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How to live when doctors do not have the practice of treatment ALS?
Good day! My mother is 62 years old, she was diagnosed with ALS a month ago ( sorry for my English). The first signs of muscle weakness began in February this year. In Belarus it is impossible to find a doctor who would treat and maintain the health of my mother, what should be physical therapy, there’s no speech therapist who would know how to deal with such patients and in general neurologists have no practice of treating patients with ALS. Two days ago she started having problems with speech, probably soon there will be problems with breathing. The doctor has prescribed Riluzole, Carbamazepine, Neuromedin, Choline. What is possible for the patient to undertake in order to maintain his condition? How to live when doctors don’t have the practice of treatment ALS?
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5 Replies
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Hi Galina,
I am not a doctor but what was prescribed by the doctor of your mum, seems to me quite sensible.
In France, my uncle who died nearly a year ago, had only Riluzole, vitamins and anxiolytics. His nephew who died 10 years ago was in a similar situation.
As people often say, some key points are important to survive:
* Plan ahead of the disease progression, get whatever will be needed in three months.
* Help breathing, there are several means depending on the severity of the case.
* Help feeding, pALS have difficulties to use their hands and often they do not swallow their saliva, so feeding is difficult, people can die simply because some food goes in the trachea. Again, there are several means depending on the severity of the case.
* Helping to communicate. There are phone applications that helps. The speech therapist of my uncle was stupid enough to ask him to practice until the end. What means practicing when it is hard to breathe air as lung’s muscles became very weak? There are some better means to communicate. My wife made a sheet with the common words (and situations like “I want to rest alone” or “I want to pee” and it was OK.
* Keep in mind that once someone is in wheelchair, everything is much more complicated. And it is very boring. My uncle read a book every two days on his kindle and watched TV, even if he had problems with his eyes. Some pALS had wrote books, others have invented stuff.
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Galina, I have been living with ALS for the past 9 years, and fortunately have found a way to maintain my mobility, speech, swallowing and attitude.
For assistance, support and resources offered to international patients, I suggest you connect ALS Worldwide. They offer free information and referral advice, plus can connect you with ALS specialists (hopefully in your country).
Going forward, advice all depends on your mother’s current health status, her current strength & weakness areas and – – her attitude.
Everyone begins differently, so it is best to focus on what is needed “now” while still planning ahead. For example, where is the muscle weakness? Hands or feet? Neck or back? If feet… then do range of motion exercises for the feet, have her walk with a walker and do a daily mild exercise routine to keep the rest of her body strong. There are a lot of options and ways to “keep going.”
You both need to learn as much as you can about the nature of ALS. Not heresay, but the “why” and what is happening in the body.
Our forum members are a wealth of resource and can share their experiences with you. What are the 3 most important questions that you have right now?
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Thank you very much for your attention and answer! My mother was diagnosed two months ago, and she noticed her first muscle weakness at the beginning of the year. Today, she has weakness in both hands, but she herself can button up and write messages, she has a limp on one leg, she has a weakness in the hip contour, but she can also take care of the garden and the echoes. I was ready to accept her condition, I thought that the progression slowed down, but two days ago her condition worsened and went into a panic (! We partly changed the dinta to a more proteinaceous one, take riluzole, neuromedin, carbamazepine (although it doesn’t relieve muscle spasms very much shins at night), dietary supplements DMAE, SAMe, Choline & inositol, omega3,
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Every day, germinated grains and fresh quail eggs on an empty stomach. All information has to be found on the Internet, unfortunately, and not from doctors (the most important question that worries me is to slow down the progression, I’m more panicked than my mother is ready to change places with her if it were possible (!
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I hope that, “germinated grains…and fresh quail eggs,” is an idiom or local saying in Belarus and not a special diet! 😉 😉 ha ha.
Seriously though, it sounds like you and your mother are following a good medical plan and that she is remaining active (yet safe).
We all share your hope to slow progression of symptoms. They are so different from person to person. However, there are actions you can do to “help.” These are:
– Proper medication (Riluzole is taken by most patients), eat nutritious foods, stay active or do specific physical therapy, sleep well and avoid becoming isolated from friends and family.
Massage helps, stretching, staying involved in projects (gardening in her case) and not dwelling on the past all are good to follow as well. Avoid crazy diets, too many supplements and expensive “miracle cures.”
We are here to support you and share our thoughts.
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