Hi everyone,
My father has psp now for 5 years, it is the worse disease. It breaks my heart to see him trapped in that body while his mind is fully aware of what is going on. My father is getting worse each month and now he gets stiff and will freeze when trying to walk or move. He needs help to stand and walk constantly or he will fall. What medications have some of you tried for this and has it helped?
Mconnie
Dad had a special walker. U step, which was weighted. He got it too late but it was amazing. There are techniques to avoid freezing, the physics helped with this. From memory they had him marching to 1,2 1,2. No meds can help really. You just need to hold on to them all the time to avoid the falls. Sorry I have no better solutions. X
AGREE about the U step, used one for 3 years and never fallen when using it.
Tal can't keep the UStep upright. It tips side to side. I have to hold on to both. But at least it is so far keeping his legs strong to be on his feet.
Dad had a special walker. U step, which was weighted. He got it too late but it was amazing. There are techniques to avoid freezing, the physics helped with this. From memory they had him marching to 1,2 1,2. No meds can help really. You just need to hold on to them all the time to avoid the falls. Sorry I have no better solutions. X
My husband was diagnosed with Parkinson's Plus a little over 4 years ago, about 6 mos ago he was diagnosed with MSA (Multiple System Atrophy) 2 weeks ago he was diagnosed with PSP - His neuro said that why it's called Parkinsonisms because these symptoms from the other diseases overlap -- he's been on Sinament for 4 years and Azliect for about 2 years - it seems to help a bit - it keeps that mask face down a bit, his slobbering is not quite as bad - but he's broken his hip, his elbow, has been on a walker now fro 2 years since he broke his hip and we're now waiting for a wheel chair because he's now falling even with the walker - his legs are just too weak to hold him up - it doesn't help that he's very hard headed and won't listen to anyone - if he wants to get up and walk (with the walker) he will. It's no win situation. Hopefully this electric wheel chair will give him much more freedom.
i h ave a U sgtep walker but have ha dot give it up for a wheelchair indoors now - jot many eb temporary or permanent = i don't knwo except that oi am fallign less when in the chair = it was up to 40 daily b4 using the wheelchair and is now down to about 14 on a a good day = = sitlll too many btu i cannot use the wheelchair in every part of the apartment and therefore i do tend to fall ove r still = like when i have just got the cat's special treats off him int eh kitchen and fell ove r 7 times getting to him and then getign back to the 'puter her e in t he next room
the ustep si good if you can learn how to use it properly - and is good in that you have to use the brake s int he correct way otherwise it will still run away with you - as it has done with me !
lol Jill
i too will nto listen to what i am told to do and like to set off on mhy own with or without the wheelchair
Hi, Jill! So glad to see your smiling face. I don't know how you have managed with all that falling, but am glad it has gotten less.
As for falling...
Yesterday, after an unusually warm day of rain and melting snow, my guy tipped over as we were getting out of the car and fell backwards right into a puddle. I tried to hold on and fell smack on top of him - just making sure he got as muddy as possible. And he did! Wet to the skin from shoulder to ankle, covered in mud! I was glad none of the neighbors was about as we thrashed around trying to get upright. They might have gotten the idea that we were taken by a sudden unseasonable spring fever.
It was a bother, but we ended up laughing and laughing on and off all evening about it. I imagined his terror seeing me in the sky heading straight for him like the asteroid that's going to wipe us all out. I was grateful for the soft landing, and even more so that I didn't break him when I bounced.
On we go. Take care, Jill. I do love hearing from you.
Easterncedar
hi eastern cedar
it is good to hear frm you too! you are a breath of fresh air and v sensible about wha thou can and cannot do with your partner
i had a good day yesterday but had a couple of head banging episode son my return i.e. i hi32qt my forehead twice in the evening but no blood or concussion at all
i have been v lucky so far and long may it continue
i am usign a wheelchair isndie and out now as it mean si fall less when inside with it but i am still a big worry to my partner as I am reckless and still think i can od things when i cannot
lol jill
Try physical therapy if you can. LSVT Big is an excellent program to help with mobility and freezing, although this is a progressive disease, as you know, and there is no cure. We are also using CoQ10, 1800 mgs per day, which may be helping to slow the progression down a bit. I wish you strength, Easterncedar.
my heart goes out to you my husband does the same they seem to tell me there is nothing for him he is very poorly and i feel so sad i cant do anything for him
I am feeling very sad today especially reading all your posts. My heart and admiration goes out to all your darling sufferers and all you suffering carers. PSP is an insidious disease, heartbreaking, exhausting and sad for everyone involved. I would love to give you all the biggest hug.
My husband passed away 12 months ago at home from PSP. All your posts remind me of all his symptoms, falls, accidents and numerous other complications and hospitalisations. Reminds me of those lighter times, laughs together and with family and friends and also the tears that never seem to want to stop.
Keep very regular contact with Occupational Therapists, Physiotherapists they seem to be able to resolve those confusing and stressful issues. Try anything that you feel could help your patient, anything. I found we would end up in stages of high stress. But that is what it was, a new stage of the disease. As emotional as it was dealing with each progression it bought some relief when we finally got help and strategies to manage the change. I feel I did not reach as much as I could have. I hope you all do.
Thinking of you all with much compassion and love.
Julie Matherson xxx
hi juliematherson
i `m sorry that u lost ur husband to this PSP -I am in my 5th year of ti now and thinks i have th e slow sort of it as i am still here upright most of the time except for when i am flat on the floor =the balance and fallings much worse now and i can see that i w ill be in a wheelchair if i a,honest whils t still able to get around on my own and feed the cat with his b'fast and do my porridge in the microwave like i must do now
i m up now but my partner si still asleep in bed -i try to get to the bathroom in 1 piece b4 he get s up when my carer arrives at 9 am this morning as im going tho the hospice 4 day- therapy today which i really enjoy
sorry htsi is all about me and what i can and cannot do
i have been off the site for too many weeks and had a faulty keybd which si now sorted
pls stay on the sit e we do need u and
sending A big HUG & XXXXX 2 YOU
LOL JILL
Hi Jill, Please do be carefull going aroud on your own! It is so nice to hear from someone with PSP. Hear how you feel!I sometimes think that my sister is not in that awfull body anymore.. hearing what you say gives me hope. My sister can barley express herself so we don't realy know what is going on in her mind. She cannot see well enough any more so she doens't use her cell phone or computer. Oh how i wish i could hear what she wants to tell me! Love to you and be strong!
Hello from spain i need your experiences for my father with psp
Corticobasil Degeneration Advice Needed?
To help find answers to help my Father
