The life expectancy of an AlS patient is ususally 2-5 years from the time of diagnosis. But it is variable with different conditions of the disease and the care to the patient. Some people with poor financial condition cannot offer expensive medicine and/or with less family care would die soon within 1-3 years. But with a proper care, even with less medicine, many people can live more than 5 years, some are even over 20 years.
ALS still doesn’t have a cure with any medicine. We cannot choose the conditions of the diesease: Some people’s ALS can go fast and some go slowly. But if We want the patient live longer than a common expectancy, we can give the patient a proper care to delay the death. If you have noticed that some people with ALS often go to ALS
forum / ALS communication groups, you can see their chatting records / topics 5 or even 10 years ago, and now they are still active there, they live longer because they know how to take a proper care. A study shows that prevalence of ALS cases in Israel is much higher than in USA and Europe because the Israeli survival rate is significantly higher – their people with ALS live longer with a better supportive treatment provided by the Israeli health care system. The incidence in Japan is similar to that of Israel due to the same reason (Refer to Study: Israeli ALS patients survive longer than anywhere in the world).
But the government health care system is not the only way to the ALS patients. Just like what I said above, the people with ALS and their family members can learn the care experiences & skills from doctors and other ALS patients, buy nutritious food/medicine, and take some surgeries if necessary.
Here are some experiences about caring my oldest cousin who’s female and about 50 years old, she got ALS about 5 years ago and now still able to send messages by cellphone with knuckles.
1. Riluzole, by now the only drug for ALS, was approved by the FDA in late 1995. This drug was shown scientifically to prolong the lives of ALS patients by at least a few months. It cannot cure ALS and would show different effects on different people. It’s suggested to have this drug, but if you cannot get it from the government and it’s too expensive for you to afford, my personal idea is to skip this drug and save the money to buy some nutritious foods.
2. The surgical of gastrostomy
The people with ALS will sooner or later progress to the point where it interferes with a person’s ability to swallow food. When people cannot absorb enough food (nutrition), the body will become weaker and weaker, and the disease will progress faster. Also the choking(bucking) due to the difficulty of swallowing will increase a risk of pneumonia. All these will shorten the life of the patients greatly. So inserting a feeding tube through abdomen into the stomach for injecting the liquid nutritional supplement and even the medicine is very important and necessary.
Actually when the ALS patients are still able to eat and drink, the doctor may suggest a gastrostomy surgery based on the disease progression. The patient is usually hard to accept having an opening on the abdomen because they still hold the ability of eating. But the fact is when you have the difficulty of eating, you have already become very weak and the risk of surgery would increase a lot.
Among the points of caring a ALS person, based on my personal study, the early gastrostomy surgery may be the most important factor to maintain and prolong the lives of ALS patients. Actually, even installed with a tube on the abdomen, the patients can still enjoy the food with mouth if they still hold that ability.
3. The ALS Diet.
The people with ALS are weak and thin. Although they are losing the movement ability because of nerves damage, the intake of nutrition will resist or delay the progression of nerves damage. The nutritious food includes high protein sources like beef, chicken and eggs; Healthy fats like coconut oil, olive oil and cultured butter; Fruits and
vegetables are also necessary. The ALS patients can drink the juice if not that convenient.
A traditional Chinese pork soup is actually very nutritious and easy absorptive to the ALS patients. A Chinese herb who’s called as “Huangqi” (Radix Astragali) is often put into the pork soup for it helps muscular weakness and fatigue in an explanation of traditional Chinese medicine. If you don’t know it or cannot get this herb, you don’t have to put it into the soup, just let you know that many Chinese ALS patients drink Huangqi soup. But a common pork soup without any herb is still surely a very good nutrition to the ALS patients.
4. Moxa and Moxibustion
Moxa and moxibustion really help based on the experience of my cousin. I personally consider it helps much more than Riluzole.
My cousin’s big toes couldn’t move even in the very early stage, but after dipping the feet into the hot water with moxa leaves for a few months, the big toes have been able to move for serval years to now. This recovery of lost function is not transient like some other cases that lasting only a few months on ALS patients. Although my cousin’s ALS has been actually progressing, but the moxa bath / moxa foot bath should be helpful at some points. (Refer to Traditional Chinese medicines and moxibustion for ALS patients.)
One day I visited my cousin and found her speaking has been very indistinct. But after I helped her to do the moxibustion like the above picture, she spoke much more clear that I didn’t need to say “pardon me?”. The moxibustion can not only remove the comfortlessness and some diseases, but also make the body run smoothly to regain the energy (Refer to my article of “how to do moxibustion by yourself “).
5. Meditation (Qigong)
Sorry, meditation hasn’t been tried and proven by my cousin. I suggested her to do meditation, but she just didn’t. I still mention it here because every time after I finished a meditation, I felt energetic! And “energetic” is the same feeling that most of the people who do meditaon have. So what if the ALS patients who are usually very weak all the time can be energetic after meditation?!
Based on my actual experience, the meditation is not sure to sit like the above picture. The basic of the meditation should relax and don’t think or focus on a point of your body. You can do the meditation at a position of sitting, standing or lying. As I know, an old man exercised meditation at a lying position for many years, had a great achievement and then wrote a book. So, meditation is easy and good for ALS patients to do themselves. Don’t be fooled that meditation is very mysterious and you need to pay a lot for a guide. The result and theory may be mysterious, but the way to do meditation is simple!
PS. I hope my this article will be helpful to other ALS patients and their family. People can share it with a link back to healthcarenote.net.