You've got Parkinson's


#1

Those words were issued to me two years ago now, the same year I lost my wife to cancer, the same year I lost my mother following a stroke … no idea why I was dealt this bad deal.

Hi everyone … hope you’re all getting along as best as can be in the circumstances.

One word sums up this awful disease as far as i’m concerned … “Frustrating”. Frustrating in that:
Once upon a time you could lead an ordinary life.
You want …but you just can’t now.
Dressing.
Washing.
Walking long distances.
…and many more things …all very frustrating all the time.

Then add into the equation, living alone, semi remotely, miles away from family. Medication not working (as it does for others), a Parkinson’s specialist who resigned last year and has not been replaced by the hospital in question, a Parkinson’s nurse who rings up once in a blue moon and a local GP who ‘doesn’t want to interfere’???

I don’t know about funds being needed (as they are) but an 'understanding’would be a great place to start perhaps. The following years look like they could be fun for all the wrong reasons … bring it on, but go easy on me eh? :sunglasses:


#2

Hi @Hippy,

A warm welcome to the forum.

Please accept my deepest condolences for the loss of you mother and wife. It sounds like you’ve been through a lot over the last few years and the loss of your loved ones in addition to your diagnoses could not have been easy for you.

I am confident that you’ll make a lot of new friends on the forum and will gain a lot of support from your fellow members. With regard to your location, you can find the right support and activities near you via service finder on the Parkinson’s UK website here. You can also contact out helpline service on 0808 800 0303 and speak to one of our trained advisers who can offer you further support as well as arrange for a Parkinson’s nurse to call you back within 24 hours.

Again, I’m sure you’ll receive a lot helpful advice from fellow members, however I do hope the information above has been useful to you.

Best wishes,
Reah


#3

Hi Reah, many thanks for your welcome and kind advice.

I have to say that, at this time, with my experiences to date, I have no confidence in receiving the help I would like with my Parkinson’s.
I feel that people don’t fully listen or appreciate what I tell them … or just pretend to understand and/or care.

My starting point is to find trust, understanding and belief … two years down the line and I’m still looking

Best wishes and thanks again,
:worried:


#4

Hi Hippy,
Reading your post, I wouldn’t dare to suggest an understanding of what you’ve been through. A diagnosis of PD is enough without having your support system taken away. You will certainly get listened to on the forum if that’s any good to you.
You need to get your meds sorted as im sure you know it takes constant tweaking. Your gp should redirect you to another specialist surely? Maybe it is a post code lottery.
The pduk helpline may just have some help for you.


#5

Hi Hippy.

Hope this finds you coping with your PD , probably not the correct word to use. …

Hopefully see you on here for a blether.

I have had PD for 5 years now and also rheumatoid arthritis

Take Care Babs x x x


#6

Hi @Hippy,

It’s truly sad that you feel this way and I appreciate the need to build trust again in light of all that you’ve been through.

Just know that our helpline service is here for you should ever you decide to use it.

Best wishes,
Reah


#7

Thanks for the replies everyone.

One small step at a time I guess (literally but no pun intended).

:persevere:


#8

hi hippy
just arrived at your page and read your comments I have had PD since 2010 and like you I had a lot of problems its hard I know but don’t let it grind you down, you are much better than PD, I myself tried kickboxing but this was not for me, then I tried TAI CHI I made new friends and go twice a week, also I have tried Chinese brush painting this helps me relax, I will let you into a little secret some times when painting I am so relaxed I nod off, you should see my painting its different, its hard I know but try and look after your self, try and find friends to help you, and keep in touch with this page, above all don’t let PD get you down,


#9

Hi mary
It’s comforting to ‘hear’ of sufferers, like yourself, who find peace, I’m genuinely pleased for you and hope that you continue to enjoy many more contented years.
Thank you for the positivity you portray, bless you.
Take care
Hippy x


#10

Hello Hippy, so wish I had a magic wand for us all. Hope your day is as good as it can be …love Rosie xxx