Is there any point ...: Giving a 5 year PSP... - PSP Association

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Is there any point ...

Althea-c profile image
Althea-c
β€’20 Replies

Giving a 5 year PSP sufferer high blood medication when there is literally so much else they can die of.

I would like to hear your opinions please.

Althea πŸ’›πŸ™

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Althea-c profile image
Althea-c
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20 Replies
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NannaB profile image
NannaB

If medication helps with symptoms and reduces suffering, then yes, it's worth giving. I don't know what high blood medication is or what it's being given for but I know medication my husband had didn't extend his life at all but did make him more comfortable : eye drops to relieve soreness, medication to reduce excess saliva so he didn't choke on it, medication to help with pressure sores, medication for an enlarged prostate to make him more comfortable and urinating easier.

When he finally decided he didn't want to live any longer, all medication was stopped, also his decision. He wasn't in any pain and didn't have pressure sores or anything else to cause discomfort. He let me and his GP know his decision with thumbs up and down answering questions. He died very peacefully by refusing food and liquid.

If medication is going to help the one living with PSP, live more comfortably to the end, as we don't know when the end will be until they get there, then I think it's worth it.

X

Althea-c profile image
Althea-cβ€’ in reply toNannaB

I agree that all the meds you mentioned have to be used to ease the life of sufferer but I'm still not convinced about HBP meds.

Althea πŸ’›πŸ™

NannaB profile image
NannaBβ€’ in reply toAlthea-c

Hi Althea, I didn't put the word Pressure in when I read your post so thought the meds may be for anaemia or something, which could make someone feel better. I see your point now and as medication for high blood pressure can also have side effects I agree with you that they may not be a good idea. I suppose the medics have to cover themselves. If they know someone is suffering from HBP and don't treat it, they may be liable if it is seen as a contributing cause of death. Have you spoken to the doctor about it. C was found to have a very enlarged prostate and various tests were carried out. When I was on my own with the specialist he started saying that it was possible he had cancer but to confirm it the tests would be even more invasive than those he had just had. He then dithered and I helped him out by saying, "Are you trying to tell me that PSP would kill him before prostate cancer would so it's not worth continuing with tests". He said yes and thanked me for making it easier for him. The problem would have been if cancer had killed him first. When C returned to the room, we discussed it and he agreed not to have further investigations.

If you haven't already had one, maybe a frank discussion with the doctor would help.

Best wishes.

X

Althea-c profile image
Althea-cβ€’ in reply toNannaB

Thank you NannaB, you always give sound advice. I will check with Doctor first. Much love πŸ’›πŸ™

Althea-c profile image
Althea-cβ€’ in reply toNannaB

Crazy that we have to make Doctors lives easier for them. Barry's GP hadn't heard of PSP until I told him about it 2 months ago.

He had received the Neurologist report sometime before but I guess he didn't bother to read up on the condition. πŸ’›πŸ™

Kevin_1 profile image
Kevin_1β€’ in reply toNannaB

Hi NannaB

I read your post to Liz

It is so clear and it has a great truth in in simplicity.

She and I shed a tear for you both.

We wish you all that you need.

Warmly from us both

Liz and Kevin

XX

NannaB profile image
NannaBβ€’ in reply toKevin_1

Love to you both.

XxxX

Kevin_1 profile image
Kevin_1

Hi Althea

Very good point.

Liz and I talked about that when I read your post to her.

She really wants the PSP to hurry up and do its work, but she thought having organ failure or a stroke a less attractive option.

Warmly

Kevin

Althea-c profile image
Althea-cβ€’ in reply toKevin_1

Liz is a remarkably brave woman to consider all that PSP has in store for her.

With all I have read about the slow progression of PSP I'm not too sure I want that for Barry.

I am praying for a heart attack.

Much love to you and Liz. πŸ’›πŸ™

Yvonneandgeorge profile image
Yvonneandgeorge

I think the medication helps them with what they have, high blood pressure, diabetes, depression, makes that part of their illness easier to live with xxxx

Althea-c profile image
Althea-cβ€’ in reply toYvonneandgeorge

Thanks Yvonne. πŸ’›πŸ™

doglington profile image
doglington

Chris had taken medication for HBP for years - because he had a heart attack at 35. When he was diagnosed with PSP we agreed to stop all meds but monitor his bp. [ which was not high] The only meds he takes is Sinemet. Agree, as aways with nanna B. I think the fewer the better but treat any pain or symptoms which appear. Chris BP is low now.

love. Jean x

Althea-c profile image
Althea-cβ€’ in reply todoglington

πŸ’›πŸ™

Julieandrog profile image
Julieandrog

Hi

Rog was sent a well man check appt two weeks ago! Declined !

Julie

Althea-c profile image
Althea-cβ€’ in reply toJulieandrog

πŸ’›πŸ™

JantheNana profile image
JantheNana

Althea,it may depend on how high his blood pressure is and if it is causing any symptoms.Our GP has had both my husband(now deceased ) and me off of blood pressure meds for several yrs now due to the fact that as we age,blood pressure can be acceptable at higher limits than when we are younger.That was his take on it ,anyway,and I have read that elsewhere also.Another factor in this,at least for Don,was that the meds contributed to his dizziness and imbalance,and he was falling a lot.Don't know if this helps or not -it's just my opinion.

Althea-c profile image
Althea-c

My dear, your opinion is accepted. Every bit counts. I have decided to ask his Neurologist which I probably should have done before posting on PSP. Much love, Althea πŸ’›πŸ™

Flemingc profile image
Flemingc

Slightly off point but my mother had Alzheimer's and passed four years ago. Doc prescribed high cholesterol meds and HBP meds for her when she was far advanced. We made the decision to remove all meds except those that provided pain relief and made her comfortable like anti-anxiety.

Althea-c profile image
Althea-cβ€’ in reply toFlemingc

I think you were quite right to have done so. Althea πŸ’›πŸ™

Because my guy blood pressure is now on the lower side the Dr had cut his BP med down to .25 mg and we will start taking them every few days and eventually stop taking them. My understanding is most PSP people tend do have lower blood pressure even they had high BP before.

Dee

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