I expect we have all heard the same question on numerous occasions; "what is wrong with him/her? What is it they have?" I was even asked by the man who delivers fish if "it" was going to infect the children. I haven't yet found a good way of explain what the problem is. Say PSP and there's a blank expression. I have used Park in sons plus before now but that get a reply similar to " oh my uncle Fred had that" But uncle Fred will have just had parkinson. Then trying to explain the way PSP affects someone just get me in a muddle. It is a syndrome that has to be experienced and absorbed to understand.
Does anyone out there have a short and simple description that has worked?
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hellebore
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I just say my husband is terminally ill, I don't go into detail anymore, especially if George is there, it is not fair, I think to him, just have to take a day at the time. Once you say PSP they look blankly at you.
I think your right, to explain in detail is giving away part of our cared for dignity. To reply with a a simple description of the syndrome in medical terms may just shut the ignorant up.
"It's not contagious. nor genetic. It's a progressive neurological disorder like Parkinsons but much worse with no cure."
Can they immediately wrap that around their minds and understand.....Could I....???
If they ask more questions I will gladly answer them. It's not something that you CAN understand until you deal with it....Though I must say I am not even close to fully getting it. I thought I knew alot until Mindovrmonkey posed questions and added new insight....geez I'm glad there's not a test!...I take that back, we are tested daily......
Agreed. I do find all the different symptoms helping drugs and the different techniques that everyone tries mind blowing. It gets so overwhelming. I will work on something simple. There is a strange look that papers on most people's face when you preface anything with "neuro". It's a sort of "is he mad or having some sort of stroke". Illness of the brain is going to become far more common so looking at it glass half full I suppose we are all pioneers.
hi all you know what bugs me the most =======is having this psp no what gets up my nose is my daughter has a friend and of course every time I used to see her we used to kiss on the cheek as people do
to greet a friend well the other day I saw her and she hung back from me and then she said to me will it be ok if I kiss you now I wont catch anything will I well I felt devastated to which I replied quickly as I could only my cold if you come to close mate peter jones queensland Australia so much for psp
oK, it's not quite right but I tell strangers he has something like motor neurone disease. He is like Stephen Hawking and understands everything you are saying but is worse because he has no control of his eyes and doesn't have the ability to speak like Hawking. If it's a child I tell them his brain isn't working properly so his brain can't tell his body what to do although he knows what you are saying.
hi hellbore hows it going I have just been showered and they do not know
what I have mate they think I am just getting old and doddery anyway I just say I have a terminal illness and leave it at that unless they press for more information then i let them have it see yer mate take care peter jones queensland Australia psp sufferer and explainer chin up mate
We say " it starts like Parkinson's, but ends like ALS". Most people get that, and the ice bucket challenge last summer raised awareness. Not totally accurate, but possibly good enough and at least short if not sweet!
Hi Hellebore. PSPA have produced a business card size summary I always carry a few with me and hand them out to everyone who asks the question what has M got not just medical professionals. Contact them and they will send you some or if you come to the local PSP support group meeting the cards are always available. Best wishes Tim
I tend to say he is life limited with a rare neurological desease called progressive supranuclear palsy and it's a cross between parkinsons and motor neuron desease then give them a card. And they all tend to say ah just like Steven hawkins. Yes i say simular..... job done move on before the looks of sympathy make my eyes leak. Janexx
friends and colleagues , always ask how is John , I normaly say Much the same , but changes from day to day . then smile and say he is ok , or , I could tell you the truth and laugh if off .
Yea I just tell them it is like one of the nuron in her brain tells everything that makes her body function except for her brain, to relax let me help you out and as soon as they do it takes over and controls all functions that make her body work I dont know if it makes any since to you but it works for me
I tell people that it's a rare form of Parkinson's that is much more aggressive. If the person is over age 50, I tell them that the late actor Dudley Moore (from the movie "10" and "Arthur") had this disease. Most people under age 50 don't seem to know who he is. When I tell them what PSP stands for, their eyes kind a gaze over. Now that my wife is approaching the end , we get fewer questions than before. Probably because they can tell what she has isn't a good thing and they don't want to be rude and ask what's going on. But in the early years when she first started having communication issues, I would constantly have to explain her situation. At restaurants, the servers would almost be insistent that she told them her order. Now they just look to me and ask what she'd like. Of course, now I have to tell them nothing, which I hate doing because it looks like I'm punishing her or being cheap. For those reasons and because I hate to eat in front of her, we rarely go out. Because if I give in and let her have a single bite, she starts coking and aspirating. Then I really feel ashamed.
I have always said it's like a cross between MND and Parkinsons but worse, there is no treatment and no cure - Dudley Moore died from it.
I feel it's important to not brush it under the carpet so to speak or the lack of awareness and knowledge will always be there.
My Mum would just say Roy has a rare condition (that was her way of coping with it) - for me that isn't enough (raising awareness is my way of coping with it). Without awareness there is no chance of change, no chance of understanding and compassion and very little chance of getting much needed funds for research.
So many people know of Dudley Moore and his amazing talents, whilst they still don't understand about PSP, they might at least go home and 'Google' it or it might stick in their mind and should they come across a collection tin or charity event, they might just support it.
Sending everyone positive vibes to help you deal with it in which ever way suits you best x
You just have to gage whether or not the questioner is just curious, nosey, or really interested. I've found even good friends' eyes glaze over and after much explaining, weeks later, they still think it's Parkinson's. or they start should-ing on me.
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