Just another rant

[poet1973]

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

 

[affected]

being able to vent out how you feel is really important!

Life can throw huge suck crap at us for sure. It is valid to be angry about that so I totally hear you.

 

[poet1973]

yeah I'm always telling everyone "it's OK to not be OK " however I can't seem to take my own advice?!

 

[ShiftKicker]

@poet1973, It's definitely easier to give that advice to others than to take it yourself in my experience. Particularly if you're the type of person others usually come to for support during difficult times. It can be pretty hard to change gears and do the leaning after a lifetime of seeing oneself as the rock upon which others lean. You're amongst people who understand for sure. Vent away.

 

[Mary2]

We've been married 30 years as well. My son was in college when my husband first had symptoms in 2016. I thought we would be doing small, inexpensive outings and maybe a couple of nights on the coast here and there. We were able to do a few things, but basically the main goal became for my husband to get to work. And since about 2019 and 2020 we have basically been in the house. The room my husband has his eye gaze in has nice light and a view of trees. This has helped a lot.

 

[Tomswife]

I have been surprised at how difficult the ALS journey can be. The diagnosis is elusive and takes many tests. We live in the NY Metro area, so we have options for Medical care for this complex disease. HOWEVER...

- Experienced physicians may have some MND experience, but not indepth ALS.
- The clinics in our area are understaffed and overwhelmed, and trying to split their attention between patient care, clinical trials and research support.
- The disease can move at any speed and pause then move again.
- You desperately need DME one day, that you will not need a month from now.
- Out of pocket home care is expensive and experienced aides are hard to find and keep. Agencies have minimum hours per day and week.
- Most homes are not set up for a PALS to live in.
- Few understand what a big deal it is to get a bed ridden PALS dressed and out the door to go somewhere.
- Only PALS knows what it feels like to have ALS each day. And everyday is the same, and yet different.

Rave. Thankful for physicians who use telehealth.

Kathy

 

[Doing My Best]

Amen, Tomswife. All true. And I could expand to say few understand what a big deal it is to manage any of this ALS stuff. Like why would it take 90 minutes to get someone to bed, or two hours to get up, showered, dressed, and "ready" for the day? Rave on.

 

[Tomswife]

Poet1973. Blessings on your wedding anniversary. I would love to be held by my husband, but it has been months. When he used to be able to hold a weak stand I would have him lean on me. It was the closest to a hug we could get. This terrible disease has brought us closer out of a desperate need to hold on to each other emotionally since hugs are not possible.
I try to make him laugh a few times a day, or at least smile.