A little bit of hope perhaps

[andrew]

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.

Love Andrew

[jillannf6]

hii andrew

a great blog with lots of positvies

do you think the davunetide is helpign yoru mum??

i already use a nasal spray for allerigic rhinitis and coudl not be accepted on the trial for that reason

i hopw your mumcconotinue ok

and thanks for the" good" news

lol JIll

[andrew]

Hi Jill

With regard to the davunetide, it could be. Its a little hard to say for sure, but certainly Mum is in a better physical and mental condition than she was in November, and that may be connected to the davunetide. Maybe when the trial has finished it will be produced in a form you can take. In the meantime, I suggest exploring something like the Cognitex. My feeling is that within the next few years people will be recovering from these types of illnesses, in the meantime, we all just gotta keep going!

Take care,

Andrew

[CateT]

Thanks for your lovely positive comment Andrew, lovely to read. My mum is on the Davunetide trial too and I was just saying the other day that she has remained relatively stable for the past year or more. From what I have read, PSP sufferers can decline very quickly, so I am cautiously optimistic that this trial has slowed her decline. We need to make sure that she gets more exercise I think. Fantastic that your mum is so active!!

Cathy

[andrew in reply to CateT]

Hi CateT, that's good to hear about your Mum. Like you, I am cautiously optimistic, and its good to hear that there are others out there that are also cautiously optimistic

[nightmare1]

good to hear that things are positive for your mum i lost my husband 5 weeks ago he wasnt diagnosed until 17th december 2011 I wish I had been able to try new treatements on him I think alas it was all to quick for steve its such a horrible disease but its nice to hear your news good luck to you and your mum

[andrew in reply to nightmare1]

Yes, it really is a horrible illness in so different ways, and Im sorry about your loss. I live in hope that at some stage there will be a significant break through. Thanks for your best wishes, they are appreciated.

[dorothy-thompson]

dorothy-thompson

Hi Andrew, so glad to hear about your mum. My husband is on the davenutide trials but of course we don't know if its the placebo or the drug. The trials finish in August and we do not know what will happen after then.

Like your mum,my husband takes lots of supplements and exercises a lot, the trouble is, I have to take him everywhere, he is very demanding, is unable to see what it is doing to me and as I am is sole carer, I feel like your dad most of the time.

I am sorry if I sound negative but as I have said many times before on this forum, there is no "help" out there and sometimes I wish people would be more truthful on how they actually feel.

dorothy thompson

[andrew in reply to dorothy-thompson]

Hi dorothy, I can totally relate to the difficulties of being a carer. As I said, my Dad was basically at his wits end, he was just so stressed. One of the difficult things about the illness is that it really does seem to have an effect on the personality. I have sometimes felt that Mum has lost all sense of her 'priorities', and she can also be very demanding in really quite odd (and frustrating!) ways. These days I am very involved in the caring, pretty much 24 hours a day, and my Dad can relax a bit. I couldnt do it without my wife though, who is very supportive of me, and my kids in their own way are also very supportive. There have been times when I have felt like screaming, and just a couple of weeks ago after a family row, I considered walking away....but its just not the right thing to do for any of us. I am not a religious man, but when times are tough, I sometimes remind myself of something that Jesus said....''this too shall pass'.

Thats good to hear that your husband is taking positive steps, I feel its so important to keep 'the spirit' going, and it sounds like your husband has plenty of spirit. Please let me know if you think there is any supplement in particular that you think is of value. I really do feel that the potential is there for recovery in the not too distant future.

Best wishes.

[Hidden in reply to dorothy-thompson]

I feel like you. my husband is being totally selfish and vile at the moment. he is very angry all the time, continually finds fault, accuses me of all sorts which aren't true. he occasionally hits me. It's pulling the family apart. My son and daughter are suffering. i've got pressure to put him in full time care but I don't want to. He doesn't want that either so we can't against his wishes. I'm at breaking point and don't know what to do

[andrew in reply to Hidden]

Hi dorothy, I just read this, hope things have calmed down by now. Im really struggling to know what to say, though I can relate to the difficulty of your situation. Somehow you've got to make sure you get some time for yourself each day, you've got to have breaks.... take a bath, or go for a walk, or get to the shops, or go and see a friend, or maybe go and have a massage. We all need a breather at times, a bit of 'me' time. My wife makes sure she sees friends once/twice a week for her sanity! One of the reasons that my Dad struggled so much with my Mum is because he wouldnt say 'no' to her. On the other hand, because he didnt say 'no' to her, he was totally stressed and ended up exploring a care home option. I do say 'no' at times, which sometimes upsets Mum, but on the other hand because I stand my ground when I need to, I am a bit less stressed generally and we have no need to look at the care home option. So I kind of think that maybe a bit of tough love here and there serves us all better. And as much as I get on Mum's nerves sometimes, she respects the fact that I do say 'no' to her!

Anyway, Im sorry for your troubles, this really is such a difficult illness for all concerned.

[dorothy-thompson]

dorothy-thompson

Thank you Andrew, I will.

Best wishes to you too.

[FranR]

Oh how I wish I could still say my dad was even remotely with it after 2 and a half years of psp diagnosis. His speech and walking were first to go so, although we still can feed him proper-ish food, i havent had a conversation with him for about 18 months, and he is now hoisted everywhere into his wheelchair. I can't even get him into our car to have a drive out. Dad was always VERY active - walking, golfing, gardening, playing with his young grandkids...sometimes it's not a case of if you don't use it you lose it - sudoku, fish...you name it dad did it all. sometimes the PSP gets the better of a person even though they battle and battle every day. My dad is not a giver upper but this is a fight he is not winning sadly. My cautious optimism went with zero results from the noscira trial in 2010, and now Dad is too far advanced for the Davuntide. This sounds so negative and bitter I know, but I miss him more than words can say. How can this hideous disease take a perfectly healthy 67 year old with so much still to give...??????

[andrew in reply to FranR]

Im sorry Fran, that really really sucks. The only thing that springs to mind (if you havent tried it already) is to maybe try a healer. I hesitated to say it because I know that it sounds crazy to some, and Im not suggesting that a miracle will happen, but maybe it might make a small difference, even if its just in an 'inner' kind of way. My Mum has received at least a dozen healings in the last year, and there has been no miracle by any means, but I have always felt after each one that something has changed/improved a bit. There are so many healers out there that I see no need to pay large amounts of money for this kind of work, in fact, some work for free. If you want any recommendations please let me know, and I will tell you who we have worked with. Otherwise, wishing you and your Dad all the best for now.