Need Advices for Steps to be taken

[hitsshanu]

My father Age 60 having PSP.WE diagnosed 1 week before.His right hand and right leg are slow active...falling all of a sudden...Now he s in complete bed rest..eating,having tablets and sleeping..What is his position now?...What will happen next?..What should we do for his life betterment?..Should we make him to do any exercise?..Is that any treatment like physiotheraphy or something for this treatment?...Please advice..

[Kathy]

Hi,

Ideally you need to encourage him to stay mobile as long as he can (even though he may fall). Staying in bed may lead to problems with his chest, pressure areas, blood pressure and bowel function. One sided symptoms (i.e weakness in arm and leg) might suggest CBD rather than PSP. If you are based in the UK ask GP for referral to Physiotherapy and Occupational therapy.

Look at pspassociation.org.uk for more information.

Hope you can get some help.

Kathy

[NannaB]

I'm not a doctor and don't know your dad but unless he has something other than PSP, I would think bed rest is not a good idea. He needs to keep as active as possible, not easy with constant falling, but he will become very weak if he doesn't use his muscles and chest infections are more likely to occure if he is lying down immobile all day. I try to take my husband out as much as I can. He has to use a wheelchair and will appear asleep but knows everything that is going on and listens, getting enjoyment from what we are doing. I don't know where you live and how much help is available but hope his doctor is aware of PSP ( ours wasn't so we gave him a printout from the internet) and is able to give you advice and access to physiotherapists, speech therapists and occupational therapists.

You sound like a very caring daughter, it is good he has you to seek help for him.

Best wishes

Nanna B

[hitsshanu in reply to NannaB]

Thank u nanna...My mom is there with him all over the day...Evening he s practicing Physiotheraphy exercises...Will try to make him walk a little distance...He want move around but his health is not responding..Will make some wheel chairs tfor long distances and walk a small distance..Will arrange for a speech theraphy as well morning hours we make him read the news paper louder..Thank u so much...

[jimandsharynp in reply to hitsshanu]

If he can manage getting into and out of a vehicle do take him places now. Don't delay! My wife took her last trip in our car this week. I had such a difficult time getting her in and out without injury that we just have to give it up. So if you can get him in the car for long rides do it NOW! I can't stress that enough.

Jimbo

[NannaB in reply to jimandsharynp]

Hi Jimbo, so sorry your wife won't be able to get in your car any more. I reached that stage with my husband a few months ago and now we have a wheelchair adapted vehicle with a winch so he sits in the back in his wheelchair. If you can get one, it's well worth it. If not, I hope you can get someone to sit with your wife sometimes. You need to be able to meet with others and continue with hobbies if you can.

All the best.

Nanna B

[jimandsharynp in reply to NannaB]

Nana how much does such a van cost?

[NannaB in reply to jimandsharynp]

Hi Jimbo, I don't know where you live but we are in England and the car is leased under the mobility scheme. I had to pay £1200 pounds and the rest is paid

By deductions from a mobility allowance we were granted. This used to be paid directly to us but now goes to the leasing company. It's a converted Citroen Berlingo. In England you can buy used ones that are not too expensive. I hope you are able to get one as it has allowed us to continue to get out together for a bit longer.

Best wishes.

Nanna B

[jimandsharynp in reply to NannaB]

Nanna, I'm in the USA but I appreciate your input. Thanks!

[LynnO in reply to jimandsharynp]

Jimbo,

I live in the U.S. too. My mom bought a handicapped equipped van for may day several years ago. It was a Doge van that was converted. At the time she spent about $20,000.00 for it. It had a motorized lift so all she had to do was wheel him on it and push a button and then wheel him to the passenger side of the van and lock his wheel chair in. It was a GREAT purchase for them both. I can't remember exactly where she purchased it. (somewhere in St. Louis) But I would google dealerships with handicapped vans. Something should come up to help you get started. I'm sure the prices vary now, probably some cheaper and some more expensive. Not sure if Medicare will help with the cost either, but it would be worth checking. Good luck with your search and thanks for all your posts. the are all very helpful! My prayers are with you and your wife.

LynnO

[jimandsharynp in reply to LynnO]

Thanks Lynn I appreciate the information.

[dorothy-thompson in reply to NannaB]

Hi NannaB

Just seen your post, in the UK you are not eligible for. Mobility allowance over the age of 65. My husband is nearly 74.

Doroth t

[NannaB in reply to dorothy-thompson]

It seems a very unfair system doesn't it Dorothy ? My husband was 62 when he was diagnosed and we were advised to apply for Disability Living Allowance. I had heard we couldn't get it after 65 so applied for attendance allowance and was told the DLA would continue for as long as he is incapacitated. He is 66 now. We really appreciate this benefit but I do feel for others in the same situation who don't get it because they were older when they were diagnosed.

Nanna B

[jillannf6 in reply to dorothy-thompson]

hi dorothy

i realis e tha t u cnanot ge tDLA but ar eyou gettting the attendance allowance for your husband??

u do need it and should get it

i was lucky and on the 2nd try got hte DLA before i was 65 and we have a mobiltiy car

loljill

[dorothy-thompson in reply to jillannf6]

Hi Jill

Yes my husband does get the Highef Attendance Allownace. As he is over 65 he does not qualify for the DLA. I drive so we can get out although it can be a struggle getting him in and out of the car sometimes.

I think I have been slightly misunderstood, I have no money problems, which is the only bright spark in this awful saga. I am just so tired all the time.

I hope you are well though.

Take care and thank you for thinking of me.

Regards

Dorothy

[jillannf6 in reply to dorothy-thompson]

hi dorothy

i am so sorry you are tired all the tiem=jhav eyou eben checked out by your dr re your tiredness??

lol jill

:=)

[chopra123]

Is he taking syndopa and where do you stay? My grand dad too has PSP.

[hitsshanu in reply to chopra123]

Yes.He is having Syndopa-0.5 mg;Deplatt-7 gm and Mc.Vit...Now we are in India,Tamilnadu.

[chopra123 in reply to hitsshanu]

I am from india too. My grand dad stays in karnataka,mysore. He is on syndopa too,but we are thinking of slowly stopping the medicine as it is showing no benefit and the side effects are much more. Tried showing him to many neurologists in bangalore and mumbai. maybe we can share our contact numbers and get in touch

[hitsshanu in reply to chopra123]

We showed our father to a neuro specialist for brain.His name is K.V.Srinivasan.His clinic is in RA Puram,Chennai. Clinic contact no is: 044-24616943..Hope it would be helpful for you.

[chopra123 in reply to hitsshanu]

Thankyou.. My grand dad is under the care of a neuro in mysore.

[jimandsharynp in reply to chopra123]

Chopra, Yes stop the med if no benefit is had. The side effects from long range usage can be terrible and irreversible I'm told.

[chopra123 in reply to jimandsharynp]

Thank you jimandsharynp, yes but the doctors and people say that the medication should not be stopped all of a sudden,was looking for someone who has had the experience.

[jimandsharynp in reply to chopra123]

We have experience. On it without much change off it no change. Back on it again no change. Off it for good now. Bad long range effects I read. Off and on was w done slowly in steps. Jimbo

[jillannf6]

Hi

My reply has been lost so will reply tomorrow

lol jill

[jillannf6]

Ny reply has been lost twice son will reply tomorrow

Loljill

[Peter3]

Hi Hitshanu,

Sorry to hear about your dad. I agree with what others have said in that bed rest often is not the answer, instead he should be encouraged to mobilise initially with the help of a physiotherapist. Have other conditions been ruled out?

Best wishes

Peter3.

[jillannf6]

Hi

Im if you're in the UK r get a social worker. For,your dad

The you clan get carers in for him with help from the,council too

Rhe needs to b kept,active even if inbed

Lol,jill

[hitsshanu in reply to jillannf6]

Thank u lol jill...we are in india...Thank u for your advice...Will make it up...

[jillannf6]

Hi

Ps it has taken me about 6 goes to get the post published

Lol jiłl

[jillannf6]

Contact thrvPSP assoc for help

Loljilll

[jimandsharynp]

Shanu, Sorry to hear about your father. I'm not a doctor but here is what I do know. The symptoms of PSP and CBD (another brain disease) are similar. The differences are that PSP patients generally have a problem with vertical gaze (looking up or down without moving the head) while CBD generally affects one side of the body more than another. There is a great book by Jannet Edmunson titled "Finding Meaning With Charles". Her husband was diagnosed with PSP but autopsy at his passing found it was actually CBD. Could be he was diagnosed with CBD and autopsy proved PSP, can't remember which way.

Ah, "What will happen next?" is a common question. Problem is no one knows. PSP can be slightly different in each patient. One may have balance issues early on while in another they come later. Same for any symptom, they can be more prominent in one patient than in another or even not appear at all. Example: Many with PSP have mood changes, anger, depression, etc. My wife has NOT changed in anyway. She is the same personality with PSP as she always was, thank God!

I've posted my thoughts on dealing with PSP several times so her I go again. Our thoughts are NOT on what is coming next. Our thoughts are NOT on what stage of the disease is she in. We are living by the "take one day at a time" rule. We don't discuss PSP, what's next, when will she die, etc. etc. etc. Why? Because you can't change it and knowing about it and stewing over it just takes away from each day. What is ahead is so very, very different in each patient that you can't know so why fret over it? End of soapbox. LOL

Jimbo

[hitsshanu in reply to jimandsharynp]

Thank u so much Mr.Jammo...Previously when we diagnosed...All of us reacted much on it...we couldn't bear that our lovable has this kind of disease,,,But now we compromised and came out of it...As u said we are thinking that everyday is a best day and we should not miss this days happiness and leading life...but in the same time if we come to know what will happen next,we all would be aware and will prepare ourself to react accordingly..for example, when he was crying for happiness, we were cried for him...if we came to know that his behavior will change,we wouldnt cry...thats y...Thanks for your advice and i will read the book as well check with our doctor to confirm whether it is PSP or CBD...Thanks once again...

[2twin4]

Hang in there my friend you are in for a very very hard ride. I am taking care of my husband , its been 9 years he was diagnosed and boy is this sickeness bad or what, the moaning is hell, had to build him a bedroom in the basement with double sheets of drywall and a steel door, can you imagine this is where I am at, keeping him at home was a promise I made to him, sad to say but today I regret it... I do not want to discourage you but it will get very bad..

[dorothy-thompson in reply to 2twin4]

Dear 2twin4

Ain't that the truth! My husband is in his 8th year of PSP and he has had all the symptoms, personality changes, loss of balance, falling, anger, aggression, both physical and verbal,coughing, choking, moaning, groaning, sleeplessness, night time incontinence, constipation, apathy, poor vision, a complete disregard for his own safety, he is constantly wanting to be taken to the toilet all day long, it is exhausting.

But when I look at all the above and knowing there I no cure, I say to myself. Is it any wonder he is like he is, how would any of us react if it were us.

Dorothy. T

,

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Dear hitsshanu

You may also find the Personal Guide to PSP helpful. You can download it from pspassociation.org.uk/getti...

Kindest regards

Liz