😭😭 😭 😭 😭....These are some of the titles on this site which break my heart, and bring tears into my eyes:
Letting go
Thank you to all
MyDad1Leaving
Thank you PSP Association
End Of PSP Era
The end of PSP Journey
Release at Last
Hardly a day passes without the appearance of similarly entitled sad posts telling us about the passing away of a nearer and dearer one with PSP. This has been going on for so many years.
People come and join the association and this website, seek help for a problem but eventually one day they write about the sad demise of their nearer and dearer one. No one has recovered from this disease untill today. Why? Because there is no cure as yet!
How long will that continue? Are their lives not precious? Why don't we find a cure for such a devastating disease that comes to give troubles and troubles and finally takes away the precious lives of our dearer and nearer ones before our own eyes and we just helplessly watch them leaving us heart broken?It's heartening that researches for discovering cures for other neurodegenerative diseases like Parkinson's disorder etc are being done on massive scales. Hardly a day passes without the publication of new researches on Parkinson's disorder ,(PD). However, that's not so in case of PSP, CBD, MSA. Equal and massive research efforts for finding cures are also required for PSP and CBD, MSA etc, the unimaginable horrible diseases. Sadly, almost nil researches are going on these diseases.
Written by
PineEater
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Dear PineEater - I'll apologise in advance for my long response - I don't wish to make anyone sad. Currently there is no effective cure, and as you say, families are losing their PSP warriors almost every day.
I think those who are living with PSP - as patients or carers or loving friends and family - have to accept the inevitable outcome without despair or bitterness. After all, noone lives forever.
My dear mum, who was diagnosed with MS at the age of 50, decided she would focus on living with her condition, not on dying with it. My sister, who received a completely unexpected diagnosis of terminal lung cancer, similarly focused on living. We made many wonderful memories in the time she had.
My precious husband had the same attitude to PSP. He wanted to celebrate - travel - make love - go to the beach - walk in the sun - play with the grand children - enjoy his favourite foods - watch his favourite movies and TV programmes - hum along to his favourite music - make me laugh every day.
PSP did not manage to take away all his joy, happiness, love and hope in spite of the everyday challenges and the progressive losses.
I think this is why we on this forum look for advice on how to deal with practical matters, alleviate the more troubling symptoms, obtain the appropriate support and funding, cope with the anticipatory grief and everyday frustrations. We support each other 🌻🫂 hoping to make sure life with PSP is worth living.
Campaigning for awareness and research matters. To quote our daddyt - "the first survivor is out there". My husband and I have volunteered for every research project that would take us - and in time managed to navigate the paperwork and logistics of the brain donation, hoping for those future improvements in diagnosis, treatment, cure and prevention.
I totally agree with you: it is so very sad but I am also so glad that all who post such sad messages on here were lucky enough to have found this forum and had the loving support and understanding from this international family. I came on the forum because my husband had CBD and I received so much benefit from it. I am now watching a very dear friend deteriorate rapidly with MSA and it is so hard. I watch the TV and hear all about the money that is being raised for research into MND because of the amazing efforts of Rob Burrow's friends and I pray that some of that research may, at the same time by accident, find out more about all these progressive brain diseases. Take care. Love AliBee xxxxx
Sadly my husband passed away from his 7 years living with cbd early Thursday morning. He has donated his brain which will hopefully help research into this awful disease.
I totally agree with you Pine Eater. I’ve been on here for over 10 years now, nearly eight since my husband died. I have never heard of any research about PSP on the media. Although his consultant did do a massive project for Parkinson’s, which unfortunately failed. My only comfort is that they do learn so much about the brain from these studies. One Day, One Day, something will come to the surface to help our loved ones. Too late for Steve, but if he contributed anything to the end result, then I am over the moon.
Thank you, PineEater, for your heartfelt and judicious words. You are exactly right! Just because fewer people suffer with a disease does not mean their suffering is less or less important!!!
What I don't understand is that these diseases are still classed as RARE !!How can that be the case when as you say there are so many who have lost their lives to PSP, CBD etc. And these are the ones we have heard about through this forum. How many others throughout the world are suffering/have suffered who we don't know about ?
I’ve not read the responses - sorry I’m quite tired today - so this may have been covered, and I’m not sure whether this will increase the research into curing this awful disease, but increased awareness cannot, surely, do any harm. I’ve tried, believe me I’ve tried. If for instance, it was used in a soap - as MND was recently in Corrie - it would be a big help. Also, if the PSPA could make all ( or more) GPs aware of the condition, it could help reduce the number of misdiagnoses. I’ve suggested to them, on two different occasions, that an email link to their own publication for GP awareness be sent to, preferably all GPs, or at least all Trusts would be a step forward, but have hit a brick wall.
Pine Eater, I completely empathize you. That may sound strange coming from someone with PSP, and who's score in the apathy column is greater than the empathy column. Many of you on this forum, know, and continues to be my goal to raise PSP-CBD, MSA and DLB awareness. Take heart, more research is being done now, than in any other time since I've been on this forum... 10 years.
Four books, nine Ice Cream Challenges, five YouTube videos with PSP-CBD, MSA and MND parody lyrics, have done little to move the Awareness dial. It is incumbent upon all of us connected, or had a connection to the PSP-CBD, MSA and DLB communities to affect change. Change that will raise awareness. Awareness that creates understanding. Understanding will create Support. Support is required to further research into real treatment - not just symptom management, and ultimately a cure.
The Faces and Voices campaign from one of my recent posts will raise more awareness than in any other time before. My 'test ' video has nearly 6K views on FB alone. That's five thousand views more than I have FB friends. Five thousand more opportunities to raise Awareness. My next comment is not meant to be, or viewed as a slight. It comes from a place of frustration some are now expressing.
We must be our own advocates. We cannot wait for someone else to do the work, because that 'somewhat else' is waiting for others to the same... nothing to little gets done. It's a pattern that continues to play out, as our loved ones lose the battle to these insidious diseases.
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Cause of PSP....reflections:
Levadopa "challenge" for CBD/PSP/Parkinson's?
Share experiences of CBD or PSP 
FYI: CurePSP Conference
Local Support Groups in the UK. 
