Doctors believe my husband has PSP, but are careful to not make an absolute diagnosis. It all began with falling, incontinence, and a blank stare with a few cognitive issues. He does not have a problem with looking down, only up, so this is why they will not commit to a diagnosis. I thought things were bad a month ago with my having to worry , not be able to take him to a restaurant unless he was in a chair etc. He could walk to the bathroom , get in the car with help, and get up 3 stairs to our home with my assistance, in the past couple days he has gotten more rigid and weaker. I have had to call people to get him up after falling 3 times in the last two days. I have a gait belt and was able to do it in the past, but now it has gotten harder. He is an incredible good man, yet I understand what you say about getting angry. He gets up and does things he should not, which results in falls. I tell him he must listen to me, although I know that is probably degrading to him. I feel like I am always cross.
I would like your experience with lifts. I need to be able to get him up when he falls. If you have had any good experiences with something that worked for you, I would appreciate it.
Karyn
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Karynleitner
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It is a sort of blow-up cushion which lifts him up to chair height so I can then get him up. Its a bit of a nuisance but good to have in reserve if there is no handy strong help.
Hi i havent written anything before yet but have been reading all yor helpful posts for last couple of years .husband now falling alot and im not strong enough to lift him.OT came and demonstrated the camel and the elk .said i thought the camel would help as it would allow me to roll him onto it and it has a back support when it inflates,the elk is like an inflated pufee which he would have to start from a sitting position with his knees bent and arms folded on his chest.dont want to give me camel without trying the elk first..
Get yourself some help love always start early to get things into place .
Whenever A falls I have to ring ambulance to get him up and they then check him out to see if he's ok. It does get frustrating but unfortunately it doesn't get any easier I'm sorry to say
A couple of months ago, my 88 yr old mother took 3 hours to get my 91 year old father , who had to go work in the garden, off the ground and into his wheelchair- she couldn't call anyone because my father was laying on the phone in his pocket. lol
I agree with Sue! You have to avoid injuring yourself and the patient, hence always call an ambulance! Tiring, stressful, annoying but the only way forward I'm afraid x
I know that day will come for us but it works for the time being. John doesn't have so many falls now with his zimmer The ones he does have are usually bathroom related! Xx
Where in the US? I found the hoyer lift really good, although we only used it a few times. It takes up a lot of room, but is even almost fun. My guy didn't mind it.
We live in Wisconsin. I asked his physical therapist about it and he thought it would be difficult due to space and also the weakness in his arm and shoulder. He was also concerned that it will be difficult to get the sling under him. I may eventually have to use one to get him into bed. That too is a bit of a struggle .
Jack has no arm power either. I live in a state of sore back and shoulders!!!!! I needed to call when he backed down the stairs and broke a couple of ribs a few months ago, and almost called the time he was pulling up his pants and went back bare butt first between the toilet and the cupboard with no room to turn - omg.
That is exactly what we did. Now he is having trouble getting his legs to all fours. My sons can lift him to his knees, but I cannot. Also, now his one arm is very rigid and weak so he is having trouble grabbing the chair,. I am worried about what I will do.
Same here - one arm is a big problem especially if it's under him. I have to say, tho - I have been noticing how difficult it's becoming to get him up ~ I used to be able to wonder-woman him up and the last few million times - I'm really struggling.
Feels like im reading exactly whats happening with ny dad. My mom is his sole caretaker. He was at this stage i can say around 8 months ago where he used to try getting up n falling constantly to the extent of having his forehead stitched up. They tend to become so adamant dont knw if its the disease or the frustration. Well now psp has progressed and he is not able to get up even though he sumtimes does try his best. His body has no balance at all. Even if he sits to eat he falls dwn thud on his side n v need another person jus to hold him. Well sorry..comin back to ur point my mom used to hold his pant at his waist n pull him up. My dads on the heavier side n quite tall n mom is pretty petite. Also at times she couldnt pull him up she would ask him to drag himself til the edge of his bed n then she would push him up onto it. Sounds sad but no options!
Feel sorry for your mom. and ask her to take care of herself too. my mom has slip disc issues and we have an attender helping dad with basic chores coz mom cannot help.
Thanks so much for your reply. I scares me, although I absolutely want to know what's next to prepare for. He does seem to be letting his head fall to one side often. Also have trouble getting him into bed. All, extremely sad. We must pay for help so do not have any. If I had an idea how long this will go on it would be helpful . I can still get him to the car and into a wheel chat when we are out, but am concerned about him being in a strange bathroom alone. We have been in our home many years and must move as it is not good for him. How long has your dad had PSP.? Thanks for your reply.
Its been almost 6 yrs nw n he is in a state where v cant even take him to the washroom. Its impossible. He bends his knees n drags his feet literally. Coughs n chokes a lot. Still mom manages to get him out of his bedroom to the hall in a wheelchair as v fear lying on the bed may invite bed sores. He doesnt sit for more than 5 minutes in the hall.I hav no idea as to what stage he is in n what could get worser than this.
which place in India do they live in? I feel there is lesser awareness in India for PSP even in the medical community, making it all the more difficult. All my learning on this subject have been through these links shared here. Your dad's condition sounds very similar to the stage my dad is in. Hates sitting, asks to be taken back to bed. The other day when we (With great difficulty) made him sit, he thought he was standing and kept screaming that he was unable to stand.. and all he was doing was assisted sitting with his whole body weight on another person
Last night it was heights..dad was insisting mom to take him outside which she couldnt as she has bad elbow pain lifting him up and dr has askd her not to carry heavy objects. So he tried gettin up by himself n fell dwn..she picked him up onto the bed..but he was very wild at her..she had done a wooden barrier on the side of the bed which stops him frm falling dwn n she locks it up in the nights for his safety but last night he kicked it n broke thd whole thing..he removed him pampers n threw it off and peed all over the bed..maybe he is showing his anger towards her..feel very sorry fo mom..
This is all familiar, but before dad was officially declared PSP. hugs to you - you have to be hearing all this from a distance.. i know what it feels like for you.
Yesterday, there were some advises here about controlling his agitation. do look at medicating him. this is as it is terrible, but we could try to control some symptoms.
Didn't mean to hijack Karyn's thread, but had to say this to you Reena. There are agencies that source part time and full time carers for you. Agree its a hassle having to maintain these guys.. but we at least get to use their services when someone is available and that could be a huge respite for your mom. i use one in tamilnadu, i can refer to this group or you can find someone in your area too.
These are agencies that provide caretakers/attenders for elderly care. Most of these attenders agree to moving around cities for these services. i just did a google for "elderly care in mangalore" and found this - octaplusmedicare.com/geratr.... There should be more like this. You could check portea also.
They provide 2 services in general - attenders and/or nurses. Attenders would do the job of what your mom is doing - taking full care of your dad including feeding, lifting. you can take occasional nursing help from the same place too which would be an additional charge.
The agencies giving us people will take care of identifying alternate attenders when needed and they take (normally a month's salary) their fees from you.
We are facing needing to move as well. I think if my husband won't be able to get around (to his bathroom downstairs) , He probably by that point won't be getting to the bathroom on the same floor either. So why don't we just stay in this house? It looks to me like we will be using the portable pot either way . This house is good for me. ( her selfish self just said : /)
There are falls and falls. When Chris was more mobile he had horrendous falls. He is 6ft. 1". so a long way to fall !!! Bad cuts etc, - so obviously ambulance.
Now he is less mobile so falls are often slips - no injury but on the floor.
Need is to get him up without hurting me ! Strong neighbour or Camel.
I am going to join a scheme where someone comes out to you. It costs but not much.
It appears that he can manage to move around without falling if you gave him a hand. It is frustrating for both, but better than the stage he could be in if he had a bad fall. So try asking him to call you when he wants to move around. I know it isn't easy to make that happen.
Our telecall button thingy ! Sorry to be vague, if i press that they send someobe out from the firm,very quick servide costs about twelve pounds a month, originally for rog but i wear it now as he is not safe to be left now.
If not already get referd to an OT.
I keep banging on about the severe mental impairment payment which you apply for to dramatically reduce your council tax , only needs a signature from GP, even our social worker had not heard of it!
PSP will not get on the list but there is room to add other illnesses
This is the most exhausting and frustrating stage of this illness both for you and them
Hi Karyn. I don t know where you live but my first suggestion would be to contact your Local Authority and ask if they offer a Responder Service. If they do, they will supply you with equipment that includes a button your husband will wear round his wrist. If he falls, either of you can press the button and members of the Response Team will be sent out with equipment to help get him up. There is a small quarterly fee for this. If your Authority do not offer this service they may be able to tell you of private companies doing the same job. I have had occasion to use this service for my husband and it is wonderful. Good luck and be careful not to hurt yourself.
Thanks . I live in the Midwest , USA. Our fire and rescue department will send first responders to get him up. They come with sirens etc.. The other day he fell twice , so I only use that as a last resort . I think that the companies that have the call buttons you wear only alert the fire department here because there service is free. I'll Che k it out.
Thats such a pity, Karyn. I live in Scotland and I must admit we get great service here. We are so lucky and, believe me, I really appreciate it. There is a piece if equipment others have described (I think it's called a Camel) which is the equipment the responders bring. Maybe you could hire it? I imagine it's pretty expensive. Keep in touch and let us all know how you're getting along.
You need a Manga Elk lifting cushion.If he is hurt you must call an ambulance but if not You roll him on to it, put chairs either side and basically inflate each cushion one at a time supporting him as it brings him up to a sitting position. It is a 1 person operation and very simple to use. Ours has been invaluable. It is not his fault that he is reckless. I am afraid PSP seems to come with "motor recklessness" i.e. they do not recognise danger so despite falls they take risks and fall again, and again.Only downside to the lifting cushion is price around £960 on the internet. Don't pay VAT.
So sorry Dr's think it is PSP. If it is confirmed, my advice is to somehow get help in fast and early. Ideally "live in Help"This beastly illness is certainly not one to be underestimated and can very quickly overwhelm you..Ask the people on this site!!
Another thing that also has just come to mind is a Ustep Walker. This is a US engineered walker designed for PSP and Parkinsons . It is horeshoe shaped with a lot more wheels and so is more stable than a normal walker. My wife had 2 of these at the earlier stages of the illness, one for upstairs and one downstairs. However they cost £500 but only $500 in the US. My wife was diagnosed with PSP 6.5 years ago and was at your husbands stage ,probably 5 years ago. I understand that the speed of progression of the illness varies from individual to individual.
My husband used to fell in the first three to four years backwards inspite of my repeated requests not to go for unnecessary meaningless work. He used to be very adamant and very angry with me. Every time I had to call someone to lift him and move him on to the bed. Because I live in India and have people around me someone or the other used to help. He is a heavy and I am a very light personality. Since three years his deglutition, voice have gone and since two years he is on peg and he can take few steps with great support to the bath room and he is very fragile and I employed two maids to help me to lift him up and render all his services. His entire body is very rigid mostly his upper and lower limbs. I will give glycerine enema once in three days to pass motion and at times I have to remove it manually and every day mostly during nights I have to apply suction to remove the secretions in the throat. Since seven years I am following and doing this like a yagnam as both my children are in other countries. They speak every day and come as often as possible to stay for few days . In the beginning he used respond somehow like little hand movement or saying in low voice ash like that. Now a days Thera is not even eyeball movement. It is such an agony to see my loving, energetic and hard working husband like this I cannot describe it in words. I don't know what is going to happen and when.I cry everyday once or twice for a while sitting by his side. I am following psp association since three years. By the by I did not mention both of we are doctors. Just I want to share with you and for any suggestions.
Thanks for your reply. How long has your husband had PSP? I worry everyday about how I will handle him. My heart breaks for you. My husband was also a very happy, strong and kind man. I am trying to take it a day at a time, but it is sad. Please let us know how you and your husband are doing.
Hello Karyan, my husbands disease was diagnosed seven years back by a neurologist in Visakhapatnam and he said it is variation of Parkinsonism and put him on Parkinsonism drugs. After one or two months my son working as an anaesthetist in UK told me that it is psp a very slow progressive degenerative disease of the brain stem and asked me to take retirement from my profession and I did so and from then onwards I am seven by twenty four care taker for him. But prior to this he has occasional falls backwards and trouble in driving in a zig zag fashion and facing difficulty while doing surgery due to lack of axial movement of eyes,and started behaving adamantly. So we retrospectively think the disease started in 2009 itself but because both of we are busy we thought it might be due to heavy work with lack of rest and also he is a diabetic and might be due to hypoglycaemia and had his parameters repeated cheking and also had his cardiac evaluation thrice , all giving normal results. Since three years slowly he lost his balance completely, then his deglution and speech. But even now when he is alert and stays with open eyes I think he understands what is going on to a certain extent. I feel our life ended abruptly. I had lot of hopes after retirement , both of we should see the places together as we were busy throughout life. But God thought the other way. So I should face it and take care of him and see that he is comfortable, happy, and leaves this world with dignity.
So dear Karyan dealing and managing such a person especially when that person is our loved one requires lot of patience and energy. Our heart and mind struggle with so many feelings which cannot be expressed in words. Only the people who are facing such situation can understand. Be brave, firm, decided and go ahead with love and kind heart.
Hello pvn - where in India do you live if i may know. i live in TN. Very sorry about your husband's situation, it appears that you are able to handle it reasonably ok without much support as you are a doctor. My dad is completely bed ridden and he just wouldn't attempt sitting/standing. We are managing without peg for the time being. He chokes but manages food in small quantities (solids better than fluids). i hate to think of peg. Its all so scary to think of what is in store.
Hello, vidvv, we live in AP , near Vijayawada. As you said it is true, because I am a doctor, I am able to manage him with no outside medical help. But you see that it is such an agony to see him suffering for so many years without being able to cherish anything and even not able to express his opinion in any form, just surviving in a vegetative form. However it is my firm decision to provide the best to him in all respects with lot of love and affection.
Karyn you NEED a diagnosis. The fact the doctor doesn't want to give your husband one is just not acceptable. Can you get a second opinion? My husband had PSP and MSA. He was told it was MSA the month before he died! I actually think the original diagnosis of PSP and MSA was right..but who am I? The doctor hardly listened. The nurse agreed he was wrong when I spoke to her!
It's not good enough and when you are nearly on your knees you are not in a good place to argue? Hope you have some help caring for your husband?
Please please, get a second opinion. It's not good enough to leave you both in the dark.
Thanks for your reply. We have been to 4 neurologists. One was a Parkinsons specialist and one a movement specialist. The original two neurologist sent us to our local medical college because they were unsure of the diagnosis . One of the doctors said it is PSP. When I looked it up and read posts here , I believe that is what he has. One doctor thought MSA because he can look down. He cannot look up. His incontinence and sudden change in personality, blank face and small writing were the first things we noticed , along with frequent falls. I think they are all just afraid of being wrong . This has all got me scared, worried and anxious every minute. I hope I can care for him, do not want him to get worse, yet wonder how long we can live in this sadness.
I hope you are able to find someone who can help you. My brother about at the stage your husband is at and was just diagnosed. I also was diagnosed with death of areas deep in my brain by neurologist at Froedert Hospital in Milwaukee three years ago. She told my daughter with the amount of damage the MRI show I should not be doing all the things I do.....and also there is no treatment or cure. She suggested I try to contact people doing research in this area. Could you share the name of your husband's neurologist with me.. My neurologist was DR. BOOK.
My husbands neurologist is Dr. Eichensheer. She is a neurologist that is a specialist in movement disorders,. She is at a new Froederdt campus in Menomoned Falls.
I have bed sheets all over the house. I wrap the sheet around his butt and pull his butt over his knees - I also put a garden kneeling pad under his knees - I have a kitchen 2 step folding stool on each floor. When I hear the all too familiar thumpclatterthump sound I grab all three items and get to him. Ideally, he is able to get onto hands and knees when I pull the rear end over. My husband has no arm power so I put the sheet around his chest and give him support - being SO CAREFUL not to hurt myself - if you hurt yourself - you are both screwed!!!! I support him as he gets his hands on first the lowest step then to the second step and up - I keep the sheet on him until we count to 20 because he will go right back over sideways if we rush it.
When he lands face up - different story - he has to roll over(and he can't) to get to hands and knees -I never try to get him up front facing - impossible - I did hurt myself thinking he and I had more power than he/we did.
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Thankful for a Hoyer lift. 
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