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Coping with age & serious illness. Anyone positive want to share?
Aging Well | Last Active: Apr 17 9:27am | Replies (121)Comment receiving replies
ALS is a vicious disease. In 2012, my wife went a battery of tests. It seems ten different diseases have a list of tests and symptoms pretty much the same. Nine of the ten respond to the tests and can be eliminated or better yet, cured. At the end of the year, Mayo doctor called us in. He was upset, sad, and nervous. By elimination, you have ALS (We also call it Lou Gehrig's disease). The average life span is two years. Most are less and a few last longer. She lasted two, 8 months.
I won't call what she did as living. One of our daughters became her care giver and kept a journal of her progression down. At the same time, the Dean of Men at a nearby college also had ALS, He lasted 4 years. Stephen Hawkins went for over twenty years. She had the version that slowly kills the voluntary muscle nerves.
We have voluntary and involuntary muscles. You can hold your breathe, so it affects your diaphragm. You cannot control your heart rate, your heart keeps beating. Walking becomes difficult and impossible. Another way to look at ALS, the muscles controlled by the brain are affected. The ones contro;;ed by the spine are not.
It is important to maintain a positive attitude, to keep your life going. The brain allows thinking just not talking, doing. So stay positive and happy.
Replies to "@ellu ALS is a vicious disease. In 2012, my wife went a battery of tests. It..."
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@rollingf
Hi there, thank you for your response sharing your bitter experience with ALS. It is truly a torturous illness, and a real chameleon, because it affects different people in different ways. In my case I have Bulbar ALS, which starts in the lungs and swallowing muscles. I do not want to die gasping for breath and unable to swallow, but in Australia we now have what is called Voluntary Assisted Dying. If a neurologist and a second doctor agree that you have less than 12 months to live, you can contact the VAD Navigators and arrange to be issued with pills which will end your life. These you keep in a locked box at home, and it is up to you to decide when your symptoms have become so unbearable that it is torture, and you would prefer to end your life painlessly. You can do this alone, or surrounded by family and friends. You are supervised by doctors evey step of the way, and in my opinion is a humane and sensitive way to end a life which would otherwise end in unbearable suffering. I know that some religions do not believe in VAD, and it is not for everyone. Some people apply for VAD, get the pills, but end up not using them. I don't know what the system is in other countries, but if you or someone you know is facing the horrible end-stages of a terminal illness, it might be something worth investigating. I do not intend to throw away my life, I plan to live as fully and positively as I can in the time I have left, watching my adult children find partners and follow their life paths. I have told them about my decision about VAD, and one son said to me "well that is better than spending 10 years in a home with dementia and not recognizing us!". Every person makes a personal decision which is right for them, but I just wan ted to put the option of VAD out there so that people could be informed about a choice they have. I can honestly say that I am happy with my life atthe moment - I catch up with friends and family, I read and go to concerts and the theatre, and although I do not have the energy to run around as I used to, my life is full and meaningful, Whoever you are, reading this, take heart and enjoy the beauty and wonder of all the things in your world around you.
@ellu