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 Medication not working (as it does for others), a Parkinson’s specialist who resigned last year and has not been replaced by the hospital in question, a Parkinson’s nurse who rings up once in a blue moon and a local GP who ‘doesn’t want to interfere’???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?
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.
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
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.
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,
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
Hi hippy
Hello again, you don’t seem to visit very much, I was the same in the beginning, I suppose it’s was like burying my head in the sand, if I don’t admit to having PD, it won’t be there. But now I have a look around the forum most days, it seems to help when you share your life.we all could be better, but for a lot of the time we could be worse.hope today finds you in a better place
Rosie / Sue xxx
Hi Rosie / Sue
I tend not to post much but i do visit regularly (not signing in). I could moan all day but it won’t change anything, I’m still finding it hard (after 2 yrs +) to accept that things that used to be second nature, are now challenging …grrrrrrr.
I had a good day last Saturday but the following four days have been hard going again.Fingers crossed for improvement soon, thanks for your replies and good wshes.
H Xxxx
Hi Hippy
Im Keith im 52 yrs old today yes its my birthday
The way you felt and still do is the same as i did at the start , trust is a hard thing to come across if your not looking , if you dont go looking you wont find it
PD is a demom that eats away what is good in you , it trys to destroy your personality
it trys to take everything you are
Im NOT saying i understand how you feel i wouldnt insult you in that way
i lost alot of what i thought were mates / friends when i told them and i never left my house for almost 3 months except doctors or hospital appointments ive missed wedding , birthday parties
i made excuses for people not to come round
i became my own worst enemy
my family walked around on egg shells fearing to say the wrong thing at the wrong time and id explode like a bomb
ive said lots of horrible terrible things ALL of which i regret more than they will ever know
but they stood by me also the friends who stood by me and i avoided
the thing that angered me most was others telling me they were so sorry
pity and sympathy isnt what i wanted , and still dont
and those close to me and know how i feel do not give me either
i like it when others laugh with me about my PD and a little piss taking works wonders
with those close to you
yes there are things i cant do now but now it doesnt stop me trying though
it can take twice as long to do something sometimes but i still do it
what i could walk in 5 minutes now can take 10 or 15 minutes but so what and that inclueds the falling over arse over tit
this forum and the many friends ive made but never met have helped me and they CAN HELP you
but only if you want them / US to
believe me i have my bad moments but they are just moments when they used to be bad days
im not a doctor , i dont have a cure to make us better , but now i make myself a better person because of my PD
its not the case of being told to man up , its a case of being the man / friend you want to be
everyday can only be a challenge if you let it
i try and fail most days but it still doesnt stop me trying
things i may have failed yesterday are now my todays successes
I HOPE I HAVENT UPSET OR OFFENDED YOU with what ive said
WE are all in this TOGETHER
I would be HONOURED to class you as a new FRIEND
who will not be afraid to say what you think
as i pretty THICK SKINED
take care my friend
keith
Your opening sentences have brought tears to my eyes, wow I have no words apart from my heart goes
Out to you, i hope that they tell you soon, and that you get good news too, but please keep us posted, you are so brave.
Keith …belated birthday wishes my friend,hope the hangover wasn’t too bad!
Raz … sorry,didn’t want to have anyone in tears, you have to laugh or else you cry (there’s a song in there somewhere )
Hi all
At last i got last Nerology appointment for November 26th
Another 4 months
Sorry but i called my GP and Boy did i lose it
Held absolutley nothing back
Guess what they called me about 30 minutes later and now i have a quicker appointment
Its at a diffrent hospital 2 months quicker , only thing is the appointment is the same day as my 25th wedding anniversary and im taking it
I would have had the party by then
hope you had a lovely day with your family xx sheffy
)