ALS patient

I first met Mr. G in December 2021 in the outpatient part of a hospital where he was seeing physical therapists. Because this hospital is more than 50 minutes driving from my home, I usually was reluctant to go there. But I became sympathetic to Mr. G’s situation, and accepted many assignments there in order to help him a little. 

Mr. G was a skinny middle-aged man, and always accompanied by his wife. Although it looked like he walked and talked fine at first, I soon noticed that his gait and posture were very peculiar and his therapist only gave him basic exercises. Later, I found out that Mr. G had ALS- amyotrophic lateral sclerosis, a devastating disease which will lead to loss of control of all the muscles in the body. Despite its scarcity, it is a famous disease. Dr. Stephen Hawking had this disease, and a famous activity, ice bucket challenge, was designed to help raise funds for the research for this disease.  

Mr. G and his wife were both from Fujian, and came to the USA more than ten years ago via relative immigration through Mr. G’s sister. In the US, he worked in Chinese restaurants. His wife also worked, but I am not sure about her job. They had one son, who attended a good university majoring in electrical engineering. So, they had jobs in the USA, bought a house, and got their son a good education. Everything looked promising. They expected to slow down and enjoy life once their son graduated and found a job. Mr. G likes fishing, so they planned to have vacations in Florida. 

However, fate struck them in a most unlikely way. Mr. G was diagnosed with ALS, just before his 50th birthday. First, his arm did not function well, slowly he lost control over more and more parts of his body. When I first met him,  about one and half years after his diagnosis, he already could not move both his arms and had difficulty moving his neck, though he still could walk. That was the reason he walked with a strange gait. His arm dropped in front of his torso, and did not sway when walking. His head was also often dropped, and whenever he needed to lift it, he could only do it with such a  big effort that made the movement unsmoothly and unnatural. In addition, because the muscles connecting his arm with his torso were too weak, there were large gaps in his shoulder joints, causing discomfort, pain as well as easily leading to dislocation of the shoulder. Therefore, the physical therapist used tape to stabilize his shoulder joint. But the tape irritated his skin, so she switched to slings. Although Mr. G was happy with his slings at first, he soon stopped using them because it was inconvenient. 

His shoulders were far from the only parts of his body bothering him. Since most of the muscles of his body did not function, he had pain all over his body. For example, he could not sit for a long time, because his back and butt hurt. He could not lay on his back for a long time, because his neck hurt. There was only one position in which he could sleep comfortably, lying on his left side, because he had already lost all sensation in his left arm.  

ALS also began to affect his internal organs. Mr. G had difficulties to pronounce clearly as well as swallow solid food and liquid. Although his wife and son could still understand him, it was more and more hard for me to interpret his words. So his speech therapist was already trying to teach him how to use eye movement to express simple ideas. In addition, his swallow was a big problem. Because of the weakness of his throat muscle, each swallow was a strenuous task for Mr. G. It was typical for Mr. G to take one hour to finish his meal. His speech therapist said it was possible that the energy Mr. G got from his meal cannot compensate for the energy he used on swallowing the meal. Therefore, the therapist suggested he get a PEG tube (percutaneous endoscopic gastrostomy tube), so that he could get all the nutrition from the tube, and only eat his favorite food for pleasure. Both he and his wife liked this idea.  

It was easy to imagine that since he could not move his arms and hands, Mr. G almost could not do anything for himself. Therefore, his wife or his son needed to help him to eat, drink, wash face, brush teeth, go to the bathroom and take a shower et al. Also, because of continuous absence of muscle contraction, Mr. G has severe muscle atrophy. As a result, Mr. G lost lots of weight. The best way to abate the speed of muscle atrophy is to gently massage each muscle everyday. It is an onerous burden for any family to take care of a patient with ALS. However, when asked what kind of help they needed, Mr. G and his wife just wanted a hospital bed and an electric wheelchair. They did not apply for additional financial aid or any helper. They said that they could handle it within their family. But, their family was not rich, so Ms. G still has to work on weekends when their son could take over the task of taking care of Mr. G.   

All the therapists they met in this hospital tried their best to help Mr. G. But because of his condition, Mr. G could not exert himself at all. Usually, physical therapists would encourage their patients to work hard on their bodies until they felt a little tired. Because if it is too easy for patients, then the exercise is not enough to make any difference. However, if Mr. G over worked his muscle even a little bit, he would cause more damage to his nerve system instead of stimulating it. For example, one day he exercised for 10 mins on a cycling instrument and did not feel tired at that time, he had much more muscle spasm the next day, and his therapist never let him do such exercise anymore. 

Mr. G had physical, occupational and speech therapy in that hospital. But since he needed to be very careful about his exercise, he could not benefit from them too much. For instance, since he could not move his arm, this occupational therapist only educated him and his wife about ALS, and showed his wife how to massage him, then terminated his appointments. His physical therapists also reduced the frequency of the appointments from twice a week to once every two weeks.  

But at the same time, Mr. G’s condition deteriorated quickly. When I first met Mr. G, he could walk OK without any help. But 4-5 weeks later, his left leg became weaker, and he began to drag his left leg when walking. Thus, he was likely to trap on his feet, and needed a person to walk along with him to prevent falling. At the same time, he began to have trouble moving between bed and wheelchair. When one of his therapists taught him how to move safely from bed to wheelchair, I told her that it was unnecessary since I saw he could move smoothly only one week earlier. But to my surprise, I soon found out that the therapist was right, and Mr. G did need this exercise.     

Because of the fast development of Mr. G’s disease, all his therapists and doctors agreed that he was in desperate need  of a hospital bed and an electric wheelchair. However, his insurance company took a very long time to review this request. Mr. G’s physician first applied for these equipment on his behalf in November last year. Three months later, Mr. G still had not not gotten anything. I understood that both hospital bed and electric wheelchair cost a large amount of money, but it is very important for Mr. G’s care and well-being. His therapists and physicians all tried to push the insurance company to expedite the process, but nothing worked. 

Despite that Mr. G had such a devastating disease and was discomforted all the time, he usually had good spirits during therapy sections. He laughed at the therapist’s jokes, and sometimes he made fun of his wife and said that she tried to kill him by her massage. Only once, I saw him cry. That time, his speech therapist asked him what he mostly wanted to say to his wife. He kept silent for a long time. Then, he said with tears running down his cheek that he wanted to thank her for her companion and help after his diagnosis and he loved her deeply. His wife weeped too.  

The last time I saw Mr. G and his wife, they were talking about a future appointment with an expert in ALS. I do not know if this ALS expert could help Mr. G. I want the best for him and his family, and may God ease their suffering.