Any one using a in-home physical therapist for PSP patient?

[jimandsharynp]

I'm wondering if, when a PSP patient can't walk it is worth hiring a PT for them. Anyone do that? It would give limbs some movement. My wife can no longer walk but can stand to assist in dressing her.

Jimbo

[Hidden]

Hi Jimbo

My wife cannot walk more than a few steps and has to use a heavy duty zimmer frame and I have to hold her because she "falls" frequently (and I prevent the falls). She transfers from her wheelchair via the frame to the bed, toilet and her recliner. Recently she started having prolonged freezing gait, so I organised a physiotherapist specialising in neurological disorders (mainly Parkinsons) to assist with this problem. My wife can now walk (some shuffling) much further (still aided) and, for now, the freezing gait has almost disappeared. The aim is to strengthen her bottom and leg muscles, and "cue" her steps as she walks. Just doing half an hour physiotherapy per week has helped but she becomes excessively fatigued. She tries to do the right things but often when excessively tired she still finds it difficult to remember the way she has to stand and sit and move her legs when "walking" those few steps.

I think your wife could benefit from this type of physiotherapy, but I'm aware that it is always limited in its success due to the progressive nature of PSP and its characteristic action upon balance, posture, gait and movement.Nevertheless, keeping muscles and joints supple ( and bones to be weight bearing) is very important when our loved ones become essentially wheelchair-bound,

All the best with your decision.

[jimandsharynp in reply to Hidden]

Thanks for the great information. I'll look up Zimmer Frame.

Jimbo

[carolinesimmons]

I asked my husband's physician to order PT and OT from Home Health. They still have to have "progress" to stay in. His goals were to stand more efficiently and to get up off the floor by himself. (I have just had major abdominal surgery) They were able to come twice. Once to work on the standing and then to determine that he would never be able to get up from the floor on his own. Now they are gone and we are back alone - so we have a private hire coming in twice a week to help him shower. I've heard that range of motion exercises are helpful in keeping limbs moving, but of course we can do that ourselves.

Caroline

[shasha]

i am lucky here in france as i get a free physio appt at home 3 x a week- i find it very helpful in that she makes me walk unaided down our corridor and does many strengthening exercises - also i go on a static bike for 5 mins minimum a day which helps to strengthen my leg muscles - so i would say if you can afford it - go for it

[shasha]

ps i also have a wheeled zimmer frame which is heavy enough to stop me falling over but it is very hard work and my husband tends to walk me to the loo i am also going to ask my neuro to prescribe an electric wheel chair so that i can get around better on my own and help with the house work etc - on the mornings that she does not come i still do the exercises on my own - in bed ones and sitting down in my chair ones

[teena2]

Hi Jimbo,

Chris had always been a keep fit fanatic, but always did his routine at home, never in a gym. When he got PSP he could no longer do his weight lifting and was very depressed about this. My friend is a fitness instructor and so i asked her to come in to do personal training for him. We rapidly descended to chair exercises for him, but he did enjoy them and was well pleased when we tried dexterity and hand/eye coordination movements with a ball and he could catch it but I couldn't! it was too late to do much with muscle strengthening,but it did boost his morale and this was very important for him. We only stopped when he became bedridden. I would say go for it.

All best wishes, Teena2

[Sugardart]

Jimbo,

I had physical therapy for my mother for rigidity on left side (mainly arm). It did help her with range of motion. I have since purchased a rifton tram lift. This lift can be used by one caregiver. They have a walking harness that allows the person to use the tram as a support system and gives them ability to walk. It also allows you to lift the person up from chair, toilet, bed. Please take a minute to check it out. They have a website with all the info. It is spendy and insurance in the US does not cover it. If you calculate the cost of nursing care you will find that it will allow you to care for a person in the home.

Kath

[jimandsharynp in reply to Sugardart]

Kath, Thanks for the valuable information. I'm going to check up on that Rifton Tram Lift.

Jimbo

[Peter3]

Hi Jimbo,

My husband started having more active gym sessions advised by his new physiotherapy because he was developing a severe shuffling gait with frequent freezing. Unfortunately the sessions made him very tired and he would need to spend the rest of the day sleeping.

I need to be with him now when ever he starts to move from bed to chair or anywhere else as he constantly falls. Our experience with increased physical activity has not been a positive one sadly.

I'm a firm believer now in giving almost anything a go.

Peter3

[annielee1]

Hello Jimbo,

My husband had pt & speech therapy to help with his swallowing but really did not like to do it on his own even if I tried to help. I found that those few hours of therapy a week did not really do him any good & later the therapist did not see any use in it as he was not really improving. He is wheel chair bound but does walk to the bathroom & to the car with my assistance. I think if your wife would enjoy the therapy & there could be some benefit to it then you should go for it. It certainly wouldn't hurt.

Annielee

[LeighaAnne]

Hello everyone! my dad had pt early on in psp. it did not help. to let everyone know my dad died 2 days ago. It was the most peacefull thing I have seen. He is with the Lord now. My thoughts with all those who are dealing with this disease.

[jimandsharynp in reply to LeighaAnne]

LeighaAnne, Sorry to hear about your dear dad. This is a terrible disease and he is finally at peace. As for you and your family, don't second guess the care you gave him in the course of the disease. You did your best in a very difficult situation. May God give you some comfort, and your family, in the days and weeks ahead.

Jimbo

[Kathy in reply to LeighaAnne]

So sorry to hear of the loss of your Father. I am glad the end was peaceful and hope your faith comforts you in the difficult days ahead

Kathy

[Kathy]

Hi Jimbo,

As a physio (as well as the daughter of a PSP sufferer) I would say that if your wife has been unable to walk for some time the benefits of physio would be very limited. However, it may well be worth having one or two sessions to get them to show you how best to help stand and transfer your wife in a way that protects your back and takes care of both you and Sharyn. The therapist should also be able to show you gentle stretches and passive movements to help maintain range of motion in Sharyn's joints.

As the other's have stated, it's a fine line between remaining active and managing fatigue.

I would be very wary of any "walking harness" at this stage as they are usually only designed to prevent falls in someone who is still able to walk (i.e actually initiate stepping) rather than helping a "non-walker" to walk again, although the hoisting/lifting function might be useful.

Hope this helps!

Take Care

Love to Sharyn

Kathy xxx

[jimandsharynp in reply to Kathy]

Kathy, Thanks for the valuable input. As usual you are helpful.

Jimbo

[SharonAB]

Dear Jimbo,

My comments do not answer your question - when I reflect but perhaps (once again when i write!) there is food for thought....

Instead of in-house physio, John now attends a hydro physiotherapy session once a week - with one to one support and normally no one else in the pool. The pool is equipped with all types of harnesses and run by the Multiple Sclerosis Society of WA who assists other neurological conditions. John also now attends a community group physio session. I think both these activities are more social than physical, but they definitely still tire John out a lot. (Are these possibilities for your wife to consider also?)

As part of John’s care plan - he receives massages to his feet and legs each day from carers. Could this be in part what you are looking at receiving for your wife? I gained some knowledge (That I have since imparted to John’s carers) from John’s podiatrist (that sees him each month) and a masseur (my Uncle Eddy) who travels with the Australian cricket team and Aust. Women’s 10 pin bowling team. The lightly done massage takes about 20 minutes. An emphasis is placed on the toes, top and bottom of the front of the foot, calf muscles and the ankle area. (I imagine if it were for me, it would be legs and heel – such is the PSP walking and standing differences?). The aim to relieve pressure from the tightening of lower leg muscles and to provide temporary relief to the permanent bursitis that John has to the top and bottom of his feet. I personally have also promoted the massage for other reasons – It helps ensure John’s feet and legs are dried, and moisture is put back in the skin and any abrasions or injuries are picked up and followed up quickly (he has had cuts & ulcers & breaks to the skin from fluid retention). And it is a good way for keeping a rapport and banter going as the massage is carried out whilst John is seated in his recliner with legs elevated (A captive audience you might say!) And, it forces John to elevate his legs high to help with reducing fluid in the legs (He refuses to carry out otherwise!).

John does not see or feel injuries and has an extremely high pain threshold. In addition, he has a lot of fluid build-up and darkened skin. Is this the same with your wife? I presume it is poor circulation (part of PSP?) or perhaps medication. Drs have been elusive when I have questioned.

Regards,

Alana – Western Australia

[kryste]

Hi yes try warm water therapy it does wonders It feels so good to them not only helps their whole body relax but they are weightless.