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Lkaibel

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I just wanted to say that I am grateful. At the eight month mark on February 28th, Brian's "only" impairments are weakening in his left hand and left foot/leg. He walks, talks, eats, drives. He goes to swimming and adaptive yoga. His blood 02 is 98% and his capacity is normal. He still climbs stairs, though he walks with a cane and leg braces, and says there has been some weakening on his right side too (just very marginal compared to the left).

I DO check in all the time on the driving. I am NOT saying we have not had loses. The man who made me breakfast every morning, did my wash (he is retired) and ran around like a squirrel all day on projects is no more. The energy, strength, and coordination is not there for all of that. He still does things around the house but they are ever so slowly less all the time.

I am 100% aware this can all change on a dime, but even if it did we would be very lucky next to so many people who are facing the beast. What grabbed me was a thread I was on here recently. So many people who were diagnosed in early to mid 2016, like us were facing faster progression, more issues, more loses.

I hurt a lot sometimes, I won't lie. I probably spend too much time dreading the future and not enough appreciating the present. I get caught up, still in those 15 or so years we have in all reasonable probability lost. I look at the boundless optimism of people like the author of "Until I Say Goodbye" and no, that is not me...

I just wanted to say I feel for everyone who is facing a faster progression, and I want to be careful not to burden those who are with a bunch of complaining without at least acknowledging that in ALS world, if not the "regular" world, we are very lucky so far with this, and we know it.
 

Firefighter58

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578
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Hi Lenore
I agree so much with you. I can not talk and walk slow with the aid of a cane ( I do have a walker and a manual wheelchair) but the rest of my body is still fine. I will start a wiring job in my crawl space next week that I can still do no problem on my knees, it just takes a little longer. but like you say, I never complain, it would do no good, we just go on living life as best we can.

Al
 

KateEmerson

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Happy for you and Brian and thank you for reminding me to be grateful. Kate
 

Nuts

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Lenore, I'm very glad that Brian is progressing so slowly. I understand your pain--the first year for me was the toughest. To be honest, I wasn't able to stop fretting about every little stumble until Matt lost a LOT more functionality. I was terrified of injuries that would speed up his progression. He made his choices, we are where we are, and now I've all but forgotten about the lost future. I can't go there.

So if you "waste" a bit of the time you have left in mourning your future losses, I understand. Just try to balance things and enjoy as much of today as you are able.

It took me 9 months to stop crying every day. At the one year point I didn't cry every day, but could no longer stop the tears when they chose to come. I asked for antidepressants at that point, and now I have more control over tears but NONE over my weight. So, I guess we could say that I'm fat, dumb, and happy!!!

Becky
 

pdcraig

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09/2012
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ontario
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oshawa
Hi Lenore, I'm glad Brian's progression is slow. My own PALS is the same, we're at 4 1/2 years now. You are doing far better than I was at eight months feeling grateful. All I can remember of that time was confusion, frustration and a fair bit of anger. There was so much going on, so much to try and take in and my PALS shut down at first. Depression, fear and anxiety completely overwhelmed him. I don't think he got out of bed for the first three months. I had no idea what was happening or how to try and make things better.
Try not to quantify or to judge how things should be at any given time. The loss you feel is no less valid because his progression is slower. We are all different, how we cope, what we're coping with. Not better, not worse, just different. Same with the future. It was never a guarantee. Nothing seems to smash that illusion we have of control over our lives and futures quite like ALS does. I can honestly say this was not what I thought our lives would be like, but it's not over, or ruined, just different. I can handle different. You can handle different. I'm fairly certain even Susan Spencer-Wendel had her bad days.
Never underestimate the value of a good cry. I had no idea I had so many tears in me. And still do even after all this time. I don't worry too much, I feel I've earned the right to a few tears here and there. Then I get on with things, just like you're doing.
Sharing how you feel is never a burden to the rest of us. It always amazes me how people here are so quick to lift each other up when things are down. What a relief it is to realize I'm not the only one who feels this way. It's why we're here. Why we aren't alone on this journey. We're all stronger together.

Paul

Prince of Persistence

=o0:neutral:0o=
 

Lkaibel

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Wow, thank you Al, Paul and Becky. Your words remind me so much how you really have to be a PALS or a CALS to see all the parts of this. I think it really helps me that Brian can look at his life and say "I've had a good run". He is of course upset about all the things he planned to do in retirement that will never be now. I think though that being able to say your life has been a good one is huge. Even if you are Dx'd with a terminal illness 1.5 years into retirement.

I say sometimes like a broken record, I am 15 years younger than Brian and I always knew unless something happened to me I would be a widow. Just not now and not like this.





like this.
 

vltsra

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11/2015
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Lenore, I really relate to everything you have said. We are a year and a half since diagnosis. My PALS progression is slow as well, but it is still heartbreaking. He showed me his arm yesterday and it is very atrophied. He tells me he is very frightened, as am I; I don't know how to comfort him and don't know how I will cope as things get worse. I am so grateful, though, that his progression is slow and that he is still functional - he is still going to work, and we went for a short walk yesterday. He says he is much more tired these days, I don't know if it is the ALS or depression.

I don't think my PALS is at the point where he can say he's had a good run. You are lucky that Brian can do that. My PALS is very committed to his business, to the level that he puts it above anything else. I've been trying to talk him into doing a few things with me to have some lovely life experiences but he keeps saying no.

I've been taking him to mass on Saturdays - he is Catholic and I am not, but I wanted to do this for him. The subject of the sermon was trying to find joy in every day and living in the moment, trying not to worry about tomorrow too much. While I know we need to be thinking about the future in order to prepare for it, the subject was so appropriate to all of us. Paul what you said hits home...about smashing the illusion that we have control over our lives and future.

And thanks Al for your courage to go on living as well as you can. As sad as I feel I cannot imagine how PALS feel watching their bodies fail. It is heartbreaking. I'm trying very hard to bring him as much joy as I can.

V
 

Jhill

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Joined
Mar 13, 2016
Messages
170
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CALS
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03/2016
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PA
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Oreland
I am so glad that Brian is progressing slowly, giving you more time to do things together.

Fast or slow, this disease just breaks your heart!

Many hugs to you,
Joan
 
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