Coping with age & serious illness. Anyone positive want to share?

@ellu
I love your post! I have known 2 people with ALS and know how having the attitude that you have is so important. I don't know where you live nor your age, I am 86, live in Canada and have peripheral neuropathy. It helps me to put things in perspective when I read of your wonderful outlook. Blessings to you!
Betty

@greengold
Hi Betty, thank you for your kind comments! I think in the northern hemisphere you call my illness ALS - we in Australia call it Motor Neurone Disease. It is heartwarming to think that someone in Canada is reading my post! Fortunately not all of us have to face terminal illnesses, but in the end we all have to deal with ageing and the eventual end of our lives. I have come to terms with the fact that I will never reach your age of 86, but I am determined to live and enjoy every day left to me in any way possible. I hope your peripheral neuropathy doesn't restrict restrict your life too much. I am happy that I am leaving a legacy of four adult children, who are all kind, honourable, decent human beings, and will continue the chain of life after I am gone. I wish I could see into the future and see what happens to them in the rest of their lives! It is a beautiful, sunny late-summer afternoon here in Melbourne, Australia. I am 72, my symptoms are still pretty mild, and my philosophy is to do at least one thing I enjoy every day. This morning I had a coffee and chat with my sister-in-law...
Best wishes to you,
@ellu

What an uplifting post! Send some of that warmth to Michigan!

@ellu

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.

I am 67 yrs old and have last stage of lung disease and was diagnosed bipolar when I was 30..I had a manic episode that lasted 3 weeks in hospital and about a year to recover....couple years ago a hospital stay of 3 days of another mild episode...I am also recently on oxygen...so I have dealt with a lot here...

Also.....had bells palsy on one side of face.....now...is this all....??...lol

I’m close to your age and my husband just had open heart surgery and anxiety has pretty much taken over my life. I have health issues and my anxiety has made things worse. How do you stay positive when there are so
Many challenges?

@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

@jorenee
Dear Jorenee, I can emphasize with your experiences of bipolar disease and serious illness. I have had bipolar since I was a teenager, but was not diagnosed until in my 40s. My life had been a roller coaster ride of mania and depression, but I have now been with the same psychiatrist for 20 years, and after many, many different medications and several stays in psychiatric hospitals I have finally been pretty stable for about 5 years. I still take medications, but I am on safe ground now, and am trying to fully enjoy life, especially since I was diagnosed with ALS last year and use a ventilator at night. Sometimes life just doesn't seem fair. My mother is still with us, at the age of 96, and has never had a serious illness in her life! Amazing, as she lived through war-torn Europe in WW2 and came here to Australia as a refugee! You have a lot to deal with, but please try to look up, not down. I am sure there are things in life you can still enjoy, even if that is just a cup of coffee and a chat with a friend. We are all in this thing called 'life' together, and I want to let you know that there is someone in Australia who has read your post and is thinking of you and sending you good vibes.
@ellu

@djg1951
Dear djg1951, I was touched to read your post. Anxiety is a horrible thing, at its worst you can feel as if you are doing to die because you are so worked up and can't catch your breath. Even when it is not that extreme, chronic anxiety can suck away at your life and make you miserable.
It is not possible to just get rid of that anxiety by wishing it away. I have an adult son who suffered from anxiety which crippled his life. He made an appointment to see a psychologist,
and that changed his whole life. He still sees his psychologist from time to time - she understood his issues, spent a long time talking through what was affecting him, and taught him simple strategies for dealing with his anxiety. If I were you, I would have a talk with your GP, and ask him/her to refer you to a good psychologist in your area. Your issues won't go away with one session, it might take time, but it is just as vital to take care of your mental health as your physical health. By the way, a friend's husband had a heart triple bypass operation 2 years ago. He now enjoys going on long hikes in the countryside, up to 8 miles a day! Don't give up on your husband, make sure he does all his rehabilitation exercises, and he will be back with you. The way to stay positive is to look for and enjoy the good things in your life, and have hope and belief that your situation can get better given time. Rach out to family and friends, ask if you can talk things over with them, and you will be surprised to find out how many people want to help support you. You are not alone.