Charity

FOR PSP


A Twin's Tribute

I am a twin and my twin sister is called Eugenie. Eugenie died on September 3rd 2007 a fortnight after our sixtieth birthday. She had a disease called Progressive Supra Nuclear Palsy (PSP) . This disease is the one that Dudley Moore suffered from. Julie Walters played the part of Dr. Turner, who also suffered from this disease in a 'Short Stay in Switzerland'.

Eugenie was well above average intelligence, a feisty beautiful woman and practice manager in a local doctor's surgery. I first noticed that she had a problem in 1999 when I was stock taking for Almost Unwearoutable and she could not add up the balls of wool for me. Her personality was changing and she was becoming more withdrawn. From 2000 to 2003 we went on a patrol of various specialists including one in Harley Street. Nobody had an answer. Her doctor was mystified and was not sure if it was neurological or mental. Eugenie felt unbalanced, her eyes looked strange, slightly staring, she could not walk in a straight line and she said that she permanently felt drunk. She gave up drinking. Eugenie was falling mostly backwards but sometimes forwards and she broke her pelvis.

In July 2003, I went with her to her doctor and he told us that the Neurologist had advised that she had PSP. We looked on the PSP (USA) Website. It was so negative. No Medicine was available, nothing and a body packing up with brain intact. Eugenie could no longer weep but I wept for us both.

The Battle to give Eugenie a life had begun

I could not have done this without the help of the PSP Organization and in particular Maggie Rose who is the Specialist nurse for PSP in the North.
Maggie Rose guided us through everything – nothing was too much trouble. Whenever I rang she would answer within twelve hours but more frequently she would pick up the telephone. From the right laxatives to how to get Eugenie's head down, and her spirits up, Maggie Rose would have the answer. During the horrendous time when Eugenie had to have a peg fitted in order to feed her, Maggie Rose was on the end of the telephone giving help and making it all seem quite normal.
Encouragement was given to take Eugenie to France which she loved.

The PSP organization had started a Website with a Forum which again was very useful.

I went to the meetings that PSP ran and there was always something, some way to make Eugenie's life more normal.

The PSP Organization, Maggie Rose and all Eugenie's carers managed to give her quality of life in spite of everything. Eugenie was still walking by the end, albeit with help and that took tremendous courage. So this is not only my tribute to my twin sister but also a plea for money for the PSP Organisation







Some facts are:

It still takes over three years to get a diagnosis.

PSP is more prevalent that Motor Neurone but no one seems to know about it.

There are still no drugs to effectively treat PSP

Husbands, wives and family members are being torn apart both mentally and physically trying to look after their loved ones at home. They all need the support that I got from the PSP Organisation
The Organisation needs money
PLEASE PLEASE HELP US

If you want more information go to www.pspeur.org