Old 04-14-2019, 03:15 PM #1 (permalink)
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Default need for advice

hello , my Najib and i have father who's been diagnosed with ALS

recently my father had lost his right hand he can't move it any more , he cant walk without falling too , and now the other hand is going down . i have no clue what should i do to help him out .
the big problem is that the right hand is swollen and i don't know why , we asked his doctor about the situation and she told us to massage it with olive oil , but that didn't help at all it's getting bigger every day . the second problem is defecating he cant do that too .
please help me , what should i do .
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Old 04-14-2019, 04:03 PM #2 (permalink)
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Default Re: need for advice

Hi, Najib, very sorry to hear about your dad.

It looks like the closest ALS association for you is in Malta, but they may know of some resources closer to you so I would certainly reach out.

Your dad needs a wheelchair so he will not fall. Do you know how to get one?

For defecating, getting enough water is important, and having enough time on the toilet as the muscles that help that get weaker. If he can't go for a long time, he may need an enema, or care at the hospital. Warm liquids can help if he doesn't get enough of those.

For the swollen hand, make sure you are massaging the swelling toward the end of the fingers in long firm strokes, holding your own fingers on both sides of his hand at the same time so you are massaging on both sides at once. And when he is sitting or lying down, including when doing massage, his arms should be supported and elevated with elbows bent, not hanging down.

You might try to arrange a video consult with a specialist in Portugal or Malta or a clinic that has a Morocco connection in some way? Have you consulted at the closest medical school (Rabat?) or nursing agency?

I wish I knew more about health care there, but all of us find that the more calls we make/emails we send, the more help reveals itself. Do not give up, Najib. Help is out there.

Best,
Laurie
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Old 04-15-2019, 06:37 PM #3 (permalink)
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Default Re: need for advice

i can't thank you enough for your help and answering my question thank you so much Laurie.

for wheelchair im trying to find used and cheap one no luck till this day but ill try my best .
i dont know any ALS association that could help my father in my country .
i never consult with any school or agency i have no clue how to do that.
health care in my country is disaster if you want better one you need to pay much money that i cant afford .
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Old 04-15-2019, 06:54 PM #4 (permalink)
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Default Re: need for advice

The hands have edema which means they are retaining fluid because he can’t move them. In addition to massaging them the way Laurie suggests, it’s important to keep them elevated above the level of the heart as much as possible. Using pillows or bolsters to elevate them may help.

There are also compression gloves, like Isotoner gloves, that may be worth looking at.
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Old 04-15-2019, 08:06 PM #5 (permalink)
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Default Re: need for advice

thank you very much for the advice Karen ill try to do that right away.
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Old 04-16-2019, 02:02 AM #6 (permalink)
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Default Re: need for advice

Karen has pointed out that I should have been more specific about massage.

If you only have a minute for massage, just trying to "even out" the fluid in the hand while keeping it elevated will help, whichever direction of massage that takes (up or down).

If you have more time, it is good to go all the way up the arm to work with circulation as fully as possible. The same is true for the feet if that becomes an issue.

Edema of any kind is helped with a steady fluid intake, sitting/lying down with the joints supported (you can do this even with foam scraps or pillows) and changing position as much as possible.

Does your dad have a hospital bed or a recliner?

I encourage you to look at dotmed, an international marketplace for medical equipment. There are Moroccan dealers there.

Also Google Peace Wheels, a project looking to bring more wheelchairs to Morocco. I don't think it's been done as yet, but they might have some leads for you. It's mentioned on their site that the Entraide Nationale du Maroc is the agency responsible for providing wheelchairs in Morocco, so I would contact them, certainly.
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Old 04-16-2019, 05:19 AM #7 (permalink)
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Default Re: need for advice

Najib if you googlize “ œdème main massage” you I’ll find videos that illustrate the good advice you are given here. I hope you find help quickly
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Old 04-16-2019, 02:02 PM #8 (permalink)
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Default Re: need for advice

no he dont have hospital bed or a recliner

MarieLaure Karen Laurie thank you so much for help me out and give me advice
thank you
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