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ariet

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I’ m here with you, for my precious mother, who is 69 years old; she was diagnosed with Als in September 2016. Until then, she was a very very active person. All those months we have made great efforts to slow down the disease, but it did not work. Her symptoms started in April 2016, in September she couldn’t walk anymore, and now in February she needs the mask for breathing most of the day and she is very weak. The disease is so rapid to my mother.
She follows a diet with antioxidants and vitamins; she was visiting a rehabilitation center 3 times a week for 3 months. She made a therapy with stemcells, the first input was 2 weeks ago. She is taking at the same time, for 3 weeks now, the antiepileptic drug retigabine, which is causing her headaches.
I can’t understand why the disease did hurt so fast her breathing muscles which are the vulnerable point of the patient. Could it be because of the intense physiotherapy and ergotherapy? Could it be because of the disability to walk and go out? Could it be because of limited fluids-water etc.?
Is there any guidance for keeping the breathing muscles? She is breathing rapid. Perhaps some exercise with deep breaths could help?

Thank you all,
ariet
 

lgelb

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Hi, Ariet, I'm sorry to hear about your mother's disease and progression. There is hope that retigabine can help ALS, but if it is causing pain, it may be best to stop. There is nothing worth trying so much that it is worth more pain, as sadly her life is limited.

Some people's breathing is affected earlier and more severely than others, but we don't know why. If she is breathing rapidly, possibly adjusting the settings on her breathing machine may help more than anything as the settings often need to be adjusted throughout the lifespan. She should not have to try to change her breathing while on the machine.

Hydration is very important for everyone and if she is not drinking or eating enough, a feeding tube may help, if she wishes it.

Intense physiotherapy is not advised in ALS as using the muscles to exhaustion is thought to lead the nerves to be destroyed faster. Keeping her involved with her friends and family, animals, nature, music, going outside when she can, etc. as I am sure you are doing, are ways for her to feel more happy and that helps breathing a bit as well. But I would ask about the machine settings first thing.

Best,
Laurie
 

ariet

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Thank you Laurie for your kind useful response and Udo for the relevant information,
My mother’s continual dependence to the respirator in the last 4 days is unexplainable.
The lung specialist says there is not real need yet to use the respirator all day long. His direction is to use it 2 hours in the noon and all night.
But she feels a pain under her breast and the mask alleviates the pain, because it controls the breathing rhythm and relaxes her. Without the mask her breath is rapid.
The neuro believes this pain is not affiliated with the antiepileptic drug. He also believes it is not a sign of the damage in the breathing muscles. But, from our experience until now, every time mom was feeling pain (e.g. in her legs) it was followed by damage of those muscles.
Maybe this time it is due to her emotional condition, since she is not taking any antidepressant.
We are trying to convince her not to get dependant to the respirator.
As for the walks outside home, she is not willing to go out, because she feels weak.
Also, we are using molten food in the noon to be able to give a certain amount, although she can chew. But with water she complains that it brings her drowning.

Thank you all,
ariet
 

affected

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We are trying to convince her not to get dependant to the respirator.
Sorry to welcome you here as you deal with this disease.

May I ask why you would try to convince her this?
I would gently suggest she should be kept as comfortable as possible both physically and mentally and if her bipap gives her this then it is what she needs.
 

lgelb

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The lung specialist and I will disagree, then. The disease will only progress more rapidly if she does not use the machine, if it helps her feel better and reduces her rapid respiratory rate, which increases the work of breathing. Also, the machine helps her expel the dangerous CO2 and avoid hypoventilation. The idea that by limiting it, she will stay stronger is archaic. I strongly suggest you disregard that recommendation or seek an alternative opinion.

In short, it is perfectly fine if she is "dependent" on the respirator, just as it is fine for you to eat when you are hungry and sleep when you are tired. And if she uses the machine as her body wants, and if she feels better and less tired, she is more likely to want to go out and do more. Is her machine portable for her to do that?
 

bkite

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I can't emphasize enough, the need for lots of hydration. I have 60 % lung function. I use a ventilator for sleep. During the day, wherever I feel short of breath, I have water given and I am good. I go through 80 to 100 ounces a day. This wouldn't be possible without a feeding tube.
A feeding tube would be my first priority in your mother's case. No exercise will compensate for dehydration.
 

lgelb

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Good point, B. Ariet -- you mentioned her being unable to drink water. Can she do thicker liquids, like milk shakes or soups? Hydration is not optional if she wants to keep going. She should be informed about the feeding tube option as it, like any procedure, requires careful consideration and the right radiologist or surgeon.
 

tripete

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There is no rhyme or reason to why or how what muscle group will be effected and when. Not that is currently know. I was a Triathlete and Marathoner. I had an FVC of well over 100% of normal at my first test, but that was when I knew I had breathing issues because it did not feel the same as normal when I ran swam or biked. Better than a year of test and I was diagnosed with respiratory onset ALS. Now my breathing is considered by the docs/wackadoodkes to be critical.

Obviously I was in shape and things worked well. But the disease struck where I was strongest. Now with my breathing gone my hands, legs and bulbar are following. There is no slowing it down for me. My conditioning and shape may have bought me extra time as it had further to go but I am still in the 2-5 years until death zone.

I now use my Bipap all but a couple of hours a day. If I don't I feel like I will suffocate (air hunger) and the quality of life with it on sucks. I cant talk to my wife or just enjoy smells and it irritates my face. I would not recommend anyone use one except to help with the air hunger.

Long story short. She hasn't done anything that we know of to put her in this place and there is nothing she can do that will have any appreciable effect on slowing it down.
 

Kathy K

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Pete,
I am also now using the bipap most of the day. Breathing has gotten much worse since I was hospitalized. You are right about quality of life but it beats the alternative. ALS doc has made it very clear that if I were to catch a cold it could very well turn into pneumonia and I would require a vent. I go back and forth on that decision.
 
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