Deterioration??

[Toddet]

I’m not sure whether anyone can help. My husband seems to have gone down hill recently. He is getting far more fatigued and also falling a lot more (four times this week), luckily with no injury. He is really struggling to speak too, in part due to fatigue. Just feels like a significant step downwards. He can still deal with personal issues, and dress himself, but am I seeing the start of PSP taking a real grip??? Have an appointment with Neurologist in November, not sure if I need to bring this forward, and if I do, what they can do anyway???? Any advice really appreciated. Thanks so much.

[Hidden]

No two people exhibit the same course of decline. He doesn’t sound like he is very far along in his decline if he still dresses himself and deals with his personal issues. He will probably plateau at some point and stay there for a few years. Hard to say how it will go.

The link below is by two care givers about stages of PSP. Not all the symptoms that can occur are covered but this might help give you an idea of where you are.

brainsupportnetwork.org/psp...

[Toddet in reply to Hidden]

Many thanks Jeff. I think we are definitely seeing phase 2. Really appreciate your help. Take care of yourself.

[SewBears in reply to Hidden]

Thanks for the article about PSP. I wonder why my husbands doctor was so quick to rule out PSP. It seems to me like he suffers with many of the same symptoms. I wish I understood this better. Ho-hum, keep plugging away at the unknown.

[NannaB]

You are seeing the progression of PSP but as Jeff said, everyone is different. I stopped thinking about how far on my husband was and took every day one at a time taking advantage of what he could still do whilst trying to be prepared for what was to come. As his speech deteriorated we worked out a sign language for when it totally disappeared, which it did, put visual baby monitors in front of his chair to try to avoid falls by being there when he stood up and making happy memories which I can now be thankful for. Personally I wouldn’t change the appointment as my husband’s couldn’t help him and suggested we didn’t see him again but call on the many other professionals involved if we needed them. Hopefully your GP has put you in touch with, speech therapist, occupational therapist, physiotherapist etc.

Best wishes

XxxX

[Toddet]

Many thanks NannaB. You are right, I do try and be grateful for every moment & also every time a fall only results in a scratch! Will take your advice on board. Thanks again.

[doglington in reply to Toddet]

Our neurologist was very good and empathetic but they have nothing to offer when getting there is more trouble than its worth. I agree with NannaB to focus on making the best of where you are, preparing for the next but make memories which you will treasure in the future . Its tough but you will not experience everything you read here. No one gets everything !

Good luck on your journey.

Love Jean xx

[Dadshelper]

I suggest making notes of everything you think is important to a doctor. Typically appts will be months apart and it is easy to forget things when the doctor asks questions.

Ron

[AnneandChris]

Hello there

So much of what you've written is familiar.

We've found that the falls decreased once Chris lost his mobility, with the exception of an horrendous one a few weeks ago when he tried to stand unaided.

Life is now very quiet as he barely speaks. He likes classic music on in the mornings and tv thereafter.

He has been prescribed Clonazepan which has helped him sleep through the night.

Our neurologist has now said he can do no more and handed him over to the Palliative Care team, so we wait now to hear from them.

So please keep on keeping on, this journey is tough but you'll have support here.

Hugs

Anne

[Toddet]

Thanks Anne. Take care x

[LuisRodicioRodicio]

Hi Toddet!

I'm sorry PSP has entered your family.

These are some ofour experiences on PSP-RS disease expecting they could be useful:

First: If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

Recently (08-2018) and apparently with good results, Rock Steady Boxing exercises applied to PD patients are being tested to newly diagnosed PSP patients.

Rock Steady Boxing for Patients with Parkinson's: youtube.com/watch?v=XC1h4yg...(Not working as expected?)

At this moment most of the types of PSP disease have not a scientifically proven pharmacological treatment which even slows progression but there are several experiences in progress in different hospitals that have not yet reached definitive conclusions.

Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. However if you didn't feel any difference then maybe it was not working for you.

Lou T. has studied publications on parkinsonism and synthesized studies related to substances that could slow the progressive symptoms linked to PD and other related neurodegenerative diseases. It is interesting to read this document:

"Supplements we use to Try to Slow Parkinson's Progression (and other neurodegenerative disorders)" (2018-03-11)

smartpatients.com/conversat...

On most of PSP types the only thing you can do is counteract the symptoms…....but, despite how hard this disease is for everyone, it is posible to achieve a reasonable quality of life, even interesting.

Hugs and luck.

Luis

[Toddet in reply to LuisRodicioRodicio]

Thanks Luis. Really appreciate your comments. Take care.

[SewBears]

I recorded our doctor visits and then transcribed them when we got home. It helped me be able to review everything that was said and then I could ask questions that didn’t come to mind during our appointment. The notes really helped to keep things straight in my head and it to be able to explain to loved ones what I hard learned.

Bring up everything that you mentioned in this post to your doctor. It’s all important and it will help them better to understand how to treat the symptoms. Don’t leave anything out. You need answers so keep asking questions until you understand what you’re being told. I’ve had to ask the same question three or four different ways before I could get a reasonable explanation. The transcripts help me be able to look things up after the fact. I don’t feel dense, just like I’ve been talked to in circles sometimes, if that makes sense.

Hope this helps.

❤️ I SewBears

[Toddet in reply to SewBears]

Many thanks Sew Bears x

[bgentges]

I agree with everyone, you need a notebook and take notes of everything, dates, times, food, fluids, BM, urine, how many times they get up at night, number of falls, etc... Its easier to recall the when you see the Dr and see patterns that may be triggering issues, missed BM maybe constipated, low output maybe dehydrated, more irritable maybe UTI, etc.

I would suggested a separated notebook to jot down questions for the dr as you think of them. This can be used to write down what the dr says.

[Dianajeanann in reply to bgentges]

My husband did that before he was finally diagnosed with PSP. He thought taking a lot of notes might help the doctors come to a conclusion. But they just thought he was being obsessive! Now the only things we keep track of is his weight, blood pressure, etc.

[Toddet]

Thank you all very much. It’s hard particularly as one of the falls was at a BBQ with friends and neighbours so drew a lot of attention. People find it hard to deal with, sadly there is a lung way to go and it will get a lot worsen

[doglington in reply to Toddet]

I was very open with friends and neighbours and found them very supportive. Fortunately Chris was not a man who felt embarrassed. I found restaurant staff great - as long as they understand the needs. On one occasion at the end of a family meal out he was really tired and I was uncertain if we would make it through the busy restaurant. The manager quickly took Chris' other side and supported us through , chatting cheerfully and making Chris feel like an honoured guest.

Love Jean xx

[greelycat]

Hi. My better half was able to dress himself (albeit slowly) right up until a couple weeks before he passed. And he would rarely sleep from midnight on. But when I would leave for work at 6 a.m. (tired from being kept awake half the night) he would sleep soundly for a good three hours. All part of the progression.

[AJK2001]

Hi the best help we got from the Neurologist was referrals to other specialities but I felt we only got these because I got a bit stroppy and asked what was the point in coming to see them. Unfortunately due to the nature of the condition they can offer no magic solution. Over the years we have got referrals to Hospice day centre, eye hospital (as local hospital eye dept. was useless) and dietician, but the GP could have probably done these for us as well. Whilst you are waiting for your appointment ask GP to refer you to SALT (Speech & Language Therapist), they can advise on exercises and if swallowing an issue on diet changes. Be wary though, these people have probably never come across PSP before and do not know much about the condition. Our SALT lady initially told us that there was nothing to do to help Mum's speech as there was no study on PSP that suggested that exercise helped. I challenged this - asking if there had actually been any study done on PSP at all, as there are so few people with it and saying that people on this site found exercises useful (thank you Luis) and next time she visited she came with a selection of exercises for Mum, which I do believe helped. So you have to be prepared to fight your corner and inform yourself, you will know more about this condition than the medical professionals and have to help them understand things without alienating them.

Keep coming back with questions - it's how we all learn.

[Toddet in reply to AJK2001]

Many thanks. We’ve been having SALT and they have been great. Been waiting nearly a year for OT and the physio told us to ask for a tablet to solve the backward falls!!! Have a note to chase OT on Tuesday. I think it’s more the day to day issues as you do worry that you’re doing enough. Take care and thanks for replying.