Research


#1

Hello,

I'm currently working alongside Parkinson's Equip, helping to raise money and awareness for the work that they do. I am part of a team putting together a publication, full of art an poerty, to sell at an event that I am holding in Manchester in March.

I was hoping that some of you would be able to help me with research to inform my work. I have been asked to focus on symptoms, and was wondering f some of you would be able to tell me your emotions towards your symptoms? I of course don't mean to cause any offence or upset, so if you don't feel comfortable talking with me then that is fine. It is just to help inform my visual response, for the publication.

Please respond ASAP as am keen to get stuck in. Also feel free to ask any questions about the work that we are doing with Parkinson's Equip.

Thank you for your time,

Holly


#2

Limited/Awkward/Clumsy motor skills - causes me immense frustration

Pains and cramps - anger at the "why me" (self pity if you like)

The thought of becomming, at some point, totally dependant on others is something I still can't grasp, and is really upsetting. There are things your partner, and heaven forbid your children, should never have to do for you.... shudder even typing it.

If you'd like to discuss, you'll need to post some direct contact details, otherwise, I hope these tiny snippets are of some use.


#3

The heaviest number I suffered from, pre-dx, was a feeling of "what's the point of having me?" I don't that was self-pity - a total feeling of uselesness.

The worst post-dx is probably rage - beyond frustration and all directed inwardly. My langauge was appalling, I had no tolerance of myself, I upset my partner. I knew I was behaving badly, I'm tell yself t osnap out of it/calm down/ walk away from potential (verbal) fights, but rarely t oany good.

The most extraordinary is seeing the change in myself since I added levodopa - no more violence, rage, bad feelings. I even crack jokes (very very bad puns) agian. I didn't really notice how bad I'd got till I got better. In turn that makes me scared: apparently I'm not a free agent, I am a collection of chemical imbalances that are manipulatable by the contents of a pharmacy cupboard and I have no say in the matter. (So where is "I" in all of this? And they call PD a "movement disorder")

That the sort of thing Holly?

Very best

Semele

 


#4

Could you elabotate on what  exactly PARKINSONS REQIP, is??

I know of Requip as one of the many  drugs that my OH takes for his condition.

Is this research and fundraising OK'd by PUK? If so, how much, or what %, of the funds raised will be  directly be sent to PUK???

 

Thanks


#5

Hi Holly, 

Thanks so much for taking the time to post in our forum I do hope you find it useful. It is great to hear that you are so committed to raising funds and awareness to help support people living with Parkinson’s.

It would be great to know a little bit more about Parkinson’s Equip as it looks like quite a new venture. Have they been in touch with Parkinson’s UK previously?

Also with regards to your upcoming event, will this be purely to raise funds and awareness for Parkinson’s Equip or will it be partly in aid of Parkinson’s UK? If so do let us know, as we can offer you fundraising support. 

Best wishes, 

Sophie


#6

http://parkinsonsequip.org.uk/parkinsonsequip/index.php

It seems this is a new charity to enable PWP to engage in sport and arts activities.

Holly, you need to give more info on the charity's work to gain interest and contributions.

good luck!

GG