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Lkaibel

Very helpful member
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Joined
May 9, 2016
Messages
1,529
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
First, let me say at the moment we are blessed and have little to complain about. Brian wears orthodics and does not walk more than say about a block without rest. Standing is hard on him for sure. He uses a bath chair to do things like wash his hair in the shower because he gets "rubbery" legs and vertigo otherwise. He has weakness in his left hand too, but not yet super disabling weakness. We are about 7 months out from his first "official" symptom and 2.5 months post diagnosis, so I do feel we are blessed.

What has changed in our daily doings is: Brian no longer mows our lawn, it is way much with the hills, etc. I make breakfast/feed animals/do dishes in the morning and at dinner (he is retired, so he did these things previously). A lot of this is because the Rilutek makes him sort of dizzy and sickish for about an hour after he takes it so he is not up to that morning hustle. It is also though the standing, and the bending over to feed animals.

He still insists on doing laundry, vacuuming floors, and other things around the house I wish he would stop because it drains him now, but I also understand it's important to him to do as much as he can as long as he can. I know he can't shovel snow this winter, but he does not know that yet. We will cross that bridge when it flies I guess.

This morning I woke up to do the breakfast drill (feed dogs, make coffee, do dishes, make breakfast, open blinds, turn news on, all trying to do it pretty much as he always did, and he is fussy) and realized we had just two eggs. We eat eggs every morning and Brian always kept track of the eggs. Now I screwed that up. SO, I made his breakfast because he gets feeling REALLY bad if he does not eat pretty much exactly that one hour after the Rilutek. I crave eggs in the morning so after I got him fed I jumped in the car and grabbed a drive through Egg McMuffin. I started crying on the way home in the car.

I miss Brian doing the morning routine. I am sorry I did not see we were running out of eggs. I am sorry my same husband who built our triple garage and shed needs to put his orthodics on every morning and needs my help. It's not much, I realize. I think of the PALS and CALS who can only dream of all we still, of mornings like ours.

Yet I also know that in the end we all come to the same end, albeit through varying paths. When I see how disgusted and sad Brian is made by even the slightest loss of his abilities to do things, I fully see how he will carry out his wishes for the end of this in his own time. It's sooner than I would chose but I need to respect whatever he chooses.

Now, I need to go clean my 80 year old mother's apartment. She has had a time acknowledging that she needs help. FINALLY, that is happening, and in a few weeks I have a cleaning person starting for her but today it falls on me. Brian is insisting on helping. He needs rest, he has overdone this week but he will come and help and overdue some more no doubt. I also get to see how what was once so easy for him comes now with difficulty, again.

ALS sucks a long while before it gets really disabling, nothing good to be said for this beast. I will snap out of this, but this morning it is just plain hard.
 
I understand completely, miss the things we use to do together including chores.
 
I completely understand... I am in those same shoes. HUGS!

My PALS can't do anything that requires speaking. You don't think about how you can't order food at a drive thru or call in a prescription and so many other things.

Everyday it's just one more thing that he can't do. It's so sad! I can't imagine how he feels about all the losses yet he never complains.
 
ALS does suck!!!! Everything about it is scary & sad.
As a family, we cried everytime there was something else that Bob couldn't do.
Just wanted to say many hugs to you.

Joan
 
Hugs Lenore - it does suck, right from day 1, official or unofficial. In someways I think the slow or in some cases fast changes, are harder to take. It's almost easier when those changes are done. DH hasn't been able to move for years, he's on a vent, but at least now it's the same day in and day out. Not that this is easy, but at least its not gee he could do that yesterday or last week and now he can't. I've cried a lot and still do. Hugs and know you are not alone.

Sue
 
Hugs Lenore, the grieving process goes on and one through the whole thing.

Comparing yourself to another means you can say, well it's not so bad yet. However, EVERY loss is a true loss and worthy of being acknowledged as it is your loss.

I HATE ALS
 
I certainly know where your Brian is coming from. I also wear the AVOs and have no balance even wearing them. I need my walker all the time. I want to do the Household chores I used to but my husband keeps saying "Sit down, I don't want you to fall". I do what I can but it is soooo much less than I used to. ALS is a disease that takes away our independence and we all suffer for that. My heart is with you both...God Bless.
 
I completely understand. Steve and I always cleaned house together on Saturday morning. He did all the shopping and cooking buy what I miss the most was the lunches he would make me everyday. They were always filled with love. He would always cut up my fruit. Sounds petty and selfish but it was our routine. He can only manage to make it to the couch and back and forth to the bathroom before running out of energy.

It's so sad knowing what is yet to come and even worse knowing we can't love them enough to change it. ALS truly sucks for us all. Bags hugs around the room
 
I miss my BJ's wonderful enveloping hugs that made me feel safe, secure and loved. I still feel very loved but miss the warmth of being hugged .
 
Brian started talking again about how far he will go with this. It was not morbid, but he was just very clear on his wishes. The loses big and small for all of us are real and painful indeed. I have heard Althemiers called "the long goodbye" but I think that applies to ALS in a lot of ways as well.

Meanwhile, we do have a hot to enjoy and I am grateful for that. Thanks everyone, hugs all around.
 
Lenore, it's a constant March of loss, adjustment, loss, adjustment.... It sucks.

So far I've been able to stay mostly focused on what we can do. When I step back and realize how much we've lost, it hurts more.

Matt and no longer do physical things. It took him three days to clean two guns before his trip we are on. We set up a table in the garage with everything within reach. Everything had to be handed to him. He did one a day and it wiped him out for the day. One day of rest in between.

He still takes care of the bills and things on the computer, but beyond that, I do as much as I possible can for him because small things suck the energy out of him.

It is not uncommon for PALS to change their minds about what they are willing to live with. They adjust, and then the new, or "current" life is better than the thought of not being here.
 
I know exactly what you mean about the energy suck. I see Brian even now in this pretty highly functional state drained by things he did so easily before. I am trying NOT to see our whole lives through the lens of pre and post diagnosis. Yet it's hard not to. Even watching the Vikings game today I thought about last football season and how we never would have conceived of THIS.

I AM majorly relieved though not to see this progressing quickly. After hearing about people being Dx'd and dying in six months, I really feared that.
 
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