My mother with PSP

My mother , a 69-year old lady was diagnosed with PSP some five years ago.We have been giving Amantrel(100mg) capsules twice daily, but there is hardly any improvement, rather gradual deterioration exists due to which her right leg and hand are totally rigid and stiff that she can't move them, her speech got highly slurred , and she develops choking sensation while eating and drinking.

Given the above symptoms , does any one help us with effective medication and diet supplements.

6 Replies

oldestnewest
  • Based on what she is going through, it sounds like good ole' PSP. and there really are no chemical treatments that I have found ie drugs supplements etc that reverse the order of the progression. Others have seen a slight slowing in some of the symptoms and with this, I say more power to them. Does she have Parkinsons? which I would think would be the reason for the freezing of the limbs. My husband does show signs of PD in that his right pinky has a palsy and his right foot will freeze to the floor when trying to step. He used to take levadopa but have not seen any improvement with that so we don't take it anymore. I say exercise . It may not reverse or even slow but it does help the mind and the other parts of the body to maintain some homeostasis.

    Good luck to you and your mom,

    AVB

  • Hi santoshbulusu

    I'm sorry to say I'm with AVB on this.

    Many things have looked promising and research done (including quite a few supplements like CoQ10 and Methylene Blue and Turmeric) , but the results have always been poor.

    I thought Amantral was an antiviral medication. Did the Dr say why they were prescribing that?

    I'm sorry I can't add more.

    Warmly

    Kevin

  • Hi, sorry to hear about your Mother, as you will know there is no known cure. My wife is 68 yrs with a totally locked left arm for past three years and unable to walk, the message from the brain unable to activate her left side. She was diagnosed with CBD the even rarer form of PSP and just as horrible. She takes no medical pills etc. But eats healthy but not very much, all foods have to be fork Mashable to leasten the risk of chocking.

    Also watch out for bed sores, any slight redness in an area is a potenial risk and belief me you don't want a bed sore to break down, cream the bottom well with a barrier cream the best we have come across is 'MediHoney'

    All the very best in your care, and enjoy each other's company.

  • My mum has CBD and it also affects her left arm and hand. We have been given a splint but the neuro team to try stop it contracting any further as her fingers were stuck in her palm. She is semi mobile that can walk sometimes with two people each side.

  • Based on what you're describing, this sounds more like CBD than PSP. Has she seen a Movement Disorder specialist? They are neurologists who specialize more in the Parkinsonism family of diseases. Unfortunately none of these diseases have very good treatment options.

    All the best,

    Ketchupman

  • My wife 65 is in a very similar place ....right leg is turned out ...she can barely walk with out falling and right hand is rigid but she can still pick up food and eat it (no utensils ) .We find thick juices,ie naked juice, also shakes w/whey, ice cream fruit blended and small bites of meat ...steak ,chicken are easiest ....for her to get down......also chocolate .pasta, and cooked veggys are the worst for her to swallow ...go figure ...this disease is devastating in all facets.

    We had a brace made for her leg that keeps it flat on ground and stabilizes her foot at temporary intervals if she wears it .. she does about 2 hrs a day and I guide her on a 1/2 mile walk ...about 40 mins a day ..It makes her tired , gets the blood flowing and is a good "get me out of the damn chair " event . We live in the Denver, co area and I would be glad to give you the name of the dr. that made the brace through Kaiser Medical . ...jeff....good luck

You may also like...