Hello

Hello

Hello everyone, my dad has been diagnosed with psp, he is 67. He's early stages i think, no backward falls yet. Just complaints about his eyes. He has been tripping up more often over the last few years. Spoke to my mum and she says he seems to trip when exiting vehicles. But it's only been several times and may just be normal trips and falls. His speech is still ok, but he does the slurred pause before speaking sometimes. He's still able to go out for walks by himself. :)

My parents run a successful b&b and my dad is still able to cook the breakfasts :) I've taken on his role as toilet scrubber so I'm at their house everyday. I'll be taking on more roles as this develops and my mum needs to spend more time looking after him.

I've seen some vids, no-one else wants to watch them. I done some light reading on the Indian diet thing, the fecal transplant thing and the nicotine patch thing. Anyone have any thoughts on those in the case of psp? Anyone have any other things for me to have a look at?

If any of you have a list of things I need to know and do I would really appreciate it.

What are the therapies the nhs will provide for us? I'm looking to get a head start on these. I have dug out the wii fit for core muscle/balance. Are there brain exercises we can start on?

I've also read about parkinsons starting in the guts, there's a tear in the gastro lining somewhere which infects something which then Infects the spinal fluid which goes into the brain. Any thoughts?

Thank you :)

16 Replies

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  • brian, dude, i thought I was knowledgeable...don't even know of which you speak.....

    It's subtle maybe talk with dad about things that he'll have to forgo ie driving, walking by himself, Bruce did that and people had to run to his rescue many times.....once when i was walking with him, he fell all the way into the creek, a soft roll and tumble but it was VERY hard to get him up and out....this was in the 2d year of diagnosis. elbow to waist. If the object dad is trying to get at does not allow the elbow to keep in constant contact with the waist, he may be in for a fall as he is "over reaching" and may lose his balance.

    Constantly exercise motion of the feet. Concious effort to pick toes, lift foot, put toes down as in a dramatic stepping motion. Bruce has lost the ability to unconsciously make a foot step.

    MILLIONS or at least two or three more things to tell you but for now, excercise the feet. and tell me of...some of those vids you watched...fecal or fetal transplant?

  • Not fetal! Lolz :)

    Yeah it's poop. The theory is a break in the gastro tract releases something that infects the valgus nerve. The infection then spreads up through the spinal fluid into the brain. The first link is where I found info about all the methods I mentioned.

    forums.phoenixrising.me/ind...

    link.springer.com/article/1...

    The nicotine is definately for classic PD to deal with the spasms. But is of interest for when we reach the bed ridden stage.

    michaeljfox.org/foundation/...

    ncbi.nlm.nih.gov/pmc/articl...

    The Indian diet one is fecal transfer as well plus dietary advice and what not to eat and foods not to eat combined.

    not sure about it cos they claim to be able to cure/treat all sorts.

    parkinsoncure.com/parkinson...

    Thanks for responding brian, im david :)

  • I will spend some time on these tonight and following. You know something has to get in there, the brain or spinal fluid to start making things malfunction......its not genetic it may not be mere age, though predominately male, it is not just a male thing, Not a racial thing not necessarily an environmental thing though there was a people in Indonesia(?) that ate a fruit that caused a higher risk for PSP..... it is a break down in a chromosome.....17....it's been so long now I'm just trying to keep B off the floor......

    Oh and another little thing I say when using the walker or when admonishing him to not over reach..."Hands to Hip and you Won't Slip"

    AVB

    Trying to figure out how to get a cd onto this site....help!!!

  • I just gave him a low dose of decarboxylated herb and he said he didn't bump into as much stuff as usual when he was walking about the house. He said it was easier to stand up and his voice was more normal. Baby steps.

  • Really? Curious though they have been using them on other neurological disorders, why not this one!

  • Welcome to this site. Sorry to hear your Dad has PSP. We are all carers, like myself, my husband was diagnosed two years ago. Or sufferers of this evil disease. We will tell it how it is, some will frighten you, some will give you hope, most we try and make each other laugh and know we are being supported.

    PSP is a lonely, long old road. There are no easy answers. I'm afraid I haven't heard of half you are talking about. But being new to this, you may have some useful information. We would all love to hear more!

    The only thing I know that helps, is physical exercise. There are exercises, based on Multi directional movements for people with Parkingsons, that we have found to be brilliant. Any small improvement is mega, in our world! Brain exercises, not found any yet! Just keep a normal life as possible, I think, is the key. PSP is life limiting, life changing, but it doesn't mean life is over. New things, new activities, become the norm. Not what your Dad is use to, but something he can do!

    Your main task in this, is going to be helping your Mum support your Dad. Please DONT underestimate this. I know at the moment, you want all the answers, find the magic wand. Keep doing this, but please leave some energy for later. You will need it.

    We are all here to support you, your Mum and Dad, through this journey. Please feel free to rant, rave, cry, scream, anything! Nobody judges here, we are all going through the same thoughts, worries that you are suffering. We help during the bad days and hopefully will share your good days!!!

    Keep posting, would love to hear more about these new treatments.

    Lots of love

    Heady

  • Thnx for the kind words heady :)

    Yeah, take each day as it comes.

  • Welcome to the site but I'm sorry you had cause to join. I was interested in the tear in the gastro lining theory. My husband, also 67, has suffered on and off with ulcerative colitis since 1977. He was hospitalised 4 times. I had my own theory that years of having a damaged bowel must have stopped nutrients getting through the wall of the bowel as it was so ulcerated. If the nutrients didn't get into the bloodstream, they wouldn't have fed the brain. My theory but maybe it was an infection instead. I did tell the GP what I thought but he dismissed it as unlikely.

    I'll definitely check out the site. Thanks.

    Nanna B

  • hi Bev , When the Parkinsons nurse was with us last she said that she was quite excited about the bowel theory .

  • Thnx for the welcome :)

  • WELL DONE DAVID FOR TRYING TO GET ON TOP OF THIS AWFUL DISEASE - I THINK YOUR DAD IS VERY LUCKY TO HAVE A SON SUCH AS YOU

    SHARON

  • Thanks Sharon :)

    I'm gonna compile everything I learn and post the links to the knowledge.

  • THANKS DAVID - THAT WILL BE MOST USEFUL

  • David, my husband is the same age as your Dad and about 2 years into the condition although diagnosis only confirmed last Nov. He is still able to go out for walks but uses a walker for added confidence as he has fallen backwards on occasions. Since having his Sinemet doubled in Feb things have improved with this walking, physio have helped there too. He now suffers double vision which is awkward considering he has a rare eye disorder that has meant he has only about 10% vision in his left eye. He did have some trouble choking - not often though - when eating, but a change of routine in eating has sorted that. He also uses safe straws - given us by the people at the Swallow check clinic (you can buy online when necessary) they are straws that have a valve in them so that the patient only has to do the big suck once, all the time the glass has fluid in it, and you will notice the straw is then constantly topped up with the liquid.

    I am guessing you are in the UK - if so it would be of benefit for you to go on the PSP Association website to find out who your Regional PSP Specialist Care Adviser is. I reached rock bottom at the beginning of the year going round in circles trying to find the right help and benefits. My PSP Adviser touches base quarterly and can get the right people involved at the right time, they can also arrange for one of their financial people to come and see you and your parents to ensure you start getting the benefits you are entitled to. My hubby gets Attendance Allowance and I therefore get Carer's Allowance - the first is not means tested and is given as a higher benefit than DLA although with AA you cannot qualify for Mobility Car, the Carer's Allowance is means tested and I was somewhat surprised to find how much I qualified for so it is worth getting started, even if you put the monies away for needs at a later stage or for special things for your parents to do whilst they are still able - as we do.

    I am interested in what you have put and will do some more digging on those topics. Look forward to your future posts. Take care

  • Hi David,

    I too am sorry you have the need to join this site but trust me you will get lots of help and support from the only people who truly understand what you are going through!

    My husband was diagnosed last year after a couple of years of unexplained falls and changes to his personality. He has nearly killed himself twice by falling from the top to the bottom of the stairs, resulting in nasty gashes to his head, we have had a stair lift fitted and we couldn't cope without it! Unfortunately things do get gradually worse but somehow you will find the strength to help and support your mum and dad.

    At the moment he is going through a "I don't want to live with this illness any more" stage and it's heartbreaking, I'm at a loss of how to best help him 😔

    Keep posting, it will help you and you will get lots of tips on how best to cope!

    Thinking of you

    Love....Pat xx

  • Hi,

    You will find this site invaluable - the people on here live with this on a day to day basis and can probably advise you better than any GP will ever be able to do.

    Apart from that the support is phenomenal - we all look out for each other, we are here for the good and bad days. You can rant, shout, cry, laugh ......all is acceptable!

    When my Mum was first diagnosed I did find it difficult reading all the information BUT information is power and for me personally it was the "not knowing" that was more frightening.

    Be prepared, it can be a bumpy ride but we will all be here to help as and when we can.

    Keep talking, it does help.

    Good luck & speak soon.

    Kate.

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