MY HUSBAND JUST DIAGNOSED WITH PSP

No one until yesterday could figure out what he had. Got an apt wth the head of the movement disorder clinic yesterday at Shands in Gainesville and he finally figured it out. He is in a rehab facility at the moment and has been there for over 2 weeks. Other than raising his med level and saying he needed more therapy addressed to his condition, is there any reason for me to keep him there. He is very unsteady on his feet and there is no way he can walk alone. Says he trips over his own feet. i have noticed that when he starts walking, he tends to walk faster and faster. He was in the bathroom there yesterday and did well getting there with a walker but when he turned to walk out him almost fell, thank goodness I was with him. I am trying to get a hospital bed at home for him to help him getting up but do I really need it? He is so desperate to get out but I have to have grab bars put in the bathrooms, just ordered them yesterday. Any suggestions anyone? I want him home as well since I think the care he is getting is horrible and he is miserable. What scares me is the falling and from what I have read difficulty with eating and the eye movement issue as this progresses.

17 Replies

oldestnewest
  • Very sorry you have had this news, but it all sounds very familiar. I'd get the hospital bed. Eventually you will need it. Physiotherapy is a big help, but very much sooner and more rather than later. The falling is frightening, but is just part of the deal. Grab bars do help. Hang on yourself, and keep in touch here. It's a good place for information and comfort, too. Love and peace, Easterncedar

  • IN THE PROCESS OF GETTING THINGS ROLLING TO GET THE HOSPITAL BED AND A SMALL WHEEL CHAIR THAT I CAN MOVE. THE ONE I HAVE NOW WEIGHS A TON. OUR DOC IS A GOOD GUY AND THEY ARE FAXING THE SCRIPT TO THE CO NEAR US. I AM SCARED TO DEATH. DOC WILL ORDER THERAPY FOR HIM AT HOME. HE TRIPS OVER HIS FEET NOW BUT IF HE FALLS I WILL NOT BE ABLE TO PICK HIM UP ALONE AND HAVE NO ONE TO HELP ME. DO NOT HAVE HOME HEALTH INSURANCE SO BASICALLY ON MY OWN.

  • MAINE EASTERNCEDAR, FL HERE

  • stay strong.

    you seem o have a good doctor.

    a physio can show you how to get him up from the bed with a walker to hold onto and then he can get to the wheelchair with help.

    for getting him up in case of falls - are there any neighbours you can count on? as this is what my mum does ( she is in France and I am in England so I can't go and help).

    make sure you get some rest - if he sleeps in the afternoon - you need to get some rest as well.

    the hospital bed is great as it also stop an eager PSP patient to get up whenever and risk a fall.

    take care of you

    G

  • Hi Gwend, Hosptal bed ordered by our Doc and a smaller wheelchair which hopefully I can lift. He is so unhappy in the rehab facility and does't quite understand that I need to have everything ready and in place for him at home. It breaks my heart. I feel getting the hospital bed now is the right way to go, will make it easier for him and I will buy a twin bed for me to sleep right next to him. Doc will order the therapy for him, he has done that before. I asked the one up in Gainesville who finally diagnosed him what therapy he needs and he said one for Parkinson's. I am thoroughly confused.

  • S does exercises that were designed for Parkinsons sufferers. They are brilliant! A lot of the symptoms of PSP are like Parkinsons, hence they call it a Parkinsonism. Get help, teaching you how to get your husband off the floor. It is possible, there are various bits of equipment that can help, if you can't teach your husband how to get up, by himself, with only a bit of help from yourself.

    Best of luck, hope you manage to get everything in place soon.

    Lots of love

    Heady

  • TY Heady, So why call it PSP but it is also Parkinsonism. The thing that scares me the most is his falling. I am little 5' tall and weigh 112 lbs with a bad back myself. He weighs 175 and when he last fell I should say say slid off the bed there was no way I could lift him and have no one close to help me. My biggest issue is that.

  • I was talking to my sister-in-law last night. Like you, she is quite petite and when her husband was partially paralyzed with brain cancer last year she had a dreadful time managing him. He was impulsive, and always trying to get up and go after he had lost the use of his legs, and so ended up falling in difficult places. She said she was calling 911 all the time, if there were no neighbors about to help her get him up, and several times she just got him a pillow and a blanket and let him lie there until the sun came up and help came along, or until he'd gathered the strength to get himself up.

    I find it heart-wrenching to see my guy on the ground, and I have done myself harm hauling him up. Better to call for help, I think, although handing him a pillow so he can rest until he can get up by himself is not a bad idea. I may be trying that.

    Also, the physical therapists have been very good about trying to teach my guy how to get up, and I can coach him through the moves he needs to make. Do ask for that.

  • Hi easterncedar, I think that is a great idea giving him a pillow until he can get up. In fact I mentioned that concern to the therapists working with him now. I am trying to get him a hospital bed to take him home as we speak and because of an auto accident he had 4 years ago, the stupid insurance co, The Hartford did not close it out to medicare which is holding up the delivery of the hospital bed. Everything is a nightmare. The medical supply place that I am getting it from said they have medicare as the secondary insurer. Trying to get that mess straightened out. He did not have a good day between the facility screwing up his meds, he seemed very exhausted. I give him coconut oil at home and they neglected to tell me they ran out of it. Why is everything a battle

  • Yes, that feeling that everything - everything! - is a battle is one I know. Exhausting. It feels as if sometimes the luck would HAVE to turn our way for one little thing! Just one! Sometimes I fantasize about collapsing - but I know that would only make things worse. Hang on! We are all in this together. Love and peace, Easterncedar

  • NEVER ENDING BATTLE, I AM COMPLETELY EXHAUSTED. ONE LITTLE THING WOULD BE NICE FOR ALL OF US.

  • Hi, welcome to the best site ever invented. Real shame that you had to join though.

    My husband was diagnoised nearly two years ago now. On this site we are all carers, like me, or sufferers of this evil disease. So we ALL know what we are talking about and we ALL know EXACTLY what you are going through at this present time. I promise, you will feel better, once you get used to the idea!

    The secret is to be as positive as is humanly possible and to take each day as it comes. This IS the only thing that works. Read all the old blogs, some will fighten you, some will give you hope, the rest, hopefully will make you laugh. We all tell it, how it is. Ask any question, rant any feeling, share the good, bad and the ugly, nobody will judge you, all to busy going through exactly the same! This is a global site, somebody somewhere will answer your question, whatever time you post. Great for those sleepless nights worring about something we might be able to help with!

    I'm afraid there is no answer to the falling, just keep the floor as tidy as possible and move anything precious. Oh, and make sure your medical cupboard is full!!! I think S is keeping the plaster companies a float, all by himself.

    Get your husband to a Physio as soon as possible. There are exercises that really help. Multi directional movements, I really know when S has not been to his classes, (like now) as everything starts to suffer, his movement, speech and swallowing, the lot! Try the Parkinsons Association, they started these exercises.

    Try not to be frightened, hard I know, but your husband needs to know that you are in control (acting classes help here!). Just remember "one day at a time", today will have enough problems, without worrying what tomorrow will bring!

    Lots of love

    Heady

  • Amen to everything you have said Heady.

  • TY

  • hi

    I was dxd 4+ years ago now and am still here upright most of the time apart from when i am flat on the floor either face down or face up - but u r right the falls are frightening but part of the condition = I use a wheelchair inside and out to reduce the no, which it certainly has done

    the eyes /eating /and swallowing can be big problems as well but worse for me is the incontinence which i shall soon have i am sure i am having probs getting to the toilet on time and for the first time on monday am i blocked the toilet with all the paper is use to try and clean my bottom!

    but it could be a lot worse and i am still here and can laugh about it (not that my partner finds it amusing= he doesn't)

    so hang on in there and as the others say it is a great site to be on

    lol jill

    :-)

  • Once the danger of fall was obvious for my dear wife we opted to use a transport chair and never use the walker again. Elimination of falls can eliminate hospitalization from head trauma. No point in walking when the results can be bad. You can still exercise the legs while in bed etc. IMHO Jimbo

  • I AM THINKING OF GETTING HIM A HELMET TO TRY TO ELIMINATE HURTING HIS HEAD IN A FALL. ANYONE TRY THIS?

You may also like...