Help! Strength: Conserve or Use It or Lose It?

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ThisPresentMoment

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My Dad was diagnosed in Dec. 2017, with limb onset, starting with his hands / arms. Yesterday evening, he was unable to stand from his lift chair for the first time. My husband and I drove over and were able to get him out of it with the lift, (after a youtube troubleshooting video. It was our first time.) My Mom has her own physical limitations that don't allow her to use the lift.

His home care PT had recommended that he get up and walk (with a walker) throughout the day, basically a use it or lose it philosophy. He walks to the bathroom or to the counter to eat. By the end of the day, he's finding he doesn't have enough strength left to stand.

Does it make more sense at this point for him to conserve his strength and use it strictly for transfers? He can use his PWC where he has been walking. It might not buy us a lot of time, but the longer we can go without full time help, the better.
 

Nikki J

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A lot of PTs are clueless when it comes to ALS

I am a strong believer in conserving energy One of our late members was told to sit early ( use wheelchair) and she felt it preserved transfer

Save his energy for things he wants and needs to do. Make things as easy as can be

Use or lose it does not apply here
 

patrick123

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This just my 2 cents. I look at it this way. You have only 10 units of energy per day. It's up to you how you want to spend them. Go over those 10 units you'll feel it, that same day or the next day. I don't agree with your PT (use it or lose it) ALS doesn't work that way. Conserve energy, do what you feel you can do. Stop when you feel fatigued.

Patrick
 

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Vincent has his spoons story that works perfectly how patrick describes it.

Especially as the day moves on and he becomes tired, remember he is at risk of falling and a resulting serious injury. You would not wish that on him, nor on your mum witnessing and making emergency calls.

When my Chris started to have more trouble walking we started by using wheelchair when first getting out of bed and in the evening. We gradually increased until he wasn't walking but was doing standing transfers.

Your dad will not progress faster if you start helping him conserve energy. He will be more at risk of falling if he pushes to do what he is no longer safe to do.

Hope this helps :)
 

lgelb

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Send that PT packing. This is not a post-op orthopedic situation.

Yes, your plan makes sense.

Best,
Laurie
 

lgelb

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+1 for ROM and massage, including of the hands and feet upward, and the tilt on his PWC should be varied throughout the day, likewise when he posts up, elevating the feet at times.
 

KimT

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Be very mindful of ROM. Some PALS have pain. As long as he can give feedback, ROM works. If he cannot give feedback, look for signs of pain. Look at his eyes, when or if he can no longer speak.

Same with massage. I've talked with so many PALS who have pain, even when they are still walking and have the use of all limbs.

Early on, when I was still walking a couple of miles a day, my back started hurting. I went to an RN who was a licensed massage therapist and claimed he understood ALS and fibromyalgia. He hurt me so bad I had to order a lift chair after the second session. The chair was a blessing and I'm still using it but you really need to vet people who are doing ROM and massage. When in doubt, pass.

ROM should never be done on cold muscles, whether they are working or not. Warm them with a heating pad or some other method. I usually take a hot shower before doing ROM and I've even hurt myself when I was not paying close attention. Everyone is different.

The pool has been a blessing for me BUT I'm having a problem with my right knee and both my doctor and I believe it was from repetitive motion from straddling a noodle and "peddling" for 30-45 minutes. It felt OK when I started doing it but now it's a chronic problem. I still have strength in that leg but the pain has thrown off my gait so I'm back in PT.

I felt great all last Summer but now I have to be very careful how I sit, stand, or move.
 

MarieLaure

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Hello
Sorry to intrude but what is rom ?
 

Bestfriends14

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Hi Marie,

ROM is the acronym for range of motion.

You're not intruding at all : )
 

MarieLaure

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Thanks
That is an important question
My dad loves what he calls exercise and I keep fighting between don’t overdo and do as you please, getting angry at those who encourage him to do more and feeling guilty at trying to slow him down. I am lost your post help a lot thanks
 

KimT

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I'm all in favor of exercise as long as it doesn't hurt, is safe, and does not break down muscles.
 

MarieLaure

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Ok but it works him out and then everything is harder
 
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