reflection and rant

[andrewf]

poet1973 posted:

Why is life so difficult? You think your past most of the hurdles and then the universe throws another wrench in the gears! Wife and I thought we were doing pretty good, kids are grown and thought we weren't going to have to worry about them. Thought that we were fixing to be to where we could go and do what we wanted. Then last year at this time got my ALS diagnosis. I worked up until November, on my birthday, without the use of my right arm because I thought I had to keep moving. The worst is not being able to hold my wife nor the grandkids. Celebrated 30th wedding anniversary yesterday. Not much of a celebration because I don't want to be a burden but I cannot see what's coming! Sorry just had to get it off my chest so to speak!!!
Thanks

I wanted to reply but could not since it was locked. But this sentiment is something I think about. My father in law is the PALS in my life, and I'm a part time CALS but he fortunately has a caretaker aid 12 hours daily. Hes almost 80.
I'm 45. But every time I make a remark that envisions a future of old age, a future of leisure time, a yearning for something to be easier simpler or different.... I remind myself that one must live for the day that is now. Obviously not just forget about the future as a plan, but always remember that "man plans, God laughs." I'm not working some job I hate just so I can "retire" some day. That day may never come, for some people. Even if it does, one would have squandered the best years of life doing so. The unexpected should be expected. No man is promised tomorrow. I'm in pretty good health. That could be upended in days or weeks and BAM. My response to this, not living in fear, is gratitude. Gratitude every day for my health, family, every blessing in my life. If stuff ever goes sideways, and someday it will, I can then say "I didn't take things for granted, I didnt waste enjoying it."
My father in law looked at me and said "I know I'm dying dont know how long I have" and all I could think of was the only difference between us was time. Cause some day the worms will be crawling through my skull, as sure as the sun comes up every day.
It also makes me think....would one rather have ALS or...a bus hit you or a lightning strike or a massive fatal heart attack. The slow exit or the rapid exit. Not like we get a choice right? A slow exit and time to organize ones affairs and wind them to a close....is a blessing. But too long seems like a terrible curse.
One thing I've realized...while I've never used nor had interest in any drugs like marijuana derivatives for instance, if I had a disease like this, something chronic progressive and fatal, I'd basically want to be high ALL the time. "Tune in turn on check out. "
I teach my kids that life is not fair....but that unfairness or high cost has not made living any less popular!

 

[Tomswife]

Gratitude is important and good. Courage is essential. How does PALS find the courage to live each day with ALS? My PALS, Tom, does not want to be HIGH. He wants to be present and enjoy as best he can every moment. He is in hospice care now. He does not want to tune out, or put himself in fast forward. He wants to live each day and be aware. To me, that is courage.

I tell him many times each day that I love him. I give him Bipap kisses. He sees our daughter and adorable grandchildren. Hi. Poppop! I give him messages from people who wish him well. We pray when our Deacon visits and watch Mass livestreamed.

Love and good care ( that involves many things) keep our PALS strong and comfortable, which gives them the courage to be stuck with ALS. Yes he is stuck. Stuck in bed. But ALS is not stuck. ALS creeps forward stealing life and limb.
My PALS has incredible courage. His spirit is strong as his body fails. And there are many PALS here on this forum that are living as best they can, with courage.

My rave is for the strength and beauty of the human spirit as lived by OUR PALS each day

 

[KimT]

I'm in horrible pain. I've been in pain since early in my diagnosis. I progressed slowly until this year. It's nerve pain. It feels like my legs are on fire. I don't have peripheral neuropathy. Mayo came to the conclusion that it is secondary to ALS. It happens in some. I have a hard time enjoying anything, even with pain meds....strong ones.

In addition to the nerve pain, one knee is shot and I've developed osteoporosis. Sleeping is a constant challenge just because I have pain.

Frankly, I'd rather go fast. If not, tuning out sounds good to me.

Up until a few months ago, distractions worked. Relatives visiting, television, helping others on numerous forums and FB groups, participating in the running of our condo association, writing, etc. Now, I'm not sure what to do next. I dread waking up. I dread trying to fall asleep.

Every PALS has a different experience. At least, in my case, I don't have close family to pull down or bankrupt.

 

[North Georgia]

Kim,

I can somewhat relate - at least on the intractable pain. I've got horrible - neuropathic - pain in my tongue which makes talking, etc very difficult. So, I've largely withdrawn from society and am super depressed. Two major clinics dismissed my pain condition as " not ALS", etc. It seems to me that if motor neurons are failing then it would follow that the sensory neurons could be aggravated as a result.
It is frustrating that many ALS clinicians have such narrow criteria and dismiss pain as part of the equation.
I, like many of us, was wholly unprepared for this. I some assets but not enough for 10 years - am working on social security. It has occured to me that given my low quality of life it might be best to go quick and be able to leave something for my daughter.

 

[Tomswife]

NG. My guess is that your daughter wants you to focus on you. That is how our daughter relates to her father's ALS. She travels an hour one way to see him 2 or 3 times a week. Our daughter understands this disease is terminal, but she wants her Dad here to see her and her 2 children when she visits. I hope your daughter feels the same way. Life trumps money, always.
I am sorry you are in pain. Pain makes living very difficult. We have several pain meds for Tom. At this point we prefer to have him out of pain, but awake and aware. We have been able to do that. I hope you can find the right meds to help you.

 

[North Georgia]

Tomswife, Thank you for your encouraging words. It's good to hear that your daughter understands the disease and takes the time each week to see Tom with your grandchildren. My daughter is on the spectrum and is going to be a junior in college. I'd worked out of town the last several years and had not had enough time with her prior to getting hit with this. I love "Life trumps money, always".... thank you so much for this.