Where are the optimism?

[cheerspark]

Recently, I browsed some research papers in the net hoping to catch up with the new development on PD treatment. To my disappointment, all I can get to know are how disable we parkies will end up with. It's depressing enough. Where can I find the optimism to keep me on?

[shasha]

at least you have meds which help - with psp there is nothing at all

[fronya69 in reply to shasha]

what does psp stand 4 please????

[Hidden in reply to fronya69]

Progressive Supranuclear Palsy.

[fronya69 in reply to shasha]

Shasha-R there any psp support groups? If not try patients Like me, they do all kinds of illnesses. I'll check 4 u. byby, fronya

[fronya69 in reply to fronya69]

vjessv- Go 4 it! yes they do have support 4ur illness. Maybe ask them about clinical trials.ioo!

[shasha in reply to fronya69]

thankyou fronya69 there is the PSPA IN THE UK WHO ARE GREAT

[soup]

Hello Cheerspark, the optimism is out there but not necessarily residing with cures and treatments. They have their own timescale. Have you been able to get to a support group and socialised with people with Parkinson's? I never come away from the group without at least a good belly laugh. Where are you in the world?

[fronya69 in reply to soup]

Soup- U r a kind soul. Umade my day. thanx! fronya

[Hikoi]

journalofparkinsonsdisease....

Cheerspark not research exactly but this was in my inbox this morning and I found it very encouraging.

[Pheonixalight in reply to Hikoi]

Read.....journalofparkinsonsdise... Very inspired & inspiring people .

[plainbob in reply to Hikoi]

Hikoi, just read The Journal of Parkinson's Disease. My grateful thanks for highlighting this very positive site.

[Hikoi in reply to plainbob]

Phoenix and Bob glad you liked the article. This was in my in tray today and i found ot very encouraging too.

med.lu.se/bagadilico/news_a...

[honeycombe3]

Hi Sharon,

Glad to see you are still posting.

Cheerspark - you have this site where, believe it or not, we celebrate our small triumphs as well as supporting each other through the hard times. There are some things we can do for ourselves such as volunteer for trials or make lifestyle changes. There are polls on this site which can be accessed historically about issues of interest/concern to PwP giving a wider perspective. The poll around creativity was especially upbeat. My glass is half-full......how's yours?

[PatV]

my neuro is a research doc and he too is disappointed in the results of some very promising clinical trials. nevertheless we motor on. I was angry when people tried to encourage me when i was first dx. But then through my Buddhist practice, I decided I AM THE CURE!

[JohnPepper]

Hi Cheerspark. In this world, You only get out, what you put in. With Pd, if you only put pills in your mouth you will get out a temporary relief from certain symptoms, but you will aso get, or build-up, the side effects of that medication. A wise man once said, if you abdicate your control of Pd to medication and do nothing to help yourself, you will pay a heavy penalty, or words to that effect. The best thing you can do to help yourself is to take as little medication as possible and do as much exercise as possible. If you have not exercised for a long time then start off very gently, every second day. Walking is the best exercise, but any aerobic exercise is better than nothing at all. If you start walking as fast as you are abble, minus a bit, then you will be on the road to success. Every second week, increase it by five more minutes until you get to one hour. By then you should be able to walk for close on 4 miles or 6 kilometres. Don't be put off if that goal is not achieved, it is the one hour that is the most important, not the distance. Read my website about all the things you can do to hopefully reverse your Pd. reverseparkinsons.net. Good luck!

John

[Pete-1]

Cheerspark,

Hopefully that phase of PD will be years and years away yet. Probably get run over by a bus before then. Why not wait a while before things are that bad Anyway if your focus is too far towards the horizon you're more likely to trip over the stone directly in front of you.

There are some good things about having PD. Like meeting lots of new people. Also it is a very interesting ailment and don't forget PD is not terminal.

And to endorse what JohnPepper says the best thing for PD is exercise.

[cheerspark]

Dear All,

Thanks for all the responses. In here, I feel I am heard. Actually, I attended a talk from a local self help group last week for the very first time. All along, I was ambivalent about going to a self help group fearing of making me more upset afterwards. I was fine during the talk though I was tearful for a few brief moments. Anyway the talk was all about exercise, nothing really sentimental. I declined to be described as still at the stage of non acceptance. I embraced PD through my fights against it. However, along with my hard effort are my tears. Of course, your kind words & warm heart.