Massage and ROM

[affected]

In August 2013 Chris and I made these videos.

He was still mobile at this time (should have been using a walker to be safe but was refusing to), and was still being as independent as he could. I had just started helping him to dress but he was still cooking with assistance. He weighed around 67kg pre ALS, weighed around 60kg in this video, PEG went in 2 months later but he was around 48kg when he gained his wings in April 2014.

I'm just sharing in the hope it will help new CALS in particular to help work on the pain that muscle wastage and spasticity can cause.

http://youtu.be/28Bv3-DZq5g

http://youtu.be/CcQvqqoORcs

http://youtu.be/OWw4UjR-_VY

http://youtu.be/DO6f9MHB6Rc

 

[MaxEidswick]

thanks Katrina!

 

[Grumpy'sWife]

Thank you so much. The fact that you were able to think about helping others during that time is amazing to me! Grumpy's shoulders are giving him problems and like your Chris, it is worse in his left arm and leg but he is right handed.
I learned more from your videos than I have from the two PT's who come in and act like I am crazy when I say no you can't just walk him up and down the hall

I will admit I cried while watching them, the smiles he gave you were priceless. You are truly an incredible woman, I only hope I can be that strong on this journey we are on!

Thank you doesn't seem like enough but I have no other words,

Kaye

 

[affected]

I'm so glad they could help Kaye! I can't actually watch them yet, or I just dissolve in tears.

I should have added this one which was done 4 months later. I did this one to help care staff coming here to do hand massage, that was about all that could be done by that point. I would encourage them to play the video and do the massage along with me ...

http://youtu.be/YMGhxvZD8g4

 

[nebrhahe53]

Thank you, I should have my wife look at these videos. I appreciate your sharing.

 

[Barbie]

Trina=how did you weight your hubby? I have not been very successful at it. I estimate my husband's weight at between 115 and 120 lb. I base this on how easy it is for me to transfer him and how bony his body is looking. I have a manual scale that I have had him stand on--but as he can only stand for a few seconds and he is on the sides of his feet I doubt is it very accurate. the last time he tried to stand on it, the reading was about 120 .

 

[affected]

Hi Barbie,
We used to get him standing on regular bathroom scales.

It wasn't until the last month or so that he couldn't stand up for a least a minute or so and that's when I stopped weighing him. Used to weigh him every 2 or 3 weeks.

He was still eating a little by mouth, and had a choking episode that last 1.5 hours, then had pneumonia within a couple of days - 3 weeks before he passed and he was tolerating less and less peg feeds after that and was obviously losing weight again.

So at the time of that video, you can see that was before his peg, he was around 60kg, he was around 54kg when the peg went in, but continued to lose weight down to around 50kg. We got him up to nearly 52 kg about three months after the peg. This was because he would still refuse enough feeds. He would make all kinds of excuses as to why he was still losing weight, even though it was obvious that despite having MND he simply would not attempt to take in huge calories and refused a night pump. Then one day he told the dietician (well I had to translate of course, how embarrassing!) that he was still losing weight because I wouldn't give him enough feeds! I could tell the dietician knew he was talking bs, but the upside was that we did get him to agree that I was working out a feeding regime with the dietician and he was going to just allow me to give peg feeds when I said so.

After that, about 5 days a week he more or less did, but sometimes would still refuse, and some days because his personal care would take so long, and he would ensure that everything got running late, we couldn't get all the feeds in I wanted. And even on the best days I knew he really needed at least one if not two more feeds per day if he was ever going to put any weight on rather than just hold steady. On a good day we would get 2 feeds of 1.5 cals per ml and 2 feeds of 2 cals per ml down him. Nowhere near enough calories for a PALS! On too many days I could only get 1 feed 1.5 and 2 feeds 2 cals. Really not enough...

 

[Barbie]

In the end I guess it doesn't really matter--it is just a number and if they don't take in enough calories they are going to lose weight. As you know, we don't have a peg tube an I am still just pureeing everything up for him. he eats such a little bit, and insists that the last few bites be given to the dogs. of course in his mind he eats like a horse!

 

[Barbie]

one of my husband's favorite stretches is when he is laying n bed on his back and I spread his legs apart. I hold his feet, turn them outward and slowly push them apart. he says it feels very good, even though they can only spread about 2 feet maximum. in the morning it is only about1 foot apart so that goes to show the way things loosen up during the day

 

[pearshoot]

I am pampered.. Foot and back massage, ROM, light strength exercise every day. I believe it has helped keep progression slow.

 

[affected]

Barbie and Pearshoot, I do so agree that massage and ROM are so important for PALS.
Anything that can relieve and keep some kind of ROM should be done whenever possible. I can't imagine laying Chris on his back Barbie, when you said that it made me realise just how long it was that he couldn't do that at all, either for breathing or because of the muscle spasticity.

Pearshoot great to hear from you, and pampering is so important for every PALS, so glad you get it daily

 

[Grumpy'sWife]

Tillie, have followed your videos for 3 days in a row with just a few tweaks and Grumpy is so thankful! He has been sleeping a little better and not complaining about his shoulders as much.
Barbie, Grumpy can't lay on his back but I tried a version of what you said in his recliner and it worked! Also been massaging his feet because he can't move his toes on the left side and that drives him crazy!
Thanks again for all the advice, you guys are truly a blessing!
Kaye

 

[affected]

Oh Kaye, I can't tell you how I felt reading your post.

If these videos can help anyone at all give some relief to the pain, help to slow the freezing of joints and give the opportunity for a CALS to feel they can do something to help, then I only wish we had made many more as he progressed.

What you don't see in that video is that I did have to keep adjusting my technique as Chris's body changed. That is probably obvious in the last video months later when I do the hand massage, I could barely do any kind of ROM on his shoulders by then. So it really is a guide, to try and help you to start working out what works for your own PALS, and then to keep adjusting as need be.

I should put my video of using a hoist in another thread do you think?

 

[MaxEidswick]

>I should put my video of using a hoist in another thread do you think?

absolutely. In fat, we shoult talk to Nikki about a 'Useful" videos sticky ...

 

[Barbie]

one of the nicest things anyone ever did for my husband was pay for a weekly massage for a few months for him. I found a massage therapist who was willing to come to the house and work on him. he laid in bed and then napped after she was done. Not covered under medicare, but well worth it at least once a month!