Sunday, March 30, 2008

ALS and Me

ALS is a devastating disease that cripples the body by affecting the lower and upper motor neurons. In my case, it has started slowly with weaknesses of my right hand. It has now affected my breathing (with a need for a breathing machine), swallowing of liquids, and some speech. It has also given me leg pain, spasms, a slower gait. It usually strikes ages from 40 to 70. I’m 45 years old, with two teenage boys who still need their mother to drive them around. I use a steering wheel knob to drive my car.

With this diagnosis, I am expected to be completely paralyzed before reaching my death. Prior to this formal diagnosis in late 2005, I worked in hospitals as a respiratory therapist, helping both young and old patients with their breathing issues. It caught me completely off guard when I found out I had ALS and that this disease can actually kill me within two to five years.

I admit the fact that there is no such a thing as a “pretty” death. However, I have come to the conclusion that this disease is like as if you were sentenced to life in prison without the possibility of parole and on top of it, you know that you are going to be executed in a slow, unusual and cruel manner. I sometimes describe the way I feel about my breathing problem as a boa constrictor wrapping around my chest walls, taking away my ability to take a breath.

People with ALS often struggle with the idea that they are going to become completely dependent on their family members. I'm often left feeling guilty about the disease, when I know that there was nothing I did wrong to cause this upon myself. Every day, every week, changes such as losing strength from muscle atrophy, bring on new challenges to adopt. The other day I was so tired and exhausted, I could not even hold a utensil for long, and I had to allow my husband to spoon feed me like a baby.

Imagine! And I ask you to put yourselves in the shoes of an ALS patient. At advance stages, people still can live quite a long time (in many cases extending their lives 10 years plus) if they have an elective tracheostomy, which requires a surgical procedure to open up the wind pipe to go on a full life support respirator machine. Long before this happens, one will also require a feeding tube. The paralysis marches on and overtakes your whole entire body. The only method of communication may be by blinking your eyes. One may then be left in what is called a locked-in syndrome, where he or she will not be able to communicate with the outside world.

I was told that I had a slow progressive type of ALS. However, with this disease, nothing is ever slow enough. I ask you to join me to open up your hearts to gain more understanding with this bleak picture for all people with ALS and the huge challenges that their families face as the care giver. I would like to encourage people out there to gain interest in learning more about this orphaned disease which was first described in 1869 by the French neurologist, Jean-Martin Charcot. Without the development of medications that can halt or cure the disease progression, the chances of my two teenage boys losing their mother before they graduate from college is realistically very high.

Juri Kameda


ALS Grumpy said...


You are another that puts to bed the view that this is an old person's disease. The impact on young people, both fathers and mothers is especially hurtful. I hope your slow progression continues to be slow and your life as full as is has been until now.

Jenny said...

Thanks for your note. Life is definately not fair. But we just try to face each day with reality, love and laughter. Pat is an amazing guy so it's easy for me to do what needs to be done.

I have so enjoyed your posts on LWALS. YOu bring a value to the message board with your professional experience and I have "consulted" you several times thru old posts! Thanks so much for all you do while you try to deal with your own disease.

Take care, and here's to fighting the good fight!

Rehashi ma said...

Great thoughts you got there, believe I may possibly try just some of it throughout my daily life.
Contact Us - Pals Solutions