I'm new


#1
I've been recently dx with PD. When I got the news after 2 MRI's I suppose I was relieved that it wasn't brain tumour or shrinkage of cerebellum (previously guessed). Then I spent a long time reading up on it trying to find relief without taking the medication - previous bad experience with medication. I guess it's all about management and quality of life. I'm encouraged by some of the posts on the forum and hope to share experiences with other PD patients.

#2
hiya woodman welcome to puk forum,im ali,been dx 11 half years,im 43[::smile,its hard when it comes down to medication woodman,i think its a personal choice when first dx,i went on meds soon as i was dx,put on stavelo,im now on sinemet and mirpexon.you say you had bad experice with meds,are you able to say at all wot happined?but it ok if you dont wont to say:smile:there is good surport on here woodman,and friendly members:smile:some community members arnt on meds either,and belive there is no need for them,i find that hard to belive personally,but thats just me,i could not imagine me with out meds,im real bad when there wearin off for next dose:rolling_eyes:

#3
Hello Woodman,

Welcome to the forum, you will find a lot of people with helpful information and shared experiences on here. You have the right attitude in thinking it is all about management and quality of life, good management makes a huge amount of difference to not just you but also the rest of your family.
I wish you well in this new path life has taken you.
best wishes
vivian

#4
Hi I can see 2 of my fave pwp have responded. I can only endorse what they say. When I joined I was in a dark place but my parky friends have enriched my life and I see things from a more positive angle, Dont be shy to share everything with us because many times this will answer questions for us too, Looking forward to sharing many posts.

love neenagxxx

#5
Hello Woodman

Lovely name... I imagine you in a check shirt and old jeans surrounded by rustling trees, sitting on a log and whittling spoons.

My husband is the pwp in our family and has not tried the hydration therapy, tho we have read the book. I'd be interested to keep hearing how you get on with it. He is however keeping off the meds and doing qi gung a la Howard Schifke (well weird but hey worth a try) and having his feet held (by me.. also a bit weird you may think).

He is almost up to a year since dx and the only thing that has got worse is his right hand tremor. (This however he hates with a passion) When he went back to see his neuro last month he expected to be told off for not taking the ropinerole he was prescribed but instead he said... well if it's not effecting your quality of life too much its probably good to stay off the meds as they can be a nuisance while they are being tweaked, come back in a year. So we carry on.

#6
Thanks for your messages. It's good to know I'm not alone and there are so many with lots of experience to share.

I had a tooth infection that never went away and was on Amoxicilin a lot for over a year. After 2 oral surgeries, I now had the tooth removed but the drugs messed up my system - dehydrated, running tummy, just unwell. Since then, I try to avoid taking anything if I can. However, I'm starting to feel unwell again - light head. I started taking Rasagiline last week and am feeling a bit better with little side effects so far. I'm meant to take Repinerole as well; I suppose if I feel worse, I'll have to start taking it; unless I find something else that will give more some relief.

Parkwife, I do Tai Chi and some Qi Gong exercises and will look up the one your husband does. I'll let you know about the Aqua Hydration if I take it. Please let me know how well the Tui Na works - I've read through JJ Walton-Hatlock's book and am trying it myself now and then (I'm open-minded and would give most things a try). I've had one session of acupuncture but the improvement only lasted 40 minutes.

Luckily, I've been doing Alexander Technique for 10 years. It is really coming in handy. I've been told Pilates and Yoga are the other things that might help. There are only so many hours in a day. I'm trying to keep working as well.