Fund Raising for a Cure

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 .

PSP

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

13 Replies

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  • Go for it Robbo!!! How do I get on to your Facebook page? Then I can like it and let it spread. You can send it privately if you wish.

    Lots of love

    Heady

  • I am not sure. Will try to find out. X

  • If you let us know the name you use for Facebook we can have a look, I was thinking of putting the same on my Facebook wall but wanted to check if you are ok with that....Pat xx

  • I too would love to put this on my Facebook page so I can like and share with others. You can send your Facebook name privately if you wish. Lots of love, Nanny857 xx

  • Yes, send us your FB name and we will like it.

    Thanks,

    NSH

  • I don't have a face book page but I do like / love your letter. It is so true that our loved ones are un or misdiagnosed. I read that there were only 7400 cases in America. I cannot believe that , However, when one does the math, that comes out to about 1% of the population....and that, I can believe!

    anyway you have my full support if not monetary , at least emotionally. Do not be sorry in fighting for the health of our loved ones.

    AVB

  • Thank you abirke. I haven't finished yet! x

  • I think the same thing goes for Parkinsons in the first place , they think it some old manor woman who just shakes .. ,,,,

    I have always been very open , telling people and explaining how it is . And how affects. People and each one so different .

    Face book is very good to get the message out go for it

  • How do you put such a long letter on facebook. You can hold the Ctrl at the came time you hold down the "c" and the computer will copy the letter. Then you go to facebook and hit the Ctrl again at the same time hit the "v". That will past it into your "write a post" on facebook. However, I think it is too long to put on facebook. Putting a link on facebook to cure PSP would be easier with a small not to support cause.

  • Robbo 1,

    I have taken parts of your post and put it on facebook with this link to curePSP. I wanted to post on here to get your approval, and so that anyone else on here can copy and past something shorter to post on their facebook. I hope you do not mind.

    psp.org/

    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. 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 do not mind at all, thank you. Let's spread the word! X

  • Georgetown hosppital/university is dupposed to be doing a trial for PSP with Nilotinib, Seems to have been effective when they tried it with Parkinsons

  • Please let me know where you are located. I will friend you on Facebook. I want to be involved. My husband has CBD. Good luck.

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