alone in all this, my husband is being very supportive but sometimes I just want to know 'why me'.
Sorry this is so long for a first post.

#2
Hi

Welcome to the forum, there are some lovely people here who will answer your questions and who have been where you are now.

I was Dx aged 52, nearly 2 years ago now, I remember walking around Marks and Spencer afterwards, in a daze with the words " you have Parkinson's Disease" going round and round in my head.

I thought it was the end of my life as I knew it, but I was wrong. 2 years on I am not much different, still working, driving etc. The drugs really help when you find the ones that work for you.

I know it is easy to say but try not to let it take over your life. You are the same person you were before the Dx.

Best wishes

Caroline

#3
Welcome beemer528
You have come to the finest place I know if you need reassurance that you are not alone. The time after diagnosis can be scary and upsetting for all concerned. I was diagnosed 8 years ago and I can remember the shock very clearly. There are people in this forum who can answer pretty much any question you can think of about Parkinson's.

You asked about medication. In very simple terms there are 3 groups of drugs that are commonly used for Parkinson's and all are concerned with increasing the supply of dopamine in the brain. The first type of drug slows down your brains re-absorption of dopamine, the second type boosts your own supply, the third type adds more dopamine as directly as it can. There is more detail about the drugs on the website
http://www.parkinsons.org.uk/about-parkinsons/treating-parkinsons/drugs.aspx

Any good neurologist will recommend the right drugs (which might be none) for you and will explain the possible side effects. There are lots of possible side effects but nobody gets them all.

It is worth finding out if there is a Parkinson's Nurse Specialist in your area as they can be very good. The Parkinson's UK helpline (no. at top of page) is staffed by superstars who can help with almost anything.

I hope that helps a little and that you find the forum as welcoming and supportive as I have done

Elegant Fowl

#4
Hi Beemer528, Welcome to the forum. I have had pd for well over 30 years and have only recently joined the forum,and I wish I had done so a long time ago. I know you will find everyone very helpful and very friendly too.

#5
Welcome to the forum, some great folk here and lots of advice.

#6
Hi there
Welcome to one of the best forums on the web.
Do not get dispirited over the wide choice of medicines and their side effects. I think it would be a strange pd sufferer who could say that they have never been confused by such things. Remember, as each medicine affects individuals in different ways, side affects do not always occur. Just take things as they come. What will be will be. Some hospital staff do seem remote and perhaps they are and always will be whatever the illness.
Best of luck for the future
Chunky

#7
Good luck with the operation - I think it's a really positive thing to do and a great attitude. My mum in law has had Parkinson's for 15 years and she still beats me at the crossword every week !

#8
Sorry I should have explained myself better - when I say i hope the operation goes well - I mean the military operation of trying to get your meds right! Don't get disheartened as its worth any dosage trial and error to find what works best for you. It's worth it and can make a big difference. Good luck x

#9
Hi everybody, thanks for all the replies you've given it has made me feel a lot better about my condition.

I'm still waiting to see my GP so as yet I've not started on any medication, I'll let you all know when that happens as no doubt I'll be in a minor panic again.

I've decided to let all the family know so there will be no unspoken questions about the tremors, but with that came all the "oh my friend had that" stuff, but one thing that I have heard is about caffeine, is it bad for me? good for me or what, is there any thing I should avoid?

Thanks again everybody and have a happy new year