BEST POSSIBLE

[edkor]

What is the best med to combat psp?

[NannaB]

laughter !

[Georgepa in reply to NannaB]

Wise words !

[peterjones in reply to Georgepa]

i'll drink to that matey \\\\ but if you find out please let me know peter jones queensland Australia psp sufferer

[Heady in reply to NannaB]

Hi NannaB, just told S about your medication for PSP. He totally disagrees, says it hurts far to much!!! All his bruises are moaning, in some places they must be three deep at the moment! So perhaps the laughter should be just for us, dealing with these "poor olde soldiers"!!!!!!!!!

Lots of love

Heady

[peterjones in reply to Heady]

heady and nanna b well mates poor old s and hes bruises we get no sympathy do we s

but as long as someone gets a good laugh out of us we don't mind do we

and what about my old mate colin did you have a good Christmas mate I certainly hope so I went out for Christmas dinner IT SAVED ME COOKING HA HA WE HAD A GREAT TIME THE PRAWNS WERE SO BIG WE HAD TO PUT A SADDLE ON THEM AND RIDE THEM IN ON OUR PLATE MATE WELL IT LOOKS LIKE THE PAIR OF YOPU ARE BGETTING LOOKED AFTER VERY WELL SO I WILL SAY SEE YER TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER AND A HAPPY NEW YEAR TO ALL 4 OF YOU

[NannaB in reply to peterjones]

Of course you get my sympathy Peter Jones but I also laugh with you, not at you. I can just imagine you riding a prawn. I hope you enjoyed your Christmas. It sounds as if you did. We've had 2 Christmas celebrations as our sons couldn't all make Christmas Day. The second was today and 4 are staying over night and are tucked up snug in bed. Colin put thumbs up when I asked him if he enjoyed the day. As two sons were here, we managed to get him upstairs for the first time for several months. Our dining room is now upstairs as Colin sleeps in the original one. The stair lift came in handy as we used it as a dumb waiter, loading up a tray and sending, plates, food etc up. Our grandsons thought it was great and of course had lots of rides as well. All in all it has been a better Christmas than I anticipated a few weeks ago.

Happy New Year to you and your dear lady wife.

Nanna B

[peterjones in reply to NannaB]

hi nanna b and colin how are you doing mate ok I hope I just wanted to wish you and nanna b all the very best for the coming new year and ive got my thumbs up now mate what about you mate take care see yer peter jones queensland Australia psp sufferer to mate

[NannaB in reply to peterjones]

Hi Peter Jones, our good wishes to you and your dear wife as well. We hope you manage to stay upright and remain bruise free in 2015. Where has this year gone? It has flown past. We had a good Christmas over several days as all the boys couldn't get here at the same time. Over 4 days there was lots of laughter, singing and game playing. Colin was even humming along with the singing and thumbs went up a lot. They also went up when I read your message to him. So may there be many more messages in 2015 Peter Jones. Happy New Year and stay safe.

Nanna B x

[NannaB in reply to Heady]

Ouch!!!!! No, I don't expect he feels like laughing sometimes. Colin's falls are rare now as he can't walk alone but he laughs a lot at my attempts to help him, especially when using the loaned equipment. I do get myself in awkward situations which he finds highly amusing as I get more worked up. Eventually we are both usually laughing.

I hope S manages to stay upright enough for his wounds to heal or should I say wounds on wounds.

X

[Joeglad]

To be blunt there are no meds at all. Some people say they have a short lived improvement with various things but they don't last and may be the placebo effect anyway. PSP is incurable and progressive and all that can be done is help the sufferer be as comfortable and as safe as possible. None of us know the future and none of us can predict how quickly or slowly this disease advances. Take each day at a time and try to lay down happy memories.

[Hidden]

Dear Edkor, there are medications to combat some of the symptoms of PSP, some more effective than others and, in the nature of PSP, those that work well for some sufferers don't necessarily do the same for others. For example, my wife Roisin opted for a PEG to combat her inability to swallow enough food, solid or liquid, to sustain her weight and strength. It worked very well. Her problem with excess saliva was kept under control with Scopaderm patches. The problem of her chin resting on her chest, thereby constricting her ability to breath and to swallow, and to view the world around her, was substantially resolved by the use of botox injections, and the same approach was being applied to the rigidity of her arms.

I believe Joeglad is correct to imply that PSP is a death sentence - at the moment. My wife and I lived in hope that, either by accident or design, advances in medicines would at least arrest the decline in PSP sufferers and even prevent it but we both knew that the benefits would be felt by another generation. But I am certain that Roisin wanted more out of the life that remained to her than to be kept comfortable and safe. The challenge was to find ways of keeping her intellectual and social life as stimulating as possible. Because Roisin could not speak or write during her last year, it is hard to know how successful we were - "we" being myself as her carer, our son who came for a few days from Madagascar every two months, her care assistants who came in twice a week for a few hours, and our friends who were invited or just dropped in regularly - but everyone would say that because of her undimmed mental alertness she was always an important presence in any group or conversation and she continued to enrich all our lives right to the end. And NannaB is right to prescribe laughter (or in my wife's case a sound that passed for laughter).

Sad to say that "the "end" was a common cold caught from me which became in Roisin a bronchial infection with which the enfeebled muscles that powered her lungs were unable to cope.

This is not the response you were hoping for but I hope it helps.

Christopher

[cabbagecottage in reply to Hidden]

hello Barnacle . so well explained I am sure that I'll be a big help to Edkor .

my mother had a peg fitted when she had a stroke and she also had no problem with it .

I am glad Roisin had some respite by using the patch and having the Botox .

my husband John suffers much the same continually drooling , I wonder wher it can possibly all come from on occasions . we tried the patch behind ear but it gave him the most awful hallucination , it was only on for a few hours and I could see he was in trouble. he couldn't control his mouth tongue at all and and I coulnt get him onto his commode because he had a room full of people"" looking at him . I couldn't speak he told me they could heat me . That lasted for three days .

I will ask about the Botox . his head is also dropping forward into his chest . do you know of any aid that can help this , I wrap a small towel around his neck .

I am quite neurotic if anyone visits who has a cough or cold . we would b in big trouble if I Picked it up as well .

we have carers night and morning but I do nearly everything myself , . I think I would stop having them except o a afraid I might become ill and not have the back up . it can take such a long time to set things in motion otherwise .

[Hidden in reply to cabbagecottage]

Hello Cabbagecottage,

Your husband John's reaction to the saliva patch is not uncommon and confirms the point that what works for some people does not for others. Have you tried positioning the patch elsewhere, further away from the sensitive areas behind the ears; for example on the upper arm or in the small of the back? Roisin's scopaderm caused skin irritation wherever it was but particularly behind the ear, so we experimented. With Scopaderm you are supposed to change the patch every 72 hours, at the end I was changing it every 60 hours and leaving the old one inplace for 12 more hours. Incidentally the damaged skin responded to mild cream. It was also necessary, in line with the instructions, to change the patch if it moved, as sometimes happened. We got over this byloosely covering the patch with a piece of elastoplast.

What do the doctors say about John's reaction to his patches?

Regarding his neck, I tried using neck collars but Roisin hated them. Nevertheless, after the botox had proved its value, she did agree to a daily period of about one hour wearing the collar to help "retrain" her neck muscles.

The first botox injection made little difference. The neurologist then increased the dose, still a weak one, and this worked; Roisin's head still tended to lower but not by much. It was also explained to us that botox carries a small risk of interfering with breathing and exacerbating swallowing difficulties. Something to do with over relaxation of muscles as a result of relaxing the neck muscles. But Roisin had no problem of this kind.

A year ago we both had flu vaccination without a problem. This year I seemed to have a reaction in the form of a cold and cough but no temperature. This what I passed on. You are wise to be very wary of people with colds and of crowded venues.

With best wishes,

Christopher

[cabbagecottage in reply to Hidden]

I didn't think to try placing it elsewhere . for the drool we first started with Kwells or atropine eye drops but even they caused him confusions so wasn't surprised when the same thing happened with the patch . he had a similar experience when given Digoxin , he also has Atrial fibrillation which he takes. beta Blocker and Warfarin .

these drugs affect him immediately . I makes me nervous of any new medication . he had only ever been diagnosed as Parkinsons and that became a problem 10 years ago he is now 80 . of course looking back can see we had both been struggling with it for many many years before .

he has taken Sinemet from the start and used th Neupro patch which we recently stopped at the same time reducing dose of Sinemet , I have never ever notice the benefit of either in fact after taking the Sismt switches off for a few hours . it's a minefield taking these meds .

of course how can you tell the difference between side effects of drug or progression f the illness.

since stopping the patch he has had less mucus build up and choking at night and no where near as much myocolonic jerks .

one of the reason for stopping the patch was his skin sensitivity he had a period of five years with BULLOUS PENTHAGOID which brought up large dense blisters .

I am wary of the skin problem Although he is bed or chair bound I use hoists in living and bedroom I only use a pad for him at night to save me getting in and out of bed and during the day if I go out for over and hour . he isn't incontinent but immobile . I have to keep my wits about me to keep the sore bottom away .

I haven't had the carers during the day mostly becUse he cannot go to toilet to order , I try and keep things as normal as possible , whatever normal is now of course .

The only thing they do that o find difficult is hoisting him into his bed , I don't have any trouble getting him out . I have come to the conclusion that I like a challenge "" lol . would never have thought it possible for me to cope as well as I have . don't know for how long though .

when I mentioned CHC they said he would comply . the same thing happened when my mum had her strike she couldn't do a thing for herself , was peg fed and ninety . They offered it the week she died and was curled up and weeping in her bed . That should read COULDNT !!

I am so sorry that the Flu jab had a bad result for both of you . maybe it was coming as you had the jab.

the carers usually greet us with . Chirpily asking what we been doing and have we had a lovely day , what a stupid question lol. we all put a brave face on but it can be very difficult sometimes .

my very best wishes for you for the new year 2015 . X

[Heady]

Hi Edkor, NannaB is right, laughter! I would like to add, being positive and physio! Lots of love and understanding, and the "odd" glass of wine!!!

If you find anything else, please let us know.

Have a peaceful new year!

Lots of love

Heady

[shasha]

on the positive side i have found that amantadine has helped a lot - i have been on it since january and it made a big diference to me and my husband, who is my carer... it meant that he could go out and leave me alone for several hours as i was able to get to loo on my own albeit with the hellp of a walker but it is true that in general PSP does not respond to any of the parky type drugs

[jimandsharynp]

Sinimet works for a very, very few people for a short time. Amantadine works for some folks. There are no drugs that come close to helping much. PSP is a disease with no meds for the disease itself only for the symptoms. Nothing I've read (I explore PSP on the computer a lot) will slow the normal process except keeping active with routines for mobility and speech. Unfortunately there are no "magic bullets" for PSP. Just stay strong and take one day at a time. Jimbo