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
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SuzieQ
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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
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
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.
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.
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!
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.
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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