Thought it might be nice to give a little bit of hope on a sunny day. First of all, I think it might be good to hear that my Mum first noticed (PSP) symptoms at least 12 years ago, maybe even 13. I have sometimes read that people only survive for 5-10 years with PSP, and although this might be true for some, it is obviously not true for all. Dont get me wrong, my Mum isnt in a great condition, and some days are downright bad. Her swallowing is probably been the biggest issue in the last year and she has had a PEG since January which has turned out to be a blessing because she has put on weight rapidly, and I am also now able to give her supplements and herbs that I had previously wanted to give her, but couldnt because she couldnt swallow them. Her balance is dodgy, her voice comes and goes, but she exercises on a cross trainer and a stepper twice a day, she is fit and strong, and generally very switched on, aware, and present. On good days I get the sense that recovery IS a possibility. She has been on the davunetide trial since November......
As I said, I have researched the world of supplements and herbs quite thoroughly in the last few months, and here are some that I think MAY be of some benefit, but please bear in mind that I am not qualified in any way shape or form, Im just fumbling my way through a mass of information! But I think these are at least worth looking at....they are all focused on the brain/nervous system. When exploring them, please make sure they dont interfere with any current medications.
Cognitex (is a complex with lots of the good stuff in) Neurozyme (loads of good herbs in this one), Choline (there are lots of different ways to get this but it seems pretty essential), Huperzine, Astaxanthin, Taurine (an amino acid), Glutathione (also an amino acid).
Vitamins and minerals could well be helpful including B, D, E, K. I use Nature's Plus Source of Life Gold, which is expensive and there are probably cheaper ones available. She also takes Omega 3,6,9 and some apple cider vinegar (which by all internet accounts seems to cure everything!)
I have also been reading about the pineal gland in the brain and I have a suspicion that Mum's is 'calcified', as many people's are, which isnt helping. There are ways to decalcify the pineal gland, but it means getting off the tap water which is likely fill of fluoride, and is one of the causes of calcification. Apparently skate oil is a good remedy, and has the benefit of the Omegas too.
Finally there are the 'nootropics', which Mum hasnt tried, but I am not averse to. I do think care must be taken though when using them. Its the 'racetam' family that is relevant. There is also a product called Centrophenoxine that looks interesting.
Just to emphasise again, Im not a doctor! Sometimes difficult times require looking at alternative solutions though, and I am open to different things.
I also think that with PSP, its a case of 'use it or lose it', which is why Mum exercises twice a day. Anything like yoga, pilates, alexander technique, tai chi....is also all good in my opinion. Chiropractic/osteopathy might have benefits. Mum also receives regular (free) Reiki treatments...there are plenty of people offering their services free these days on the internet.
Anyway, like I said, we have good days and bad days, but I refuse to write off Mum's chances of recovery either through medical means or alternative means. I feel that we have to just....keep....going!
Best wishes to all the PSP-ers and carers out there. There have been times when I have thought that the life of a carer is at least as difficult in its own way as the life of a PSP-er. It got to a stage in my family where I think my Dad's stress (as a carer) was so intense that the PSP could well have killed him before my Mum! We take each day as it comes these days and do our best to work as a team.