If Only.........

[Holmbury333]

I have just come across this PSP Association site and read with tears in my eyes. I lost my dear Mum 18 months ago and have just been sorting out old medical paperwork, after years of being diagnosed with 'Parkinson's', Vascular Parkinson's, etc 4 months before she passed away from pneumonia another Neurologist told us she did not have Parkinson's but PSP..... we had been through years of illness, falls in fact all of the symptoms given. I wish I had been aware of this earlier and wonder how many others are misdiagnosed. I have learn't more in the last hour than any information we were given over the years from proffesionals - it was all very vague. At least now I know, Mum was a fighter and never accepted defeat even though the meds (for Parkinson's) did not help at all.

Thinking of you all....

[honjen43]

You are right! It is a wonderful site for support. I lost my husband to CBD only a few months after being diagnosed with Parkinson's. So few docs seem to have any idea it exists, whether PSP or CBD and ignore it even if on charts as doesn't "fit" with their protocols.

So sorry for your loss. The feeling is raw for a long time! Even after 4 months I still come back here, trying to work out what happened, and to try and help others.

Take care Holmbury333 . We will always be here! Hugs, Jen

[Holmbury333 in reply to honjen43]

Thank You. Sorry for your loss as well. Being nearly full time carer (only child!) for many years with the help of agency only in last year, I remember being in my car thinking (and crying), why isn't anybody helping us. I realise now, the nature of the condition and the fact that most people are just not aware of it or the symptoms. Hopefully now I may be able, as you say, to be of help to others in some way. Take Care.

[easterncedar]

Thanks for writing. I hope it may be of some consolation for you to know that there are currently no medications for psp that would have been likely to have helped your mother. Many many people are misdiagnosed. Psp is pretty rare and few doctors have ever seen it. My sympathies on your loss. Peace, Easterncedar

[Yvonneandgeorge in reply to easterncedar]

Sorry for the loss of your mum, at least this horrible disease can't hurt her anymore , this site is the best thing ever, don't think I could of carried on with these lovely people xxxxxx

[Holmbury333 in reply to Yvonneandgeorge]

Thank You ~ so true, she is not suffering any more. It is a horrible disease. I only wish I had found this site earlier.... caring for Mum I found very lonely and stressful but I am so glad I did what I could, I think we both thought that the next neurologist we saw would 'give the cure' but the diagnosis really was very late on and as everyone says there is no cure......yet.. we live in hope.

[Holmbury333 in reply to easterncedar]

Thank You easternceder for your response. I had no idea how rare this illness was. Mum was on and off Parkinson's drugs but as I now know they would not have helped. Yes, in a strange way I now have some peace knowing that we did all we could, there was no magic cure. By fluke we saw a different neurologist near the end, as the normal consultant was away..who diagnosed psp but in that final month I was too caught up in caring to start searching online. Maybe now I can try and do something constructive.... I work in a GP surgery........ even the Doctors there were not aware. Thanks again.Holmbury333

[abirke in reply to easterncedar]

Well said EC. Holmbury, there is no meds out there so no need for guilty feelings or regrets. Knowing that your mum was a fighter and took methods to help her no matter what the outcome is consolation that she did not miss any special treatment with the new diagnosis. Like Ec you have my sympathies. And I do hope you have found peace .

AVB

[Marie_14]

Holmbury

So sorry that you didn't know what was wrong with your Mum until she was almost dying. As others have said it is so rare and no cure. Maybe in a weird way it was better not to know? The only problem is you were fighting alone?

Now you do know however, and you are so right that doctors don't know about it. Even when they do my experience is they don't help. Probably because there is no magic pill? It makes me mad because this site is here and the people are so kind and brave. I am a new member on here and I am so glad I found it. Every doctor's surgery should have information about PSP and this site, to help people. Other rare neurological conditions the same. My husband apparently has signs of PSP and MSA. Bet you never heard of that either? I say apparently, as I think the doctor is covering all bases so my husband really doesn't have a proper diagnosis. That is the pits because nobody really wants to help us! He was told he wasn't ill enough by our local hospice, despite also having a rare form of Leukaemia. Anything you or anyone else can do to help draw attention to these conditions would be great.

Thank you for writing to us all.

Marie_14

[Holmbury333 in reply to Marie_14]

Thank You Marie_14 for your response. Sorry about your situation too - at least you have found this site now and I am sure will find help and guidance.

Only having found this site a couple of days ago, I have been thinking a lot about the situation and as you say maybe in a strange way it was just as well we didn't know. Going through all of the symptoms, my poor Mum was a textbook case so to speak with the complication of osteoporosis - so every time she fell.. she broke both hips, wrists and arm. She was also registered blind, macular.... even now I wonder if the eyesight problem was part of psp.

I realise I cannot change what happened but I intend to do what I can to spread the word, as you say this info should be available to all. (If a Consultant Neurologist from London gets it wrong, it sounds like an uphill struggle..) Good luck with your diagnosis and keep fighting for the help. Our loved ones were and are 'vulnerable and at risk'..... and the medical profession should respond to that. Thanks again. Holmbury.