I've seen at least two documentaries about PD in its later stages and all are dramatic and give the worst case scenario ie involuntary movements not controlled by medication. Really scary and depressing. I know the media always go for the extreme but does everyone virtually fall apart?
Hello MARYOWEN, I don't believe anyone could answer your question honestly because we are not all the same and anyone living with any disease are given the worst case scenario to make them aware of what could happen not what will happen. I am sorry I can't give you a better answer than this.
Wishing you well
I've met people who had PD for over 20 years and they hadn't fallen apart: one who had PD for 24 years was rather slow, fell from time to time, but still got out and about with help from a carer, and attended exercise classes.
I'm into my 34th year with PD and I had DBS surgery five years ago..ive plenty of living to do before I intend falling apart!
MATT, that is just wonderful news to hear thank you for posting that, it will give many members a boost.
The rate of change with pd is very important.If it takes 30 years to reach stage V of PD then almost all of us will keeled over from something else by then.
I personally am very hopeful that treatment will be available before very long to slow down the rate of change in pd. The Nedd4 story on the front page for example shows how researchers are narrowing in on alpha-synuclien as a key part of the cause of cell loss. So with a bit of luck, fingers crossed, you might very well not suffer the latter stages of pd. In the mean time, dwelling on distant possibilities ruins what you have now - live for today.
Living for today and not allowing thoughts about my future with PD (of course anything else could come along too)is hard some days.
But as Turnip suggests - most of us might not ever see stage V.
I turn 30 next month and I wonder so much about what lies ahead, like anyone.
Apart from anything else that might or might not come along, apart from scientific advances, I see my next 30+ years of life with PD as a defite fixture. Its that which scares me the most! - what will I be like?
But like anyone, it is the unknown!
thank you matt that does give me great hope i was diagnosed 8yrs ago and seem to be taking another dip had one last year could not get the meds right, how do you cope after 34 yrs you are an inspiration.sue.
I just wanted to endorse what Lilly and others are saying
Its great that your are doing so well and giving all of us hope for the future
Its a big taboo to talk about the years to come for family and friends
I was dx last year age 47 and stopped feeling sorry for myself after reading other posts
I am just living life for today and xxxx the future
I dont know what the v stage of pd is but can imagine after visiting pd clinic
Thanks for your comments of support....I guess everyone deals differently...I am very lucky in many respects as ive grown up with PD it hasnt suddenly arrived so I dont really remember being any different so I guess that helps ! I am also extremely positive by nature ....if there is something I want to go to or do I think of ways I can achieve it and dont dwell on 'what ifs'. i deal with them as and when . I have just received some really tremendous news too!!!
I have been granted accreditation by the International Olympic Committee to photograph at the football at London 2012 .
A dream come true!!!
Hi Matt, what wonderful news, congratulations and the best of luck.
Congratulations Matt - that is amazing!
Thanks so much Glenclass and Summerskye (what a wonderful name btw!! ) makes me smile! There's nothing like positive news to help with PD..even though I'll be so nervous its untrue!