What should be the most loving tribute to PSP, CBD and MSA Fellows?

[PineEater]

What could be the most loving tribute to PSP, CBD and MSA people who leave this world ? Quotes, eulogies, and stories etc do serve as tributes. However, neurodegenerative diseases like PSP, CBD and MSA have no cure as yet. The sufferers lives are a living hell. So, what is urgently needed is a cure for these sufferers. We can not bring back our fellow sufferers who have left for good but we can at least bring happiness in the lives of those who are suffering from these horrible diseases. How can a cure for such diseases be found out? That can only be discovered through research. And research requires funds. Obviously, a most appropriate tribute to such people on part of the relatives and friends of the sufferers will be to donate money to the research bodies like associations or trusts to enable them to carry out research on such horrible diseases. In my view that would be the most appropriate tribute to those gone if we could cure those as soon as they get afflicted with these awesome diseases. And the most desirable tribute by the sufferers themselves will be to direct in their will major part or all of their estate to a research fund under research bodies like associations or trusts to conduct scientific research and advancements leading to the desired cure for these diseases. Further, I am of the opinion that allocating in will on part of the sufferers a part of their estate to their family members who can live independently is highly undesirable. That should instead be allocated for the research purposes to help find a cure for such diseases.

[Lassie1331]

hi PineEater,

The problem with research is it usually requires the interest /funding from the big pharmaceutical companies. Because MSA is a rare condition it becomes an orphan condition.

The big pharmaceutical companies are not interested because they would not make enough money from finding advances in treatments or cures.

Sadly it’s all about money.

I know this doesn’t help but puts a bit of understanding on why it’s not happening.

[JJAJJ]

Could a cure for such a disease be found out by researching every MSA patients life history when diagnosed to look for similarities to research the CAUSE. My husband was diagnosed with MSA and then passed over to the occupational therapist. No further investigations took place.

[MrsDoodah]

I think JJAJJ has a point. I have often read comments on this forum relating to similar life incidents that my husband also experienced - notwithstanding a number of occasions where he BADLY bumped his head in his earlier life pre condition, plus a severe deterioration in his symptoms when he did so when diagnosed (much more noticeable than any hospital induced stays such as falls, infections, respiratory problems etc)🤷🏼‍♀️.

It could possibly be insightful to look into lifestyle, incidents, treatments and handling of the symptoms in individual cases, to perhaps identify trends and then take it from there to further research any area that jumped out?

Just a thought as an ex nhs clinical audit and effective manager😆