PSP Association
5,721 members7,811 posts

What a veritable roller coaster ride!

Thank you to everyone for the wonderful advise, helpful hints and genuine outpouring of kindness.

Last night resulted in two more falls ( I woke up for both). The freezing continued and we added a 101.5 fever to boot. I gave him two Tylenol and he went to sleep. As God is my witness he woke up this morning as if nothing happened!!! Now my head is definately spinning.

I took my super hero cape out of the dryer this morning and attacked the day with an agenda! The day has gone well. Saw the primary Dr. and while the fever broke he too thought John had an infection of some kind. Went to PT later and got more help there.

John really doesn't remember much of the past few days. A blessing I'm sure.

Feeling better and hopefully better equipped to face this daunting journey we are all / or have been on.

There really are angels-so blessed to have you all in my life.

Thank you, Alice xo

46 Replies
oldestnewest

Alice don’t you just hate psp xxxxx

5 likes
Reply

So glad your day was a little brighter. ☀️

I hope you get some idea what’s causing the fever.

Hang in there.

2 likes
Reply

Sounds promising. Keep us posted. xxxx

1 like
Reply

Hi Alice

You are doing so well despite the seeming impossibility sometimes. I have huge admiration for you.

Warmly

Kevin

2 likes
Reply

I love that you have a super hero cape! You certainly deserve one. How lucky John is to have you. Keep strong. B x

1 like
Reply

“Good news” as it were. Most likely an infection. Something that can be treated. Keep the cape handy.

2 likes
Reply

Atta girl...Keep up the good work!

Likewise I was putting my action plan in place yesterday: new bed platform to get the height right, with a bedrail, so he can get out safely on his own, a commode beside the bed so he doesnt have to crash his walker around in the middle of rhe night...and he took a header coming off the commode cuz he lost his balance trying to pull up Depend brief! Lord, Lord... So Ive repositioned the commode: if he falls he Should fall into the bed!!

Anne G.

1 like
Reply

Anne G that happened with my husband too! He fell twice and I ended up on my hands and knees cleaning up! Suppose I was lucky it wasn't worse! Not something I would recommend though.

Good luck! By the way have you tried convenes? Then he won't have to get up in the night! Makes it safer?

Marie x

1 like
Reply

Thanks Marie - Those are like the condom catheter, right? Dr. Just wrote a script for it today in case the overactive bladder med doesnt do the job...!

I can see sleep just over the horizon...Soon, soon!! 😉

Anne

1 like
Reply

I bought some Depends, but will also check into the catheter as well.

Sweet dreams when you can😴

Alice x

1 like
Reply

My husband found the daytime convene gave him peace of mind. The night time gave us a nights sleep but he tended to pull it off in the early morning and often drenched the bed. But it was still worth using.

Takes a bit of practice !!

xx

2 likes
Reply

Anne yes they are like a condom but the urine is fed into a bag. They saved my sanity! I eventually got my husband to wear one if we went to the hospital too. No worries about leaks or sometimes floods! You get a slightly different bag. Ask about them now so you can be prepared. G didn't want to know at first! So we did a trial run at home and once he realised we were the only people who knew he was wearing it he was fine. In fact I think he was highly relieved.

If your husband can get to a disabled toilet he is probably alright for now but keep them in mind. The night time ones are the way to a good night's sleep.

Hugs to you.

Marie x

1 like
Reply

Anne just read your post again and the over active bladder med might not be a good idea. There are some medications which can cause harm. I have a horrible idea they are one of them. Type the name into your browser + PSP and see what comes up. Seems a lot of Anti depressants are causing problems too. However doctors are prescribing them because they don't know about the serious side effects. So check them out before giving them to him? Check serious side effects rather than simply effects. Also add in neurodegenerative disease and the particular medication. That will help you see if there is a problem.

Marie x

1 like
Reply

You are a wealth of knowledge!! John has an enlarged prostate and take two scripts for it. Will also check out the two John is on.

Thanks!

Alice x

Reply

Alice I wish!! I knew hardly anything when I found this site. Since my husband died I have been reading up on things and every so often I read something that makes me think why are we not told? We are not told because doctors don't know much if anything about PSP! So we need to learn for ourselves and others?

You and so many on this site are doing so well. Hugs to you and to everyone who is a carer, or has survived being one!

Marie x

1 like
Reply

Ah Marie_14, how I can relate......part of the problem/challenge for me was that I had no time to research (and I am a BIG researcher), then my mind would scatter and simple solutions like using youtube for visual directions..... I only NOW think of them. Yet, I feel better learning today what no longer does me or my son much good. Weird.

It is so comforting to read that you, and probably others, are still learning....even if our loved one is NOT here to benefit.

Blessings, Margarita

Reply

Margarita I just hope we can help others through this hell? Maybe we might have more time to join the dots too? There is so much that is still unknown and a disgrace that doctors are so ignorant about it?

Marie x

Reply

Thanks Marie! I will certainly do that.... Better safe than sorry...!

Hugs xx

Anne G

1 like
Reply

Yes that's what I think too. I had no idea that some of the drugs used on people are really quite dangerous if you develop another condition They always tell you about side effects that are inconvenient, rather than dangerous. Sadly we trust our doctors and don't say no often enough? When G was in hospital he was taken off heart medication he had been on for years. Rightly so as it happens, as it can have bad effects on people with PSP. I had no idea and was ready to do battle with the doctor but he was right. So they are not always wrong! It is a lottery whether you get a good doctor or one who knows nothing about PSP?

Marie x

2 likes
Reply

Ive got a Dr's script for them as of yesterday :-). I can see that good night sleep within reach!!

1 like
Reply

Way to go!!!

Nightie night!

Alice xx

Reply

Hi Marie. Glad I read your post and Alice's as W has recently been diagnosed with an enlarged prostrate and over active bladder and has been prescribed medication for the latter. It has made him very sleepy throughout the day. I will do a check on the med like you suggested. Thanks again for your invaluable knowledge. xx

Reply

Alice does he or they know what the infection is?

Marie x

Reply

Marie, no not really. They did run a urine sample that showed a little blood, but nothing definitive.

John is " back to normal" (albeit a,little slower it seems) since Wed. morning. Simply crazy!

Alice x

Reply

Alice you are right, it is crazy! If there was blood in his urine I would query why? It might well be the source of his problems? Get some convenes then he won't have to get out of bed! You will get sleep too!

Marie x

1 like
Reply

A big hug.

Courage.

Luis

1 like
Reply

Alice,

Glad that your day went well. If it wasn’t for those occasional respites that we get, I don’t think we would survive this disease.

More good days and nights than the difficult ones,

Bobby

1 like
Reply

Thank you and to you as well. Akice x

Reply

If you haven’t added a bedrail (Amazon) and a hand rail next to the bed and around the bathroom to the commode, it is time to have this done. Not falling backward is most important and the fear of falling is almost as dibilatating as the fall itself. If he feels he has some control (holding onto the rail himself) some of the fear is eased. We found using a plastic urinal at the side of the bed took much less time than walking to and from the bathroom. John found it impossible to relieve himself while lying in bed.

Donna

2 likes
Reply

Ordered the bedrail and bought some urnals. The bars were going in with the remodel but stepped the install up. Had a number of things in place but thought I had time. Silly me, I never was in control of this horrible disease was I? Ahhh reality... ..

Rose colour glasses are officially off!

Alice x

Reply

Hello there

Please speak to your physiotherapist and occupational therapist who will arrange for bed rails to be supplied to you. You shouldn't have to buy these. OT recommended where rails in bathroom should be placed and I had to get them and fitted. But, I've been reassured that as and when equipment is required it will be supplied for Chris.

I believe this is the case across the country.

Good luck and keep on, keeping on.

AnneandChris x

1 like
Reply

Thank you! I totally forgot that an OT is suppose to come and evaluate the house. Luckily we have excellent insuance and believe most if not all should be run through insurance. Will begin my "wish list" today so I don't forget anythig. Lately I have a memory the size of a gnat!!! Love "Post Its" and lists. 😆

Alice x

1 like
Reply

How can I tell you are in the UK with your good funding? Lol....We (canada) have to pay for all the bars & equipment! ... But we get some relief on our taxes I believe...cha-ching!!!!

Anne G.

1 like
Reply

Thank you for your response. I believe it can be a bit of a post code lottery here in the UK but my district seems to be well funded.

Good luck and keep going

Annex

1 like
Reply

We also got a break in the U.S. last year as well. Believe that's all done now :-(

Reply

We installed all of our rails ourselves, (I have handy sons) using a stair rail for around the bed.and metal rails for bathroom (stock items) and shower area. The equipment was deductible from our taxes. U.S

Reply

They came quickly and fitted rails where I wanted them. All equipment I needed has come quickly. All incontinence supplies etc.

xxx

1 like
Reply

No one is in control of this disease, it has a way of kicking us in the rear whenever we get Complesant. We hadn’t had any falls for awhile and last night while sitting on the edge of the bed, John slipped off banging his head and his good hand. It was our 4th time up to urinate and I wasn’t as observant as usual. Lack of sleep effects the caregiver as well as the patient. Stay strong.

Donna

1 like
Reply

Donna, I hope your John is doing okay this morning. It does come right out of left field sometimes I'm learning.

Ah, sleep. Somedays I feel like I'm the one with the cognirive decline.

Wishing you a good Sunday- sending you lots of hugs.

Alice

1 like
Reply

Thanks Alice, he is doing fine this a.m, he needed a shower and we are in our Michigan house where the only walk in shower is upstairs. We have a large tub downstairs, and a bath chair with adjustable shower. I got him undressed and ready to slide onto the chair when he refused to get onto the chair deciding he had to go upstairs for a real shower. Thank heavens our son was here to help get him upstairs or it could have been a disaster as we are both so tired we can’t see straight.

1 like
Reply

Great news! How nice to have your son there to help you. It's a good thing we love them so much otherwise we'd smack them for being so contrary!!!

We went for a walk today. First one since our disastrous beging of last week. Half of what we use to do but he's still walking!

Hope you get a nap! Alice x

Reply

I have two plastic urinals sitting in 2 large coffee cans next to the bed. It's worked very well, knock on wood, for a long time. I keep a stack of old towels under the bed in case of a spill.

1 like
Reply

How efficient !!

But a convene gives you sleep. That was the killer for me.

xx

Reply

Hi Jean: Can there be an issue where the nurse can't fit a condom catheter/conveen if there is penile retraction? WARNING: DON'T READ MORE IF YOU DON"T LIKE GRITTY DETAILS: ...there...got that out of the way ;-)... So hubby tends to "turtle" and I've been working to "keep it out" particularly when I shower him, because there needs to be 'something out there' for the convene to take hold of, right?

thanks!

Anne G.

Reply

Yes. I'm afraid you are right. I think that might have been why Chris' was easy for him to pull off in the morning. There have been detailed conversations about this in the past - more gritty details !!!

Some people could not put one on because of a retracted penis. I used to put Chris' on. I found some carers are just not good at it.

Worth a try though, Anne

love, Jean xx

Reply

Thanks :-)

Reply

You may also like...