Medication for PSP.

[chopra123]

Hey hows your daily lifestyle and what medicines are you on for PSP. is it helping? xoxo.

[dorothy-thompson]

Hi Chopra

my husband is in the 8th year of PSP and our daily life style is almost akin to looking after a baby again and we are both 73!!

My husband is not on any medication for PSP because there is none. He is however

on a paediatric dose of Quetiapine daily to curb his aggressive tendancies and it I working.

I also think that he has plateaued at the moment or perhaps we are all getting used to to it? - what am I saying??? H ow can we get "used to it"

Take care

[chopra123 in reply to dorothy-thompson]

hey dorothy, maybe it was a good move that you did not start any medication for PSP,as the side effects are much more. Loads of love and power to both you and your husband.

[jillannf6 in reply to chopra123]

good on you dorothy

i was tried with co careldopa and hten amantadiien but neithe rha dmuch effect so stoppe dhtem both

(but am sill falling more htan 20 times daily)

lol JIll

[Peter3 in reply to dorothy-thompson]

Hi Dorothy,

Pleased to hear at last you have managed to get some alleviation from your husband's aggressiveness. Must be a bit of a relief for you.

We have been offered some extra help and when I was asked what did I need I really had to think hard. The reason for not being able to give a quick answer is just as you say we get "use to it" Its very much part of today's life.

Best wishes

Peter3.

[jimandsharynp in reply to dorothy-thompson]

Dorothy, I can relate to the getting use to it. I'm finding that as time passes I'm becoming more at peace with being a caregiver. Even more "into" caregiving than earlier on in the disease. It is like looking after a child/baby for sure. My Sharyn is now totally immobile but she can stand with assistance to transfer from chair to bed or potty. No steps though. Sleeping 14 to 16 hours a day. No aggression or other changes in her. She's the same beautiful wonderful Sharyn in a PSP body. My heart goes out to you women who are caring for a man/husband. Dealing with a woman is hard enough for a man but dealing with a man must be very difficult for a woman. However, we do it all in love.

Jimbo

[peterjones]

hey chopra are you for real mate hows your daily lifestyle mate have you got psp or are you a carer or what\\\ there is no psp medication my friend as Dorothy said\\\ and my daily lifestyle is to wake up in the morning another day of falling over and tryihg to get up again like many others who have this terrible illness & lots more ]]] peter jones queensland australia psp \sufferer

\suffreraustralia

[dorothy-thompson in reply to peterjones]

hi peter jones

I know what you mean about waking up to another day, you just don't know how it is going to be do you?

I'm sorry that you 're having so many falls, I hope they are not too serious for you. Do you have any carers or help in any way?

Regards

Dorothy T

[peterjones in reply to dorothy-thompson]

nk you for your concern so far I have a broken rib and cut my head open 3 times a where i have fallen and then fell in the same place on my elbow again and my elbows are a bit of a =mess but they are healing just wants a bit of time mate I have purchased some elbow guards that the skateboarders use\ not that I will be doing any skate boarding for a while I find them quite good myself\\\ no mate I do not have carers in I had them in when I cut my head and they dried me off after a showering I consider myself to be I good position with psp and fortunate I can still

get around with a walker\\ and my swallowing is not crash hot and a few other things as well but I am ok at present with my good wife of 57 odd years who feels more than I do when i fall over but I do my best and i do not want to worry anybody at present I have got admssion to respite under high care whenever I want or better still that my wife wants me to go into there to give her a break which I would do gladly its not much fun looking out for someone all the time is it mate well mate life goes on good luck to you dorothy take care peter jones queensland ausrtralia hows the heat mate ok !!!!! psp sufferer

\\

\\\\

[flicka in reply to peterjones]

Oh Peter Jones I send my love. You are a one off. Please give my best to your wife. Flicka x

[peterjones in reply to flicka]

hi flika will give your best wishes to my wife thanks for your kind words mate

take care of yourself peter jones queensland Australia psp suffrerer

[chopra123 in reply to peterjones]

Hey peterjones, my grand dad aged 70 suffers from PSP. He has been on syndopa since some 7 months but it is not helping him. His falls are increasing. i have heard a lot about coq10,maybe you should give it a try? lots of love and stamina to u!

[jillannf6 in reply to chopra123]

hi i qm now trying coq10 and turmeric - i hav ebene fallgin lessl than i was b4 so no tsur eif it si these that r doing me good

willl keep u posted

lol JIll

[Honeymaker]

My dad is taking tumeric after reading about it here and elsewhere. It's helped a lot.

[chopra123 in reply to Honeymaker]

Hey honeymaker thanks a lot for sharing,how much tumeric does your dad consume and how? best wishes for him.

[jimandsharynp in reply to Honeymaker]

Could you be more specific. Helped in what way? Thanks

[Honeymaker in reply to jimandsharynp]

I answered further down the thread. He was separating from life. Confining himself and stopped speaking, watching tv, listening to music etc.

1 x 400mg a day and his sense of humour is back and he takes part in life again.

[SWISS_MISS in reply to Honeymaker]

Hello Honeymaker...Your post about Turmeric is one of the reasons that I have started my wife on it. She takes the Natures Best product, Turmeric 10,000mg (500mg of extract) One tablet per day. I will monitor over a period of 2 months to see if there are any improvements in her. I see you are in the UK as we are. Have you ever been advised to see a specialist called Karen Ling.?

[MOMBCD1 in reply to jimandsharynp]

to jimbo

please please, make you answers double spaced so I can read them

barbaradaughtry

[e-mail]

[MOMBCD1 in reply to Honeymaker]

to honeymaker

how much tumeric does your father take?

[jillannf6]

Hi

I have heard that it's good too

How does you. Dad take it?

Lol,Jil

[Honeymaker in reply to jillannf6]

400mg in capsule form daily.

[jillannf6]

I have tried co q10 but it's c expensive to buy inappropriate quantities as as advised

Loljill

[chopra123 in reply to jillannf6]

yes i have heard its expensive..but if things improve its worth giving a try as my grand dad has been complaining of a lot of dizziness and his mobility has reduced quite a lot recently,maybe these are the side effects of syndopa that he has been taking.. do you suffer from psp? lots of love to u.

[jillannf6 in reply to chopra123]

yes i have psp and am lookin for anything which jmight help reduc ehte falls]

lol JIll

[Honeymaker]

He's been taking tumeric (400mg a day) for 3+ months now and they've made a massive difference.

He was becoming very secluded, taking himself off to a room to spend all day alone. Not interested in tv, speaking books, radio, conversation or company. He struggled to speak, was confused and really very difficult.

Tumeric turned all that around and his sense of humour has come back.

[jillannf6]

Hi

How does h taker the,turmeric ???

Loljill

I,have. PSP

[jimandsharynp]

Chopra123, There are no medicines for PSP. There are meds that help with the symptoms though. PSP has no know cause, is progressive, and there are no Medicines to cure or even slow the disease. If there were it would be recommended by all neurologists everywhere. Some say that CoQ10 can help but again it is not a cure or known to slow the progression of PSP. However, others taking CoQ10 do not receive a benefit. PSP is such an individual disease in some respects. I wish there was a "silver bullet" medication but there just isn't.

Jimbo

[chopra123 in reply to jimandsharynp]

Yes we all wish there was something,unfortunately there isnt. All the neuro here in India suggested taking the medicine syndopa as it would help...what do the doctors recommend there?

[rajatbh in reply to chopra123]

My dad was diagnosed in Feb 2013, nothing works. There is no cure/medicine at all. Syndopa is recommended for 3/4 month and you have to stop after that, that too has side effects.., I would suggest to try some homeopathy medicines. That would help in swollowing food etc.. The disease name itself is progressive - slowly slowly it would get worse. I had seen pain in my dad eyes..

[chopra123 in reply to rajatbh]

Sorry to hear that,i hope it gets better for our Psp patients. We have tried little homeopathy here and there,but havent seen any large difference. Are u from india too?

[shasha]

I take modopar foor pain in my neck and am have just started on amantadine which has def helped my 'shuffleing ' and my voice is stonger too but i know it is unlikely to last

[chopra123 in reply to shasha]

thanks for sharing shasha,hope the medicines work for u.

[jillannf6 in reply to shasha]

hi shasha

goood on you fr tkaign the maantadine and madopar - if htey r workign fo ryou hten stay on htem1

lol JILL

[shasha]

i think i may try turmeric too !!

[Sharon637 in reply to shasha]

Hi Sasha, please let us know if you try the tumeric and how you get on with it. Will be interesting to see if it helps with your particular symptoms. Keep us posted! xx

[shasha in reply to Sharon637]

i have just ordereed some on line so will let you know...

[chopra123]

is nobody on Generic Sinemet for PSP?

[shasha in reply to chopra123]

i was on sinemet when i was dxd with pd but it had no effect whatsoever

[jillannf6 in reply to chopra123]

i ws on cocare;dpopa which made not difference so i stoppe di t gradually

lol JILl

[Auddonz in reply to chopra123]

My husband is on Sinemet chopra 123 and it has made a big difference. Hoping it continues.

[easterncedar]

The neurologist had my guy try sinemet and amantadine, neither helped at all. It varies for each individual, as is often noted here. I like to imagine the coq10 is helping, but the psp continues to advance. He takes 1800mgs a day. We will find out about the clinical trial results in three weeks and will surely post as soon as we have news. I'm glad amantadine has helped you, Shasha! A little good news. As Peter Jones says, we just wake up and deal with it every day. the best to everyone here. Easterncedar

[jillannf6 in reply to easterncedar]

hi wha t wer ethe result sof the trials?

lol Jill

[easterncedar in reply to jillannf6]

Hi Jillann, I just saw your question. I did post the results when we got them.

The clinical trials of CoQ10 for PSP that were run at the Lahey

Clinic in Massachusetts showed NO statistical proof of benefit, even at very high doses. Our

neurologist, who was running the experiment, was very disappointed, but said that if we

thought my guy was getting some benefit, we should follow our own view. And so he is taking

less than he was before, but we are carrying on. Love and Peace, Easterncedar

[jillannf6]

Me too i shall try turmeric

Lol jiłl

[Sharon637 in reply to jillannf6]

Let us all know when you try it, we are all waiting with baited breath for you and Sasha to try this and let us know the outcome. How fantastic if you find something that helps!

[jillannf6]

nope no meds fo rit and only supoplements like co q10/ turmeric and poss coconut oil

lo;l jill

[chopra123 in reply to jillannf6]

Hope things get better for u

[Heady]

Where can you buy turmeric in England? I have read that people taking Warfarin ( as S us) can not take it. Anybody know the answer?

[jillannf6]

hi all

i am flalign a little less now on a good day 6 titmes )(was 20+ DAILY)E

btu nto sure if it is the coq10 0r ther turnmeric

one is much cheape rthan the other

lol jill

[MOMBCD1 in reply to jillannf6]

jillian

please answer me 'please.

[jillannf6 in reply to MOMBCD1]

hi MOMBCD1

IO SHALL ANSWER YOU BY WORD

DOUBLE LINE SPACING ET AL

LOL jiLL

[MOMBCD1 in reply to jillannf6]

thank you jillian I will double space

[jillannf6 in reply to jillannf6]

and myh jmood is bette roo- i am not crying as much ove rnothing

lol JIl

[edkor]

The spaces take getting use to but I will try LOL !

[edkor in reply to edkor]

I THINK THE CAP LOCK AND DOUBLE SPACE ARE GREAT LOL!

[edkor in reply to edkor]

YUP!

[edkor in reply to edkor]

MY EYES ARE GETTING WORSE . (PSP)

[jillannf6 in reply to edkor]

good fo rou edkor1

lol Jill

[MOMBCD1]

jill

I take tumeric and it does not work for me My speech is still all but gone I hope it helps you with your speech

barbara daughtry

[e-mail]

[mattgo]

Hello everyone. My father has PSP and I have been scouring the internet for information. This is a great site, and you all seem like great folks. My father participated in the CoQ10 trial in Boston with little or no results that he has described to me. This spring he was in the TPI-287 trial but we are still not sure if he was on the placebo or not. Some days he is great and other days not as much. He still can get around with the walker and still can speak pretty well. He was diagnosed about 3 years ago now.

I found an interesting post on "Earth Clinic". I have ZERO idea if any of this stuff is justified or not. We are going to try the lysine I think and see what happens. Do any of you have any input? I am convinced the answer is out there and am unwilling to give up.

ted.earthclinic.com/cures/p...

Thanks Matt