Hold on Tight...

Lots of hard stuff, Lenore. I'm sure it is gut wrenching to help him with some of the decisions that he has made. But you are supporting his wishes, and that is the most important part.

My DH has stated numerous times that he "can't go on this way". He has said no feeding tube, no vent, and he wants a DNR, but has not taken any steps to hasten the inevitable.

Sending lots of love and support. Hugs

It's easier to never make use of something than to willingly give it back at some point. It's a painful way but not the hardest way to decide.

It’s been over two years now since the big diagnosis. The day we learned that it was the thing everybody be told us it just could not be.

Regardless of if I live another day or another 53 years, I am sure I’ll never believe we experienced this. I talked to a woman a few months ago who had been through so much. She lost her first husband at 40 to a Brian tumor. They had 5 kids and three still in high school, one in grade school.

5 years later she married a wonderful man and they had 15 years, then ALS. Her PALS case was rapid, gone in just 9 months. She said somehow as an old woman now in her 70’s, it was his passing that shocked her the most. She said she believed it was because we all know we may hear the words “ it’s cancer” one day but no one thinks they will ever hear “it’s ALS” unless they are FALS.

Funny thing is for me, I swear now that somehow I “smelled” it. Years back I read books by people who had ALS. I use to be vaguely haunted by the idea that terrible occurances were not done with me yet. I assumed that meant I would get some Godforsaken disease, not him...

Odd how life works. Maybe just anxiety or coincidence, who knows. Planning a good workday after a good breakfast tomorrow. Life knows only how to go on.

I still find at times I get a sudden jolt of shock that it happened Lenore. You would think I'd know it by now, but somehow it is the unthinkable and my brain tries to find a way to believe anything other than that it happened to us.

A good breakfast is a wise beginning xxx (after that who knows!)

I can empathize Lenore. I worried about the "odds" all the time. I thought the chances of Dave coming down with Parkinson's, having a CVA, heart attack, or even dementia were all a possibility. But never ALS. Part of the reason is I knew very well of what ALS could do. So, I never wanted to think about it.

Lenore, your comment "Regardless of if I live another day or another 53 years, I am sure I will never believe we experienced this" really resonates with me. I'm glad to know I'm not alone in my thinking. Rationally I know what happened. I know Dave is dead. I think I may always remember the terror & the heartbreak of witnessing each new loss and accommodating to it somehow. And yet, my mind is oddly functional and at the same time numb. On the one hand, I am certainly coping and going on with life. On the other hand, I still find that I will stop and literally shake my head in disbelief of what happened to us. I know that Dave's loss is still very recent, but I think a part of me may forever be in a state of denial......

(Also, like you Lenore, for whatever reason, I had this terrible feeling of foreboding for years ...... free floating anxiety, like waiting for the other shoe to drop. I always thought that meant I was going to die young. I rarely have that feeling any longer. I feel like I have lived thru one of the worst things that could happen to anyone, and now almost nothing scares me).

Lenore I too was worried prior to ALS. Mine was a bit different in a way. Brian was a work-a-holic. Never stopping. Due to this he got quite miserable to be around, he became pompous and most would label him a jerk. It changed him. I often wonder if that was the true beginning of this nightmare ALS. What scared me started when our son was just 4 (now 31).

We were planning a trip to CO to visit my brother, I wanted to drive. At the time we didn’t own the business, but he ran it for an absentee owner. He absolutely refused because “he couldn’t be away from the office that long”. I told him then “if you died tomorrow, the company would go on.” He looked me in the eyes and said “ I’m not dying tomorrow”. I went to bed scared out of my mind, thinking God will not be mocked.

So life went on and about 7 years later we bought the business. That’s when the above with working like crazy started kicking in moreso than before. I always worried what 2x4 was going to hit him upside the head to wake him up from this horrible attitude/personality he had taken on. The work hours/attitude just kept getting worse as time went by, until finally it all crashed with the ALS.

That was his 2x4. At times, it seems even that 2x4 wasn’t enough. As he still doesn’t understand how he treats people at times. Is it partly FTD? I have no way of knowing. I’ve read Tillie’s website several times. Sometimes I think yes, other times no. In the long run it doesn’t matter. He has ALS, we are living the nightmare and I’ll probably be just as shocked and stunned at what we went through as everyone else.

Hugs

I feel like I lived through one of the worst things that could happen to anyone, nothing scares me.

Yes, so relating to that. My mom said tonight she’d rather die than have to be fed like the people on another floor of the Care center. I said well, I feed Brian and now it’s through a straw. I’m feeding the man who built our triple garage through a straw. Yes, I am no longer anxious about much of anything.

I feel for you Sue, those are tough memories from before ALS. A reminder too. Make sure your work is your love if you spend all your time at it because none of us has all the time in the world.

Brian worked at something or another all the time, but loved it so for that I am glad for him.

Ironically though, he was always very smug about his super strict diet and exercise and being extremely fit. He refused to call his food food, it was”nutritional components” and “taste was irrelevant”. Brian was also fond of chatting about “known carcinogens” in food.

As to my habits, he frequently chatted as if I’d keel over any second. I cared not, it was background noise. Well, here I am waddling around with only a few blood pressure meds and some Carpal tunnel. I need to dump some serious weight when this is over, but fitness sure did not buy him long life.

The only reason I want to lose weight is to feel better and lighter right now. My fat mom is 82. She landed in a nursing home this year but was in good condition prior. Brian won’t see 70.

Yes the man who built our three car garage could also walk on it’s pitched roof. He went up there one night three years ago to watch fireworks. I told him he was being goofy again while young neighbors watched in some awe and said “like a cat!”. He was 64. Now, he can’t walk.

I could get bitter thinking about that. When I feel bitter edging in though I remember what he said when he was diagnosed. He said “Don’t cry for me Argentina, I had a good run”. Having a good run is the most important goal anyone can have.

Lenore, I knew Chris was the man for me when, in our early days of dating he said "the only things of value you have on your deathbed are your memories of happiness".

You and Brian have so many of them, he reminds me of Chris - taking on big projects, walking about on a roof, doing it all himself. I had to have some roof work done late last year and remember watching the plumber up there and remembering how Chris would move across a roof like it was flat ground.

He would often say to me that I should see a doctor about this or that and I still haven't, and I'm sure my little aches and pains and stupid issues will be with me for a long time.

I only wish he had been able to hold his memories of happiness on his deathbed, but FTD robbed him of that too.

Funny, my DH was one of those fit guys too. His work-out would often come before a lot of things I would have preferred to do. Always took a boatload of supplements. Was on top of the latest nutritional news.

Me, not so much. Weight has always been an issue with me. The only time I ever regularly took any vitamins was when I was pregnant. Once we had our kids, my life was about them. He still had his work-outs, but my exercise was running around after the kids. He also bugged me to go see doctors for what I considered nuisance aches and pains. Never did.

Now, he still takes lot of supplements - which I have to buy, portion out and feed him. Actual prescriptions, he is picky about. I think he could use an anti-depressent, but he insists he doesn't need one. He is also adamant that the statin he was on at one time contributed to him getting ALS.

I joined a gym a few weeks ago. I can only go when his aide is here, so 2x a week, that is, if errands and all the 1001 other things are done. I just want to feel better, maybe lose some weight. I've always believed that everything in moderation is the best way. I told my kids to get used to me, I plan on being around til I'm 104. Then I'm done.

My DH, too. Lifted weights, runner, watched what he ate. Regular checkups at Doctor who put him on blood pressure medicine. My DH thinks the med contributed to the ALS.

Ironically, he is off of it now and his blood pressure has never been better. Probably didn't need it at all.

In contrast, my Brian was mister DIY himself. We totally gutted and redid our first home. So projects where always huge. As far as fitness though, nope he wasn’t interested. He was only a bit over weight before this all started. Claimed he walked around his shop (our business) enough all day, didn’t need to workout. I was the one always bugging him. I wasn’t perfect, but did a lot more exercise than he ever did.

He didn’t eat right either. Glass of OJ and out the door. Might eat lunch around 2, down a can of soda and had a couple of beers when he got home. One with dinner - his best meal since I cooked - and one after.

So I’m not sure diet/exercise has much to do with it. And he was never on any meds or supplements.

A connection between great amounts of physical activity- be it exercise or DIY home projects ( my Brian was in to both) or sports has been speculated on for a long while.

I spoke with at least one ALS specialist who said it does not get deeper research because saying ALS and activity/ exercise may be linked goes against the idea that any and all activity/ exercise is healthy.

It may just be that my Brian dried up his motor neurons but who knows.

My Chris didn't do 'exercise' or go to a gym or anything, he was just on the go all the time.

He believed in home cooked food being the root of all health and happiness and ran cafe's for much of his life.

He used to say he could talk under water with a mouthful of rocks. I would watch him in awe as he cooked several meals at once while holding conversations and the laughter, oh the laughter.

So bulbar onset with FTD robbed him of all of that first - couldn't talk and laugh, (his first aspiration episode happened because he made a silly joke and as we laughed he aspirated), couldn't swallow, then hands went and he couldn't cook, and with FTD his whole personality went including caring at all about food.

Totally crap disease, totally. I don't know how they can forge the link to being very active. Remember this is still a rare disease, and so the majority of very active people and sports players do not develop ALS.

Speaking to how they will eventually make solid links. There is a really interesting paper recently out thatlooked at FALS and SALS. As you know the theoryis that those with SALS have a slight genetic weakness that only manifests when exposed to a series of triggers
They think there are a series of 6 steps that have to happen.

People with FALS because of their mutations skip most of those steps and only need a couple-4 depending on mutation. This is why there is incomplete penetrance. Occasionally someone avoids any of the triggers.

They think by studying FALS carriers ( which is being done) they may be able to identify one or more triggers as people are followed in real time and looking for one or 2 factors in much easier. They may be able to compare sibling pairs as well ( my theory) if they vary in onset

Nikki can we have a link to the paper or at least, what 6 steps did they come up with?