Firstly, I must say thank you to this community for all the advise and words of wisdom. My dad was diagnosed with psp for seven years and I

[emmaapanah]

Have a feeling we are reaching the end. His salvia has thickened that he is now choking on it . Last week he slept for straight 40 hours and actually sleeps most days for 20 hours. He can hardly eat and when he does he coughs. It's so depressing to see him in this condition. I pray for him to let go and then I feel guilty for thinking this. The suffering he has to through. The other he was trying to tell me something and I told him I couldn't understand( he barely speaks) and he started to cry. I don't wish this disease on my worst enemy. Does anyone have any advise what to do with this choking

[dorothy-thompson]

Dear emmappanah

I can relate to so much you say, my husband has many of the same symptoms and is probably at a similar stage to your dad.

The coughing and the choking can be distressful and frightening but the one thing you must try not to do is panic during an episode but to remain as calm as you can. In extreme scenarios, I usually haul my husband up

to a standing position and he is generally quite quickly relieved. That's the practical solution. Of course all his food is either puréed or cut up into small pieces.

If your dad is coughing/choking on his saliva, red grape or pineapple juice is good for breaking up some of the secretions.

We also have a suction machine and I have to admit it has been very useful on occasions when my husband has been in a state and nothing else has worked.

Don't look for any medication, there probably is none, as with so many other symptoms of PSP

Kind regards

Dorothy T

[Hidden in reply to dorothy-thompson]

Dear Dorothy was interested to read about a suction machine I often feel this would be an answer to the distress of watching a chocking episode. Where did you get the machine from please? Kind regards, Grannylil. X

[dorothy-thompson in reply to Hidden]

Dear grannylil

We were given the machine by the OT after my husband was assessed by SALT.

Dorothy t

'

[Hidden]

Dear Emmaapanah,

It is unbelievably and relentlessly depressing but please don't feel guilty at wanting your father's suffering to end. I agree with nearly everything that dorothy-thompson says and advises, including the use of a suction machine which my wife is just starting to use. My only reservation concerns d-t's last paragraph; in our experience some medication can provide relief even if only to slow down this awful disease's progression. My wife uses scopaderm patches to help control her excess saliva. (Scopaderm is essentially a drug to alleviate travel sickness but a secondary effect is to dry the mouth somewhat). 1mg every 72 hours. There are other side effects which need to be taken into account but your prescribing doctor should do this.

For the past couple of nights we have experimented with my wife sleeping in a near sitting position, but with enough slope to ensure that her neck rests on a pillow with her chin up. So far it has worked wonders, no coughing, no fighting to swallow and presumably no excess saliva. We also find that the days when we are able to get a lot of fresh air she sleeps better at night.

Very best wishes,

Christopher

[Pippalina in reply to Hidden]

Dear Christopher,

Having heard about the Scopoderm patches from the community matron my GP prescribed 5mgs every 72hrs for my husband. He found that his mouth was so dry that he said that he couldn't swallow or speak. Do you or anyone else know if 1 mg is the normal dose.? This is a truly helpful site when you are struggling to cope with lack of knowledge from the so called professionals . Pippalina

[Hidden in reply to Pippalina]

Dear Pippalina,

It was my wife's neurologist who prescribed the 1mg patch and in fact advised a starting dose of half a patch to acclimatise her; and in fact we kept it at that level for 6 months. She has been on a full patch for about 4 months. 5mgs sounds a lot, no wonder your husband has trouble with it. I advise you to get a second opinion and meanwhile reduce the dose to the point where it is effective but tolerable.

Christopher

[Pippalina in reply to Hidden]

Dear Christopher..Thanks for your reply,we will give half a patch a go. Does your wife have any side effects from the patches.?

Pippalina

[Hidden in reply to Pippalina]

No significant side effects, so far as we can judge. There is a tendency for her complexion to redden - just her face - but not all the time; also the spots where each patch has been stay red after removal for a few days.

Christopher

[Pippalina in reply to Hidden]

Further to my previous blog,I think it says 1.5 patches x 5 the figures are not very clear.

[cabbagecottage]

I keep my husband raised as much as possible especially when he is first out into bed . Once I think he is more settled I lower it slightly . I have little pillows everywhere to help keep him as straight and comfortable as possible .

I keep some Robitussin which the pharmacist reccommended helps sometime and he will suck on a fishermans friend on occasions.

Although they advise you to purée my husband finds that small pieces of fruit help break the thickened saliva up . He also wear is dentures

which needs adhesive this also makes the mouth more sticky . some nights better than others .

The GP gave shim some Kwells travel sickness pills bout he started seeing things so I stopped I am interested in the Scopoderm

[jimandsharynp]

Emma, I feel your pain having lost my wife May4th this year. I was just crying this morning over the ordeal she was forced to suffer because of PSP. It is so unfair and so devastating. PSP just keeps taking, taking, and taking until there is nothing left to take. Early on after diagnosis I told Sharyn that if I could take the PSP off her and put it on me I would, without question. I meant every word. I'm ready to depart this earth at any time and always have had that outlook on life. Sharyn didn't have the excess or thickened saliva symptom, thank God. What she had was enough. I pray for you that your loved one's journey, a terrible one, will end in peace at the hand of a merciful God. Jimbo

[Croz2307 in reply to jimandsharynp]

Hello Jim, you have obviously been a very caring husband and you miss Sharon dreadfully. It is four years in July since my husband died and whilst I have rearranged my life I miss him every day. The one thing loosing a love one does is make you unafraid of dying in the knowledge that you will meet them once again. C

[jimandsharynp in reply to Croz2307]

C. Thanks I'm looking forward to that reunion.

[emmaapanah in reply to jimandsharynp]

Thank you to everyone for trying to help. As Jim had said this disease is a taker not only from the patient but also from the family. We are now trying the patch behind the ears. Hope this helps. I think it's making dad agitated. He haven't slept for 20 hours when he used to sleep 20 hours. :)). So who knows what this next chapter will bring.

[Buckeye7]

our nursing care director also suggested pineapple juice. I didn't know about the red grape juice, that will certainly try because a pineapple juice has been very effective for Peg. Jan....Buckeye7

[Croz2307]

Dear Emma...

Your father appears to be reaching the end of his struggle and the guilt you feel is what we who have lost loved ones have all felt but remember he will be going to a better place and his suffering will be over. The worst thing is that he cannot communicate his feelings I found this hardest to deal with. My husband slept most of the time for the last three weeks of his life and could not be tempted to take any sustenance. My heart goes out to you.

Love to you and your family

[Hidden]

The only help I can give you is sit and speak to him telling him to relax and deep breathing. I know it is not possible sometimes but I feel sure with my husband it helps to have a calming effect, it must be very scary for the sufferer as well as the carer not to be in control of your own body. Horrible day today for us as we have had the same problem with understanding what he is saying. Thanks for sharing, I don't feel so alone when reading this forum. X