PSP - Sara Stedy & hospital bed have moved in

[journeyofjoy]

After much research and help from many of you on this site, I purchased a hospital bed with "low air loss" mattress (one of those mattresses with an automatic pump that deflates/inflates). Also bought a Sara Stedy. I think both of these items are going to be a big help. The bed is for the long haul and I'm hoping Sara is as well. I now feel like we have our armor and are ready to take this on.

That being said, the caregiver has noticed Sandy's voice has become much softer in the last couple of weeks and he is also slumping in his chair off to the right side much more than before. I was thinking that we might skip this step of any voice or speech problems - that maybe we would be the lucky ones that don't experience this. And when we have a period of stability, sometimes I wonder if he was misdiagnosed and really doesn't have a bad disease or he's going somehow pull out of this.

Thanks to all of you wonderful people who responded to my questions about the hospital bed and the stand device.

[Birdman34265]

Hi ,we use a Sarah stedy and find it very useful, Kathy has psp and has no balance,she can hold on sometimes with one hand,I have a safety

belt which goes around her, slumping to one side is what Kathy does when seated ,I prop her up with a pillow, good luck hope you find it useful..

Peter

[journeyofjoy in reply to Birdman34265]

After two days, I have determined that Sara Stedy is worth every penny. It has made transferring much easier, quicker, and safer. The only safety concern is my husband's leaning to one side. What type of safety belt are you using. Did you purchase it with the Sara Stedy or make it yourself? I really think we will need one of those soon.

Thank you, Joy

[Birdman34265 in reply to journeyofjoy]

Hi Joy, our Sara stedy was supplied on loan from the hospital NZ

The belt is called Active sling S for up to 200kg also supplied ,is

made by ArjoHuntleigh, hope it helps.

Peter

[journeyofjoy in reply to Birdman34265]

We have the manual Sara Stedy, not the electric version. As far as I know, they don't make a sling for the manual. We may be able to find some sort of belt on Amazon.

[Katiebow]

I'm sure you will find both so beneficial I know that having them made it possible to keep Ben at home. It was only the last few weeks that Ben had to use the hoist as he could no longer weight bare or hold the handle. Best of luck, you will soon get used to using them and wonder how you managed without them.

[journeyofjoy in reply to Katiebow]

Both the hospital bed and the Sara Stedy were good purchases. I look around our home at all the equipment but every bit of it is helpful. To keep Sandy at home, I need everything I can get so we can both get through this "relatively" unscathed.

I'm glad that Ben was able to stay home.

[AJK2001]

We had a physio visit yesterday and I mentioned to him about Mum leaning to the right and he felt it was because the right side was stronger she favours the right and so uses the left less and less, so it gets weaker and weaker. He suggested trying to get her to do more things with the left, so use it to hold her cup rather than the right and also do more exercises on the left side. One thing I hadn't picked up is that when she holds the walker all the strength is on the right grip, so she can release her left hand and there is hardly any effect but release the right hand and she can't stay upright unsupported. Don't expect we can work miracles but we will try the exercises and see if they make a difference.

[journeyofjoy in reply to AJK2001]

This does make sense. Sandy's weak side is his left side and now he's slumping off to the right. He's not aware of it and it's hard for me to pull him over to the other side. Quite some time ago, before we had any idea of this disease, he used to lay in the bed at an angle. Every night I would ask him to move so that I could get into my side of the bed. I am sure that was brain miscommunication, rather than weakness.

[Tttp]

Hi there glad you were able to get the bed ok, hopefully he will get more rest now, it’s bittersweet when you have to get a bed but will make it easier on him and you. Take care. Nettie

[journeyofjoy in reply to Tttp]

Thank you Nettie. Still working out the glitches but am thankful we have the bed.

[Tttp]

Hi are you in the US or UK have a good day. Nettie

[journeyofjoy in reply to Tttp]

We are in the US. After buying this bed, my husband is still more comfortable in the recliner. His back hurts and after five hours or so of sleeping in the bed, he's in pain. Another problem to solve.

[Tttp]

So sorry, being in pain is terrible, has he always had pain or more so being in his recliner do you have where the bed will go in different positions for him, hopefully you can get is pain under control. I have mentioned something in other posts threw the years, if any patient has PSP, or any medical problem and your a Veteran it is paid for they will rate you my brother is 100% so everything threw the VA is provided for his needs, just a thought. I live in Northern California

[journeyofjoy in reply to Tttp]

I think he needs to be in a better position in the bed in order to adjust it and have it hit him in the right place. He'll try it again tonight. It should work. This hospital bed works for lots of people with various types of issues. It'll work for him too. Just has to figure it out. He isn't a veteran. Thanks for checking in!

[Khartt]

Since you are in the US, have you contacted your local hospice? We just got enrolled in services and they will provide any major equipment you need— all billed through Medicare. We have a bed and a lift coming in a few days. My husbands decline has been steep in the last several weeks, in year 6 or 7. Just a thought.

[journeyofjoy in reply to Khartt]

If you don't mind me asking...what were your husband's first symptoms? Did they start out as subtle symptoms? When you say 6 or 7 years, has it been a gradual progression? My husband is not walking at all but his speech and swallowing are not affected. He started out with stiffness and numbness (which is probably a symptom of MS). He has declined rapidly in the last year. So hard to predict where he's at with this disease.

[Khartt in reply to journeyofjoy]

His first symptom were mild cognitive impairment , mood changes. Then he had some coordination problems, falls. He progressed from cane to walker to wheelchair . He has had a very rapid decline the last three months, just now so stiff he can’t bare weight, turn in the bed, feed himself. Still talks some, can eat and drink but I have to feed him and he’s having a hard time remembering to swallow.

[journeyofjoy in reply to Khartt]

My husband had his first fall a couple of years ago and 15 months ago started falling frequently. Fell over backwards so many times I lost count. He doesn't fall anymore because he doesn't do anything that puts him at risk. He went from cane to walker to wheelchair all in the last year. Is your husband in bed most of the time now? And is he at home? Does your doctor give you a prognosis? Or is this something you want to know? I wish I knew more about prognosis - just so I can plan for our future. God only knows.

[Khartt in reply to journeyofjoy]

He’s in bed a lot but I try to get him to his lift recliner when I have help. He is still at home.

We just started hospice care us I have a private pay caregiver that helps. He fell a month ago during a transfer and broke four ribs. After 3 days in hospital and a week in rehab, I feel like he’s had a major decline.

I don’t know a prognosis , overall he seems in good health, but being sedentary and now trouble swallowing, who knows? Interesting he had a swallow study done a month ago in rehab and it was fine. The doctor says it’s the brain not telling him to swallow, not that he can’t.