I have written this and posted it on Facebook. I have also sent it to others in my address book and to a mens group that my husband has belonged to for many years. I am trying to make PSP as well known as other neurological diseases and to persuade people to support it. So far, I have had positive reactions. If anyone on this site feels that they too, could publicise the illness and the association, please go ahead. I am glad that I did .
My husband has the rare disease PSP, (Progressive Supra Nuclear Palsy). It is not very well known, even by medics, and is often misdiagnosed as Parkinson's disease, as was his illness, in 2003.
In 2011, I read about PSP and was convinced that my husband had it. He saw several consultants who still said that it was Parkinson's. It took me two years to convince the neurologists and eventually, in 2013 after a brain scan, they diagnosed his condition as being PSP.
We were, and are, not alone in this struggle for a diagnosis. Look on the "HealthUnlocked" PSP site. You will see how carers and sufferers have had difficulty getting this disease correctly diagnosed.
It is a terrible illness, robbing sufferers of many things including, mobility, sight, and speech . It is terminal and there is no cure, or indeed any treatment for it.
It is estimated that there are 10,000 people in this country, suffering from PSP. Some think that there are twice as many, but that it is often misdiagnosed as Parkinson's.
I shared this, because I want everyone to know about PSP. I want them to support the fight to make it as well known and as well supported, as Motor Neurone Disease, Parkinson's and other neurological illnesses. I want people to give generously to the PSP Association, who have set up five clinics around the country to support sufferers. I want people to contribute to the fight to find a cure for PSP by funding research.
I make no apology for the seriousness of this post. I am sorry if I have upset anyone. The truth is, I want to do what I can to help future PSP sufferers, so that they do not have to undergo the lack of understanding, treatment and cure, that my husband has had to experience.
It is a cruel, debilitating, exhausting and incurable disease.
If you do get the chance, please support the fight for a cure, in any way that you can. X