end of PSP

[tomphenry]

Our Dad has PSP, and he recently suffered a fall where he sustained a fracture in his neck and two in his pelvis. Prior to this fall he was able to ambulate with a walker. Now, he is wheelchair bound and the contractures and spasms are really setting in on his legs. In addition, the far away look is increasing and he is having lots of trouble finishing thoughts and speaking them. Anyone else seeing similar things with their loved ones? It is very hard to watch, and we are hoping hospice can start helping.

[dllera]

I am so sorry to hear of your Dad's fall. Unfortunately - what you are experiencing now is pretty typical with PSP. Maybe a little sooner since he fell but very typical. I don't think it's quite time for hospice but of course - I am not there. My dad always had spasms and they spread from the legs to the arms etc. Speech will get increasing worse and trouble finishing thoughts does not mean that he is not cognitive but the thought to speech is an impaired brain function . The far away look has to do the gait palsy in the eyes which is typical. We used a tilted wheelchair for my dad - it was really helpful. If hospice does get involved - you should be able to get one through them. There some medications that can help with the spasms but balancing between alertness and those can be challenging. Sinment can help and we used small doses of clonazepam to help with the spasms. DO NOT let hospice give your dad lorazepam - it actually makes nureological issues worse. The throat muscles may be your next challenge. If your dad is still able to take food by mouth but is choking - try chewable papaya or pineapple juice because that helps with too much saliva and thicken water etc.

Ping me anytime - I have lots of tips and tricks - my dad had PSP for almost 10 years. Are you in the States?

[mthteach in reply to dllera]

dllera, My spouse has had PSP for 3 years. He is starting to make clicking sounds at night. He said he thinks it is the saliva. He does have some aspiration when he drinks liquids. could the throat spasms cause this noise. He has been complaining of his throat hurting for years.

Hospice has already started seeing him. They give him Tylenol 3 with codeine for throat pain. I have never heard of lorazepam being bad for PSP patients. Hospice wanted to give him Oxycontin for pain, and I told them that I did not think it was a good idea.

Hospice has been able to get him the supplies we needed, wheel chair, hospital bed, etc... Our BC/BS was giving me trouble trying to get him even a bedside commode. They got him a walker and told me he could walk to the bathroom. I dropped him about 3 months after they got him the walker. Now it is about a year later and he uses a wheel chair most of the time. He can still walk, but after 7 stitches in the head, it scares me when he walks. He is not as stable as he was before.

[Esra in reply to dllera]

Dear Dlera

Thank you so much for your information.

My mom regret has the same disease. Recently, she doesnot want to sit her chair, she wants to sit on land. She has a spasm( not too much) In addition she has a sleep issue. To eliminate the sleep issue, she is taking bromazepam( brand name: lexotanil).

As I read you above mail, lorazepam is not recommended for a neurologic patient. Do you have any tips for my mom unwillingness movement, and Sleep issue.

Many thanks

Esra

[Esra in reply to dllera]

Dear Dllera,

Hopefully you and your father are fine.

I need your help about the spasm problem. My mom is a PSP patient.

 After reading your tip, we have started to use clonazepam in helping with the spasms. Unfortunately, after using it, we need to increase dosage of clonazepam. Actually, I am wondering that is it normal case for using this medicibne. As you know, the drug is a very strong medicine and addictive. So now, could you please share with me your experinece about this drug? And also please please inform me the max dose of this drug? And finally, do you have another suggestion for reliefing the spasm.

Many thanks

Esra

[NannaB]

So sorry about your dad. What you described is how my husband was earlier last year, without the dreadful injuries your dad sustained, but unfortunately he has progressed since then.

Where do you live? We are in the UK and the hospice became involved when my husband was still walking and talking. He has been attending the day centre since 2014 which gives me a break to do what I want. They have helped with getting equipment and Continuing Health Care finance. Any medication they have suggested has to be approved by the GP but nothing he tried helped and caused side effects so now he doesn't take anything. He doesn't have excess saliva any more so the medication he had for that has now stopped.

Your dad's symptoms sound typical I'm sorry to say.

X

[cabbagecottage in reply to NannaB]

Bev, the parkinsons nurse is going to arrange for palliative care nurses to come and visit us now as well so maybe that will further help with the CHC.

John has dreadful throat mouth jaw problems . I have also arranged for dietician to call and see us . He is losing more weight .

My sitter can't make it and I have not been able to go out at all so they are sending me another . I don't like too many different people for John it's all too confusing .

Enough of me , how are you and colin , are you getting on with the peg .. I do hope so ....

[NannaB in reply to cabbagecottage]

I hope the palliative nurses can help with your claim for CHC, it's been going on far too long. I'm sorry John is losing weight. It's worrying isn't it?

Colin's 2 sitters are both taking time off; 1 is having two weeks off, the other 3. They have to use their leave up before April and they both have a course to attend. We won't be getting anyone else though as they aren't carers for Colin but help for me. I'll miss my time out days. Worse though, the night nurse who does 4 nights is going home to Slovakia for 31/2 weeks so someone else will have to come. Like you say, it's not good for Colin or John to have different people and it means going through everything again and again.

We are getting on OK with the PEG and I am getting more fluid into him now. His mouth is now very dry and mucous thick so he doesn't dribble any more. I don't know if it's the PEG causing it or natural PSP progression.

His Christmas present arrived today; his new rise recliner chair with pressure relief cushion. It was made to measure so is a perfect fit. It's very comfortable.

The old chair, provided via the NHS, is far too big now C had lost weight and he has to be wedged in with cushions. Unfortunately the people collecting the old, large chair, can't do it for at least a month. Our lounge isn't big enough for another arm chair so our son and my brother carried a chair from our suite upstairs to our "dining room". We discovered the doors upstairs are narrower than downstairs and the door had to be removed to get the chair in the room. As it will be brought down when the NHS one goes, the door has been left off. It's the same company collecting the chair as the one who delivered our hoist. They haven't caught up with their deliveries and collections yet.

Time to cook the evening meal.

Hope you have a good evening.

X

[cabbagecottage in reply to NannaB]

Thanks for reply Bev , are you able to give colin any fluid orally . I have found the latest thickener Nutilis clear very much better and easier to use . Not that he can take a great deal . Is Colin able to suck a sweet mint .

It's awful when you lose a carer or nurse you are familiar with . Melanie the senior sister d nurse who is coordinating the CHC !! Told me last visit that she is going on six months to travel in April . .

I am glad I said yes to the new sitter m she is very nice and I think suitable for John . So that the 141 carer we have had . Lol

I had said know then thought I am silly to at least not try .

Does that mean you won't be able to get out at all .i know how important even the shortest time helps .

Glad you have had the new chair . Johns apwas custom made but is much to large for him now ..

Still waiting for the air mattress and cushion for chair .. How's the bottom . Thankfully John s is a little easier but he has been in bed more ..

Got to go have had a commode call . He's only just got off and I put it away to make the place look abit tidier .. Not for long ..,here goes ..

All we seem to do is one thing form one place and put it somewhere else all the time . We could get a job with pick fords lol

[NannaB in reply to cabbagecottage]

I agree with you about Pickfords. I seemed to spend a lot of time moving equipment.

Colin can drink thickened fluids but not enough so now I can easily give him extra.

I'll miss sits for 2 weeks and one the 3rd week but hopefully, if Colin is OK, I'll have the Fridays when he should be at the hospice. I'll be inviting people round for coffee instead. I have a friend coming tomorrow who has a 42 year old daughter with severe cerebral palsy. She has had a PEG since she was a baby so I'll get lots of advice from the expert.

Colin's sore has definitely improved since he has spent more time in bed. He now has a couple of hours on his chair and then goes back to bed for about 4 hours and then up again. The hoist is getting a lot of use so I'm getting a better driver.

Feeding time.

X

[Amilazy]

Sorry about your dad's fall and deteriation of condition. PSP does seem to progress in stages or plateaux and falls quite often cause a deteriation. The spasms seem to be caused by nerves no longer being controlled properly by the brain which is a PSP issue but could be set off by some meds. Unlike mthteach my wife can tolerate Lorazapam which calms and allows about 4 hr sleep but only use low dose and only occaisionally. We have tried amending her levodopa meds but quickly returned to old dose as increase caused major spasm issues and lower dose caused lose of attention/consciousness and took a few weeks to regain old mental level. May I suggest that you discuss your dad's meds with the pharmacist or GP to see if side effects of one could be causing the spasms.

Best wishes Tim

[cabbagecottage]

When u all talk about throat spasms . Can u explain how this is fo me .

I can see John slowly fade , slow doplayedn and the face collapses with jaw jutting and not able to open tongue becomes restricted and throat. This happens a lot about three hours after taking his Sinemet . Th nurse had told me if she stops them he could become slower still

[imli]

I am so sorry for your suffering. Yes it sounds like profession of disease. Esp with the contracture and this awe ful disease gets more aggressive with a catastrophic event. Please get hospice to help ASAP so your dad may have some relief from suffering. Prayers for you. Hospice was wonderful for my Dad.