Progression

[MupstateNY]

I knew that my walking speed has gone down another notch, but today I got an unpleasant surprise. I was reaching farther into my 19yo's closet to see what pizza boxes, etc., he was hiding under a well-draped jacket on the floor. I used to be able to bend at the waist, pick something up from the floor, and stand up again. Well, this time, I got ahold of a small pizza box, with my knees somewhat bent, and low and behold, I could not maintain that position -- I was sinking, sinking, but it wasn't a good place to fall because he has so much stuff on the floor of his room. Fortunately he realized what was happening and rescued me. He's 6'3" and strong. He did his usual thing and put his arms under my underarms and helped me up.

So, apparently I have progressed and will have to stop attempting certain things. My plan is to be the master of ceremonies for the daily room check, and stand in good view of the closet, and direct him to hang up the jacket on a hanger or hook so I can see what garbage he has hidden under there.

Also night before last I fell, getting out of bed in the middle of the night, but was not hurt -- I just found myself sitting on the carpet next to the bed. My 19yo was just coming back from a 2 am snack in the kitchen, so I managed to get on my knees and maneuver to the foot of the bed, and then he picked me up in the usual way (underarms).

How do other people get up again after a mishap? If there isn't a six-footer around to execute a rescue?

 

[Tomswife]

We call the police. They are happy to come for lift assist. They always say, call anytime. But every town is different. We have called 4 times in the past 3 months.

 

[affected]

using a chair can help a lot with someone to help you use the chair. get on your knees, then the chair can help stabilise you as you get up while you are in early progression
having a hoyer that reaches to the floor will allow anyone to get you up
calling emergency for assistance works too

but please, think of how to avoid falls. so many awful injuries that never heal have happened to PALS we love here, and even deaths.

 

[Firefighter58]

Broken hips seem to be the result of many falls.
Al

 

[KimT]

PALS, If possible, please invest in a watch that detects falls and calls several numbers including 911. My Apple watch does this plus I don't have to worry about carrying a phone around. It also detects car crashes. I hope I never have to test that one but I dropped the watch and it knew it was not on my wrist but asked me if I wanted to call 911. It alerted me that I had 30 seconds to make the decision, then it would call..

 

[affected]

I don't remember PALS breaking hips so far, but breaking limbs, ribs and head injuries have been the worst. Also, for PALS with compromised breathing, being on the ground suddenly can be life threatening and we have lost PALS that way as well.
Fall detectors are a great thing if PALS are alone at all. You should test them every month if you have one. I have one for my brother and we run tests all the time.

 

[lgelb]

Note -- "chair" can also be anything from a beanbag chair or foam ottoman to a pillow to a sofa. However, portable stands like foam cubes and short chairs/stools are good to have on hand since you do not always fall conveniently next to the sofa.

Of course, as Tillie notes, the idea is not to fall. Give yourself extra time and start using a cane or rollator if you need to. The greater mobility you might think you have for a while will go backward from baseline after any significant fall injury.

 

[Tomswife]

Tom has bulbar onset. The few times he ended up on the floor i had to immediately get him into a seated position. This meant dragging him to a wall and getting pillows to put behind him. Then i called the police.
The falls have been slides out of a seated position. Not slam on the floor falls.
He is now out of the recliner in the hospital bed with head raised and with the lower part elevated so he can't slide down. He slides down the recliner and i cant get him back up even with the sling. Not strong enough.

 

[MupstateNY]

Tomswife, is he feeling better about the hosp bed this time around?

My spouse attended a new support group yesterday, run by Compassionate Care. I attended a Women with ALS group they run and it was great. Unfortunately these groups are only once a month. The I Am ALS group is once a week. I don't know about their caregiver group(s).

I am taking all your admonishments not to fall very much to heart. I sometimes trip over my own feet when I forget to pick up my foot enough, so today I informed my spouse that when he accompanies me to an appt, I would like his physical support right next to me.

Re PERS (emergency response system), I've been trying to get one (covered by ins.) since early November. I guess Wellcare is going to send me one soon, and once I start the Medicaid long term care (with Nascentia), I think they will give me one with fall detection.

I don't touch the stairs when I'm home alone. ALSA lent me a caregiver call button and we're going to set that up.

By the way I bought a "stair cane" and I like it. It cuts the stair height in half and I no longer have to pull myself up with two hands on the bannister. Here's what it looks like (my spouse spots me when I use it):

Also ALSA lent me a gait belt.

 

[Mary2]

Do you have plans to get off the stairs completely?

I never did much to support my husband in a physical way. We both thought we would be risking my getting hurt.
We used every device out there over the years, canes, walkers, scooters, stair lift ect.

I have friends who love their walkers.

 

[affected]

You would be far better off getting AFO's and a wheelie walker. Relying on a person for stability is not so good.
And yes, if you are helping someone and the begin to fall, you have to think fast and let them go, or else you both end up injured. An injured CALS means a PALS is going to get less care!

Honestly that stair cane might be ok for a very little while, but you need good core and hand strength.

When I broke my toe whilst a CALS I was stunned how amazing those walkers are. I would not have managed without it.

 

[MupstateNY]

Walkers are not so good for me-- I've noticed that people bend over when they use a walker, and that would increase my back pain. I've had 3 thoracic compression fractures of the spine and 2 lumbar. The lumbar ones hardly bother me compared to the thoracic.

When walking I use my old hiking poles -- I like the "handshake grip." They have the rubber tips on now.

I went to Hanger Clinic yesterday, because I finally reached consensus with the clinic about the metal AFO's -- Hanger wanted me to have plastic with a HINGE at the ankle! -- and the orthotist said they will be ready before February -- yay. I've been wanting them for ages but the darned clinic wouldn't get me in sooner to see the PT, and the director didn't want me getting any until she approved me. She said that if I got them too early, that would make me progress faster.

I go upstairs to use the shower and the sewing machine. We have to make some decisions about bathing later on and then do something about the downstairs shower, whose bath spigot broke a few months ago.

Good news, I received my PERS yesterday, my spouse charged it, and I just tested it! It doesn't have fall protection so in Feb I will replace it once I'm on the long term care plan.

 

[affected]

People commonly use walkers incorrectly - you should not be bending over. Talk to you clinic about this and set the height correctly.

You may find with a back issue that you are best starting the process now to get a PWC as it can take months.

 

[MupstateNY]

affected, the picture looks great. I will borrow one from my independence center. OMG, start with the PWC now -- everything's been such a struggle so far -- but I will try.

I was thinking that maybe my additional weakness is due to the Radicava. I've got one more day of my second round, then I get a break.