Paul's story

Paul Shrubb

Paul was diagnosed with Motor Neurone Disease (MND) in January 2006. MND is a degenerative disease that affects the stem cells of the motor neurones leading to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. Paul’s symptoms started in November 2005, when he started suffering regularly from cramps in his right thumb.

Paul says, “As a former professional footballer, I was used to cramps in my legs, but not in my thumb!”

After his retirement from professional football, Paul continued spending his time running his window cleaning business that he set up aged 19. Paul says, “When I was playing football, I finished at 1pm, then be out cleaning clients’ windows, we didn’t get paid the huge salaries that footballers get today.”

After several months of pain Paul went to see his GP who referred him to a Consultant at Frimley Park Hospital then on to St Peter’s in Chertsey where he had more tests. Paul had to wait for several weeks to see what the prognosis was.

“When the Consultant told me I had to wait for the final test result, I was very apprehensive.
My family and I were due to go on holiday to Florida, but my Consultant reassured me and
suggested we go ahead with our plans. The diagnosis was made a few weeks later in January 2006.”

“After the diagnosis, my wife was very upset but not surprised as she had been researching my symptoms on the internet and her fears had become a reality. I was very scared and upset. I have four daughters and my first grandchild was on the way. I didn’t know what MND was or what having it meant for me, the Consultant said, I had two years left to live”.

At this stage Paul’s symptoms were slight “I was having really strange muscle cramps and spasms on my arms which I had no control over. It looked like aliens under my skin making it move”.

After the diagnosis, Paul informed his local GP. Paul’s GP suggested he come to Phyllis Tuckwell Hospice.

Initially, Paul was able to continue working every day but in 2009, he stopped working full time as the pain in both his arms prevented him from carrying out the practical side of his job.

Paul has received support from the Physiotherapists, Complementary Therapists and Occupational Therapists who have offered him a holistic approach to the care he needs.

In addition Paul and his wife Judith attended the “Staying Power” course at the Hospice. The eight week course is designed to help patients and carers cope with unpleasant symptoms and ways to make daily life more manageable.

Paul says “The great thing about coming to the Hospice is being able to talk to others who are suffering from MND and how the disease affects them, as it’s very different for each
person. The Physiotherapy has helped me manage how much movement I can do without getting tired, the Occupational Therapists have helped me adapt my home to suit my illness and the Complementary Therapies especially the Reflexology really help soothe my pain.”

In the first stages of his illness Paul volunteered his time to the Day Hospice on a weekly basis and helped a fellow patient Ashley. Paul and Ashley worked on keeping fit and supporting each other through their respective illnesses. Unfortunately after 18 months 28 year old Ashley lost his battle with a brain tumour. “Ashley asked me to keep fit with him and I really enjoyed spending time with him.” For Paul MND has had the greatest impact on the use of his arms and also swallowing food can be problematic

Paul says, “I choose my meals very carefully. I had a very stressful situation when eating steak; I could not swallow it and nearly  choked. I am finding it difficult to write and getting dressed
is not as easy as it used to be.”

Throughout Paul’s journey he has tried to remain upbeat. The support of his family and friends has really helped him along the way too. Paul’s family have also been incredibly supportive of the Hospice by organising various fundraising activities.

With the support from the Hospice, his wife of 36 years Judith and his four daughters keeping him on his toes, he is looking forward to living the remainder of his life to its fullest.

Since Maddison was born, Paul now has two more Grandchildren. When asked what does the Hospice mean to Paul he said, “I would like people to know that it costs a lot of money to run the
Hospice, but without donations and support from people it wouldn’t be here. For me and my family it has made a huge difference and without it, my illness would have got the better of me.”

 Paul continues to be a patient at the Hospice. July 2012.