Standing frames?

[agate]

I was watching a video of an Progressive MS Alliance panel discussing progressive MS, and one of the experts suggested a "standing frame" for people with progressive MS disability. This speaker is British, and maybe she meant what we in the US would call a walker, but maybe she meant a standing frame. Is anyone familiar with this?

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If anyone is interested in the Progressive MS Alliance discussion, sponsored by the MS International Federation:

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The panel participants are:

The panel was facilitated by Stuart Nixon. Diagnosed with MS at 18, Stuart serves as co-chair of the UK MS Society’s Scientific Research Strategy Committee and is a recognised global advocate for ensuring people affected by MS can get the support they need to have a good quality of life. Stuart was joined by three MS experts:

• Professor Alan Thompson – Chair of the Progressive MS Alliance Scientific Steering Committee and Dean of the Faculty of Brain Sciences at University College London;
• Professor Jenny Freeman – Professor of Physiotherapy and Rehabilitation at the University of Plymouth, United Kingdom;
• Professor Giancarlo Comi – Co-chair of the Progressive MS Alliance Scientific Steering Committee and Chair of the Department of Clinical Neurophysiology and the Director of the Institute of Experimental Neurology at the Scientific Institute San Raffaele, Milan, Italy.

For once, a panel discussion that did not spend a lot of time going into specifics about the MS drugs. The discussion is more of a pep talk--cheering on people with progressive MS to take sensible care of ourselves and asking for support for the Progressive MS Alliance.

Maybe this is being presented just now (April 10-12, 2019) to cushion the blow that some may be feeling on learning that the latest MS drug (Mayzent/siponimod), which was touted as being the "first ever for SPMS," is really only for the type of SPMS that still involves relapses.

[Virginia]

Cat had something she called a stand that helped TC get her up and transferred to her W/C. I don't know if it is one of these.

[agate]

I think that is what it is.

A problem came up here recently when I started wondering if something like that might be helpful. The other night my 97-year-old neighbor called when I was already almost asleep, telling me she'd fallen and couldn't get up, and asking me to give her apartment door key to another neighbor whom she was going to call. He is a guy who probably could have helped her get up or at least he would have called 911 for her.

She called back about 10 minutes later to say he wasn't answering and she had finally managed to get herself up. But I wonder what would be the best solution for her if this happens again.

These are the solutions I've come up with:

1 - I could call 911 for her or she could be encouraged to call them herself. If she can call me, she can call 911.

2 - I can encourage her to get to the emergency pullcord and pull it. It would automatically dial 911 and the EMTs would come to the building and let themselves in. They would even have a key to her apartment or they could get it from me.

3 - I could go up there and get her rollator close enough to her so she could help herself up on it. I've tried this with my rollator and it works but it's a tad less stable than it should be, IMO.

4 - When I heard about the standing frame, I wondered if she might need one of those--but it would be one more thing for her to trip over in an already compact space.

[nuthatch]

A standing frame is something totally different than a sit-to-stand transfer device. A standing frame is used to improve bone density by weight bearing, thus bone strength and to improve circulation. Unfortunately, the two terms are confusing, at best!

A sit-to-stand device is used to aid in transfers. Some are very simple for those who simply haven't the strength to rise to a standing position without assistance, but can pull themselves up to stand on a platform. The devise has padded knee/shin bracing and a bar or handles to assist you in pulling up and to hold onto. The whole device is then rolled by a caregiver to a chair, toilet, wheelchair or bed to be seated without needing to taking a step and risking a fall.
More "advanced" sit-to-stand devices have bracing under arms, etc. and what I affectionately call a "hiney lift" or sling lift. Some are manual, some hydraulic. All require an assistant.
This is probably what Cat was talking about having.
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A standing frame is for more disabled people who can't stand and remain standing for any length of time without more support. They are usually strapped in and what I call "sandwich supported" in a standing position for an allotted period of time to achieve the health benefits. They are sometimes called standing tables because they may have a tabletop attached. Not primarily used for transfers, mainly standing.
As in the link you posted, Agate.

I wouldn't recommend your neighbor using a walker or rollator to help her to get up after falling. It's too unstable and almost sure to cause a worse injury if she were to go down again!

Something like this devise worn every day and/or night is the best bet, IMHO. Scroll down the page for product details.
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My 92 year old aunt has something similar. The best thing about it is the "fall detection". If you fall, it detects the fall by the jarring motion. An operator then calls you, but if you can't answer, they send 911 to you.
Unfortunately, it was after she took a fall in which she suffered a broken back, that she got the device. A few weeks ago she fell again and broke 2 ribs. She wears it all the time now.

I have one of these, which doesn't entail a monthly bill but doesn't have fall detection. Better not get knocked out, gotta be able to at least push a button!
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The statistics on elderly falls is frightening . . . way too common! Add that to disability and progressive weakness and . . . UHHH!
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Be safe everyone!

[Virginia]

Glad this topic came up. I am thinking I might get something to keep with me since I am here so much alone and no one checks on me. Nuthatch I might get what your Aunt has. I especially want mine for when I get in the shower. It would have to be a little more than splash proof - it needs to be completely water proof. When I shower I wash my hair and do all that good stuff, so it would get very wet.

I thought about getting the one that would be on my alarm system, but that means I would have to have a new contract I think and I don't want to do that. I have had the same fee on my alarm system since back in the 90s so it is pretty good.

[stillstANNding]

My mom has Lifeline. It has a pendant that they encourage you to wear in the shower/bathrooms since many falls occur there and surfaces are hard.

ANN

[Sunshine]

I have Lifeline. You wear it like a pendant. It detects a fall, as long as its not the kind where you are in a low chair and slide down.
A voice comes on. If you do not respond, they call EMT and anyone else you put on their list to call. They also have a list of your pertinent info.

[Virginia]

I have been on this site and spending time on google all evening. I become more confused. I guess I need to get a pad and write down why I don't like one over the other. I will think I have found exactly what I need and then I will find something that doesn't work for me. I found a couple but they only reached 600 ft which is not enough if I go out to empty the trash, which is definitely one of the places I need it since there are 9 steps. Or the price will look low, but when you get down to your particular needs it goes up.

I would like to get one that you just buy and do not have to pay a monthly fee, but I have not found one that works for me. Also, some have a water proof button that you stick on the shower wall and I don't want that. Suppose I crash through the glass shower door onto the tile floor. I don't think I could get up on that slippery floor to hit that button.

Well, at least I am getting serious about getting one. Oh and by the way some go up in price as you keep them. My house alarm stays the same and I thought one of these would do the same. I looked up the one connected to my home alarm system and it had a low rating.

[agate]

Slippery shower floor???

Slippery tub/shower floors are really dangerous, IMO. You don't have the floor "roughed up" with those stick-on gripper things?

I agree that you wouldn't want the waterproof button that sticks onto the shower wall. I didn't know about those but I've heard of buttons on pendants or wristbands that can be worn in the shower.

Yes, I've noticed too how the price of these personal response systems goes up as soon as you start trying to fit it to your individual needs. But it's probably well worth having if the person is capable of dealing with it. It's not so very complicated--but remembering to press the button seems to be a big problem for some.

People fall and are disoriented, sometimes for quite a while afterwards, and don't always remember that they have this resource right there.

[Virginia]

Finally ordered the alert system. I looked at so many it was becoming confusing so finally I told myself to just do it. I ordered the Classic Guardian system. When I got on their website and found that it has a 1300 ft range and seemed to fit my other needs, I was just tired of looking so I ordered it. It will cover me going to the trash and I get a lock box with it. So hopefully that will take care of that. I should get it within 7 days.

Now I need to do some house cleaning. Laura called and she will not be here today.

[Sunshine]

Good going Virginia! Will it also detect a fall?

[Virginia]

Sunshine, it is suppose to. It is waterproof, has fall detection and reaches further than some of the others. I will try it out when I get it and make sure that it does the things I want. I am suppose to be able to get a refund. I was surprised at how many are out there. Enough to get confused. I would like to have gotten one with GPS that I could take anywhere, but for me the cost was prohibitive, so when away from home I will continue to rely on my little flip phone. Linda and I cling to our flip phones.

[Sunshine]

I hear you Virginia. Keep us posted on your alert button. WE might all need this device.

Re Flip Phones: I so miss mine. I still keep mine plugged in just in case I can use it again. We live in an area of poor reception. Even with a network extender, the cell coverage is so poor that we had to switch to smart phone as the flip phone wasnt supported by the devices used to amplify wifi coverage., or lack of it...

They are easy to carry, much easier to type, in my opinion, more durable, smaller, had many alarm features....so miss mine terribly.

I never go online anyway with my smart phone. I don’t like that I can be tracked, nor do I need the extra expense. Nor has a situation arisen where its crucial to go online immediately.

[agate]

I ran across this standing frame, which was used in a clinical trial done in the UK and reported in a couple of articles in The Lancet (August 2019). The researchers supplied people with progressive MS (primary or secondary) with this standing frame, and they were to stand in it for 30 minutes 3 times a week over 20-36 weeks. There was a control group of people with progressive MS who followed their usual treatment without the standing frame.

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The way the person used it is shown in a couple of photos in one of these Lancet articles:


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