PSP Association

Someone else lost to CBD

I discovered this week that a lady I have known for more than 60 years has died following 8 years suffereing with CBD. We were pals as kids and when we married and had our own familes, Pat very kindly looked after my twins during the school holidays while I was working. We have never lost touch completely and have always met up at funerals of friends, relatives etc known to both of us. (Sounds a bit morbid but nevertheless, we would always carry on from where we had left off last time). We have exchanged Christmas Cards for years now, so imagine my shock when her hubby phoned me to tell me that Pat had passed away on Monday. During our conversation I was able to ask what had happened and he told me that following a problem with her PEG feeding tube she had developed pneumonia. His next comment was that he didn't expect I knew what a PEG was! I explained that I was aware of it as my hubby suffers with PSP and at some time in the future we are facing the choice of PEG or No PEG. He was unaware of PSP and it was not appropriate at that time to ask him what condition Pat has been suffering from.

However, I spoke to him again today and he confirmed that Pat has been suffering CBD for the past 8 years. I cannot believe the coincidence we both noticed, firstly that someone actually knew what CBD was, and secondly that the PSP Assoc. champions both conditions in its attempts to find a cure.

My friend's husband, Tony, briefly told me of her suffering over these last years and admitted that at least she is now at peace.

God Bless to all CBD and PSP sufferers and my deepest condolences to all family and friends of my friend Pat. R.I.P.

SuzieQ xxxxx

13 Replies
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I am so sorry to read about your friend, Pat. I hope that her friends and family are coping as well as can be expected in the circumstance. Like you say, her suffering is over and she is now at peace. Best wishes, Debbie

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hi suzie q,

Im sorry to hear you lost your friend to CBD 8 years is quite

quick i hope i dont go that quick i hope i have a few more years

to go yet just as long as i can be here to walk both my daughters

down the isle when ? they get wed you take care of your self and

im sorry for your loss

ray

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Thank you Debbie and Ray. Your comments and thoughts are much appreciated and will be passed on to my friend's family.

Take care Ray.

SuzieQ xx

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Most of the doctors I encountered during my husband's illness (PSP) didn't know much or anythong about PSP. Twice before his illness got much worse he fell while out walking with his three wheeled walker and was brought back by paramedics. One of them told me he knew nothing about this illness and asked me to write out some kind of description and promised me that he would circle it among other paramedics in our county. This made me feel good as I was my husband's sole carer and among other things I felt extremely lonely as many people were not sympathetic because they didn't understand the implications of this illness. One Christmas I was told that a nearby Charity shop was selling Christmas Cards for all Neurological conditions. I went there and saw a long table with every Neurological condition except PSP.

This was most depressing.

Regards

Lina

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So true no one caring for my husband knows what he is going through..that don't understand he can not walk or move his legs.

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Hi SuzieQ,

We have struggled with PEG / NoPEG for more than a year now.

The inclination was NO most of the time. Final words came in from one of our doctors specializing in Geatric Care. He said:

" If I was in a similar condition, I should select the No-PEG alternative myself".

+ It hurts

+ It gives secondary problems

+ The best times we have together is when we are trying to eat together w/o PEG.

Our aim / wishes is to have a painfree final period with harmony. No prolonging of the unavoidable.

E. 71 yrs CBD since 4 yrs.

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A bit about general awareness of PSP - and probably CBD - or lack of it.

I recently applied for a Blue Badge for my husband from the Mobility Team of our local disability services department. About a month into the application, I was told that all the relevant forms had been received and the application had been approved and it would just be a matter of time before we got the badge. However, this morning we received a letter the department stating that the application had in fact been refused as my husband did not meet the "eligibility criteria set out by the Department of Transport for the following reason: NO DISABILITY THAT AFFECTS WALKING"

When I challenged this judgement, I was told that

1. the hospital consultants letter says slowness in walking

2. the medical form from our GP was a "poor copy" and they had difficuty in reading it

3. the condition of PSP was not known to them and as their department was inundated with requests, they could not look up each and every medical condition, they had to apply a very strict and rigid criteria to all applications.

I proceeded to put them right on a few things and whilst I was on the phone, I was told that the manager was looking up the condition on the internet!

Fortunately she is a very enlightened individual and she duly overturned the orginal decision and we should receive the Blue Badge next week.

Happy daze

dorothy-thompson

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Hi Dorothy,

So pleased you were able to argue your case and get a good result.

hmfsli

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hi dorothy,

Hope your ok what the hell do they mean no disability

that affects walking those with PSP/CBD always have

trouble walking im glad that they overturned the orignal

decision if they wont to cut back on spending they wont

to take the blue badges away from some of those people

that just pull up and park in disabiled bays then just jump

out the car and run to the bloody shop you can see that

there is nothing wrong with them but they still keep there

badge then people that need them get turned down,

take care

ray

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Hi Ray

Unfortunately you are right, there is a lot of fraud around the blue badge scheme.

Sadly disabled people are sometimes seen as a "soft" target and many things are done in the name of the latest buzz words - austerity and spending cuts. So its up to us, the fortunate able-bodied, to keep the flag flying and nil desparundum!

Keep smiling and take care

dorothy

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So sorry to hear about your friend. Every person's death diminishes us and in the small community linked by PSP & CBD we feel Pat's loss more because we can, to an extent, understand all that she and her family have been through in the past 8 years. Please pass on my condolences to Pat's family.

hmfsli

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just explaining to one other person means PSP & CBD is getting the publicity that it needs - I think most of us should have the T_shirts bearing the words "Been there, explained that".

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God Bless You.

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