Hi every one
Idont know if its just me but since i have been
diagnosed with cbd and told that there is no cure
the doctors and the hospitals seem to push you
to the bottom of the waiting list its as though they
think there is nothing we can do for him so he
might as well wait or am i being paranoid.
My husband was diagnosed with PSP in August 2010 and I can honestly say that here in Solihull our experience with all the various professionals dealing with him, has been the complete opposite. He is always treated with such kindness and understanding and we couldn't ask for a better service. So sorry you are not getting better service and I hope things will improve. Take care.. SuzieQ
hi suzie q
thanks for your reply im glad you are getting a good service the
trouble with my hospital is its full to over flowing and you have to
wait so long for an appointment i havent seen a neurologist for
over a year now so i think im getting worse but i would like to see
what the expert has got to say, hope your husband is copeing ok
with his psp , both of you take care of your selfs,
Ray
sosrry ray your experience is so bad
I cannot fault my GP buit is difficult getting social services on board but funds r so tight i uyndrstand tha t -
1 has 21push for everything!
take care
jillx
hi jill
thanks for the reply my gp had never heard of psp or cbd when i was
diagnosed and he still says its the cbd to blame for everything that i go
to see him for,Its not his fault that there is not more information out there
about these diseases as for social services they dont wont to know i have
been after them for over 3 years to have a shower fitted but still no luck
take care
ray xx
Hi Ray,
3 years?? Gosh, we've been waiting for someone from social services to come and assess Mum's bathroom for 8 months and I thought that was bad enough!!! 3 years is ridiculous. I hope you make some progress soon!
Kathy
hi kathy
it was 2008 when they came to look at the house took
one look at the bathroom said dont know what we can
do with that, said they would be back and im still waiting
lol
ray
My dad had PSP and unfortnatley passed away in January. We had some awful hospital experiences and at one point threatened to sue the hospital for neglegence. That soon got their butts in gear to fix his peg tube. It seems the louder you shout the more likely you are to get seen. My dad was lucky as he had 3 kids fighting his corner and without that I am sure he would have faded away in hospital 2 years ago not 5 months. During the last stages of his illness he was not looked after very well in hospital and we always had to clean his mouth and move him back into what we hoped was a comfortable position. Ensure he was getting fluids and his medication as they messed that up a number of times. We did have a live in carer for the last 12 months or so which really took the presssure off us but you again need to fight to get that and if you have any money hide it or you will have to pay for a carer!
Hi julie,
Im sorry to hear that your dad has passed away like you i
have three kids that i hope when needed will put up one
hellever fight, and my wife is my main carer but she struggles to
get me in and out of the bath and now shes done her back in
trying to lift me, Im quite lucky that i can still do a lot of things
my self and i can still drive but i have to be reasessed every
three years to see if im still safe to carry on driveing safely,
we have to fight to get anything but i do get a lot of help from
the parkingsons support worker and psp nurse specilest
i dont need to hide my money because i dont have any lol,
take care
Ray
Has your wife had a carer's assessment? She is entitled to one and this may be another way to push Social Services to take some action especially as she has hurt her back in the process of caring.
hi hmfsli
yes my wife has had a carer assessment about a year ago
but it didnt change any thing they still didnt wont to know
thanks for the info
If all else fails then perhaps you could contact the Local Government Ombudsman - lgo.org.uk. They may be able to offer advice on what steps you can take. A 3 year wait is clearly unacceptable. This report seemed pertinent - lgo.org.uk/news/2011/jun/br... though I am not in any way suggesting that you are elderly!
hi
thanks for the advice hmfsli i will look into it
i might not be elderly but i some times feel
like i am lol
Hi Ray,
My mum was diagnosed with CBD in 2004, I feel very much the same as you, every time I take her to doctors they say its the CBD and speak to neurologist, I speek to neurologist they say GP should sort. Mum gets no support at all we have to do all the chasing. Have got Social services back in for re-assessment but not holding my breath.
My thoughts and prayers are with you
Take care Rosemary
Hi rosemary,
nice to meet you at last some body else with cbd your the first
person i have spoken to on here with cbd in the family, I f you
dont mind me asking how old was your mum when she was
diagnosed i was 49 my gp had never heard of cbd so he was
as much in the dark as we were so that gives you a lot of hope
to start with, dont you get any support from the parkingsons
nurse they are the best ones to see the neurologist does not
seem to have time to take care of us, Dont hold your breath with
social services they dont wont to know ive been waiting over 3 years
for them to do something with my bathroom and they just cant be
bothered , i hope your mum is keeping as well as she can if i can
help you in any way i can just ask,
take care ray
Morning Ray,
Mum was 60 when odd things started happening - little lapses in memory was the start, beiny unable to write certain letter/number.
We have been seen by the Parkinson's nurse but again you're just left to manage and cope as best you can. The neurologist keeps saying this is progressing very slowly - which isn't good for Mum, bless her. We lost Dad suddenly to cancer in March and Mum has just got progressively worse since, Because she has little or no life her independance is pretty much gone she sit at home watching TV - things get muddled in her head and she gets so frustrated as she is so aware what is happening. I don't know what to do for the best, hence calling SS back in. We are having further assessments, but they don't treat her as an individual in respect of her condition, in my opinion.
Equipment wise - SS have been quite good, however we have been told that any work needed we will have to fund as my Dad, bless him, saved for their retirement.
My prayers are with you Ray, There are no answers to this condition, mum was having faith healing for a time but unfortunately he was taken ill and has never resumed. I may look into the EFT you mentioned - although not sure if she would get the same benefit.
If you need a ear to get anything off your chest just let me know
Rosemary xx
Hi rosemary,
Hope your keeping well hope your mum is keeping well as can be
i have a problem with my memory some days i cant remember what
i done the day before, and when im righting letters i get the letters
back to front,You say u see the parkingsons nurse which i do as well
at the local hospital but do you see the parkingsons information and
support worker i see her quite a bit shes great she comes round the
house to see me fills in any forms that need doing and makes phone
calls on my behalf infact she is comeing to see me next tuesday which
im very much looking forward to,Im sorry to hear that you lost your dad
in march , i lost both my parents before i become ill so at least they didnt
have to watch me go through life with cbd,ss put hand rails up round the
house and out side but dont wont to know about the bathroom, I dont
think its right that you save for your retirement than have to spend it
haveing work done so you can live a better life, i aggree with you that
there are no answers to this condition you just try to stay as positive
as you can thats all you can do, eft is very good it has worked wonders
for me it may work for your mum and it may not , what part of the country
are you in, Im in essex not far from colchester, you take care of your selfs
best wishes ray xx
More on the limbic system and guilt
The last puzzle piece.
thanks for the replies
First Symptom Survey - Last Comments
Last days with mum
