MP visits support group for people with rare neurological condition

Dave Howarth with his wife Cath

Dave Howarth with his wife Cath

First published in Local news Ilkley Gazette: Photograph of the Author by , Reporter

A SUPPORT group for people with a rare neurological disease is being given a boost by an MP who read about the condition in the Wharfedale Observer.

Pudsey, Horsforth and Aireborough MP Stuart Andrew got in touch with Dave Howarth after seeing a story about him living with the condition CBD (Cortico Basal Degeneration) and the help he received from the charity PSPA

This week the MP was planning to visit the support group to see the charity's work for himself.

Dave, who was diagnosed with CBD in 2011, had shared his story with the Observer to raise awareness of the condition and to publicise PSPA - the only national charity supporting people with his condition and funding research into it.

Mr Andrew read the story and wrote to Dave congratulating him on his bravery in coping with the disease.

Dave, 57, and local group leader Pam Bower, then invited the MP to attend the August meeting of the PSPA local group to learn more about the conditions and how people are affected by them.

Dave said: "It is great that Stuart Andrew has agreed to attend our meeting. Hopefully he will be able to get first-hand experience of what it is like to be affected by CBD and PSP and help us raise the profile of the conditions.

"The group meetings are a big part of my life, I never miss one," he added. "They provide a wonderful opportunity for like-minded people to get together and talk about issues that are affecting them. No-one judges you."

CBD is a neurological condition related to PSP (Progressive Supranuclear Palsy) that directly affects the brain’s cortex. It can also affect other parts of the brain such as the basal ganglia. Symptoms often involve the loss of use in one hand, jerking or slowness of the fingers. Eye movements can also be disturbed.

The PSP Association (PSPA), which celebrates its 20th anniversary this year, is the only national charity representing the needs of people living with PSP and CBD. It provides advice, information and support to people affected by the condition, as well as to their families, carers and health professionals.

Dave was diagnosed with CBD in 2011, after suffering a number of falls.

Speaking during PSP Association awareness week earlier this year, he described his local support group as a ‘lifeline.’

“I have found solace in the local meetings that I go to in Leeds. Originally I thought it would be the worst thing to possibly do, to see people who are worse than me and what I would eventually become. But it was a revelation for me. I have found friendships and speak to people who understand what I am living with,” he said.

“I am a firm believer in the fact that I have CBD, CBD doesn’t have me.”

Progressive Supranuclear Palsy (PSP) is a Parkinson’s-like neurological condition which is caused by the progressive death of nerve cells in the brain.

Over time this leads to difficulties with balance, movement, vision, speech and swallowing. The average life expectancy from the onset of symptoms is seven years. CBD is a related condition.

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