Lack of support


#1
Hi Folks I was diagnosed in April this year though according to consultant I have had signs for 5 to 6 years. My question is except for this excellent site what support is out there? In my case it was yes itsPD take these pills see you in 3 months. No explanation no discussion just diagnosis and pills. Left wondering what I have to come and what is happening to me.

#2

Hi Steve,

Sorry to hear you've joined the 'club'. It takes a while to sink in and accept......took me over a year.

Like you, I was given the diagnosis and dismissed with no idea of what the future might hold. I had a friend who was diagnosed 2 years before me, so I went straight round to her house and burst into tears.

Everything I have found out about Parkinson's since, has been through scouring the Internet, reading research articles and this Forum. I'm afraid you have to ask questions and be prepared to fight for attention sometimes, depending on which hospital you attend.

I did suggest to my PD nurse, that an information pack would have been helpful, when first diagnosed, There are several people you can be referred to.....neuro-psychologist, neuro-physiotherapist, speech therapist, dietitian, as well as being informed of your nearest Parkinson's group meeting and also your Parkinson's Support Worker. The pack should contain all this info., with names and telephone numbers, at least. Even a mention of this website, would have been nice......instead, I stumbled on it accidentally!

Don't be afraid to ask any questions you like on here, or just have a moan. It's probably too soon to tell you to keep a sense of humour......but it certainly helps if you can!

All the best,  Twinks.


#3

 

Hi


your consultant should refer you to a PD nurse to help you in answering any questions and concerns you have over medication, diagnosis, or the illness itself, your gp should initially also be monitoring the medication as it is adjusted to suit you.

you should also have a support worker available to help you in matters of employment/benefits/household adaptation/mobility ect.

beyond that there may be local support groups, Being working age myself i am lucky to have had one set up locally. we have monthly meetings, social events, walks meals out ect.

When i was diagnosed all i had  was a little blue card directing me here.


#4
Thanks for your replies folks. Totally agree with your info pack idea Twins would be so helpful. Instead I was left shocked and confused. I have tried the local support group and I really don't mean this to be offensive but the members were considerably older than me and more advanced in their PD. It only served to frighten worry and shock me all the more, thinking is this me in a few years. All my info has come via Google and to be honest it frightens me, I'm used to my independence and doing things my way.

#5

I know what you mean about a local PD group.......mine was not for me either. Some, however sound very good from what people have said on here. It's pot luck really, just like getting a decent neurologist and PD nurse. I recently ditched mine and moved to another hospital, where the atmosphere is totally different. Don't give up on your independence and carry on doing things your way. Insist you get good care and don't take 'no' for an answer! What part of the country are you in......I'm in North Yorkshire.

Good luck.  Twinks.


#6

 

the group i go along too is specifically working age there's about 50 members at the moment.


#7

Sounds like a gud un, sea angler!


#8
Hi Twinks I'm in Cannock Staffordshire. Funny enough had my first PD nurse appointment come through today. 28th December not bad as diagnosed in April. Don't know who to recognise for this quote Don't let the buggers get you down.

#9

Hi ,Steve 

Agree with you that after diagnosis the support is shocking ! I was dx at 41 that was 5yrs ago. I am till working and cracking on with everything . I had small handwriting for about a year and could not rotate my wrist smoothly. After scans i was sent to see the consultant , I was asked to make a fist with my affected hand then open it fast and to try and do it as many times as I could .....I struggled to do this . Then he said I had PD!!! It hadn't even come into my head that I could have PD , I thought this was an older person disease(wrong!).Was then sent on my way with some sinamet and told to come back in a month.  Worst month of my life !!!

I think that there should be more support after initial diagnosis , if I knew then half of what what I know about PD now then maybe I wouldn't of worried as much. Just a call or visit from Parkinson's nurse would or done..

My tip for you mate is stay off the Internet apart from this site ,  there is a lot scare mongering rubbish out there that will not do you any good .

Also does your consultant specialise in PD? My first one didn't so I changed to one who did.

Stay positive ......you will get your head round it , it just takes time. 

 


#10

I had the same experience as far as neuro was concerned.  He did mention a name of someone who was apparently the PD Nurse who  didn't get to me for three months by which time I had sorted myself out.  This person twice forgot to refer me to physio to which I knew I was entitled althoug when I got to see them h that was a bit of a damp squib also.  I now have an excellent PD nurse as the neuro is still a man of exceedinly few words

.Fortunately I did know that there was a PD National Organisation and for £4 (still the same sub.I believe) I joined PD UK and received a bumper bundle of leaflets thick and thin.  I don't know whether they still do this. Otherwise fo their free to download  prize winning leaflets etc.  on everything you could possibly want info. , click on "support for you" at the top of this pageand then "publications"  


#11

My previous neurologist did not recognise either Parkinson's UK or my local Support Worker. He said he'd never heard of them. When I pointed out that they had both been a great help to me, his reply was, 'But they have nothing to do with the NHS do they?' and was very dismissive. In fact my PD Support Worker told me that she had been actively discouraged from having any input at this particular hospital. Other hospitals in her area, had welcomed her with open arms and filled their neurology waiting area with helpful leaflets and brochures.

I don't understand why my neurologist was so against this, as he was always saying how understaffed the department was and his work load was immense. Thankfully, I am now at a different hospital, after officially complaining about my previous care and receiving an apology, as well as a lot of excuses!

We all deserve a decent standard of respect and consideration from our health care specialists and should insist we receive the best possible attention. I, for one will not tolerate rudeness or patronisation. I hate to see and hear of vulnerable people receiving shoddy treatment. Fight for your right!

(I'll shut up now I've got that off my chest! Makes me sound like a grumpy old woman.....which I'm NOT)!

Twinks.