Imagine if your Mum, Dad or Partner, slowly develop a stagger in their walk, find it difficult to get on or off a escalator, need a handrail to get up and down one or two steps. Then they have difficulty getting in and out of a chair or feel faint afterwards.
These are some of the early symptoms my wife experienced that lead us on a search for a diagnosis and that is your first hurdle, Most general Doctors will never have heard of MSA, Most Neurologists have no or only minimal awareness and the current reality is that the only certain diagnosis is after your loved one has passed away, before then using a series of tests your Doctor will diagnose probable MSA.
Incontinence became a issue, her hand-writing which was so beautiful became smaller then barely readable as she lost control of her hands.
Losing the ability to walk or being able to feed herself coupled with her limbs stiffening and being constantly in pain, forcing her to be bedridden. Muscle spasms and rigidity forced her to have a constant lean to the left with her head. Her voice disappeared and her eyesight began to fail. All the while, her sense of feeling, her ability to hear, remember, comprehend and understand all that was happening was both a mixed blessing and a cruelty.
All of this occurs gradually. For my wife's 5 years after a 2 year period before we had a answer to her deteriorating health and there are no effective treatments to slow or eliminate these problems. Pain Management is the only effective option but it in itself creates problems.
MSA itself will never be your demise its the secondary issues that arise, pneumonia, septicaemia or something else will be.
Paula was so determined that in the future MSA sufferer's, families and friends would have some hope or treatment, she insisted on supporting the research by doing the only thing available to her, donating her organs to medical research and giving me strict instructions to ensure research continues through helping others and supporting research.
This is a truly hideous condition and while the sufferers are small in number, the effect on their families and friends is large and all deserve to have some hope that a treatment will be developed or a cure is eventually found. The current research programs have made great steps forward and will potentially help other neurological dis-orders such as CJD or MND. Please consider donating and giving a glimmer of hope.