Changes

[Lkaibel]

Brian was diagnosed in June of 2016, and we have been so blessed that he has had little progression.

Today though I was reminded that progression is real. I bought him a cane this summer for when the need arose. He mentioned that he would use it outdoors this winter (it will likely snow here within the next 4 weeks). I also think he looks a little wobbly at times lately. I told him he should use it indoors whenever needed and he agreed.

I am glad he tells me this stuff. I am SO grateful we are not in the situation with progression some here have been. I saw a post here from a PALS with a husband diagnosed in June also and he is "bedridden" now. I know another was diagnosed this Spring and has passed on.

I think I just saw that moment happen though where we really, really have to negotiate with this beast. Some lose quickly and dramatically from this thing, we are losing stuff slowly and quietly.

I am happy we got a super nice ride in today in the beautiful fall weather. He thanked me for it, which was unusual. He hugs me longer and tighter now. We are lucky for the huge love we share.

 

[Jhill]

My Bob had very rapid progression. I feel that we grieved almost every day throughout his illness because the losses ocurred so quickly.
Fast or slow, this beast of a disease is heartwrenching.
Enjoy every day that you possibly can.

Many hugs to you
Joan

 

[affected]

Lenore I'm so glad that he is willing to consider safety seriously, it makes a huge difference both for helping keep his progression slower, and for your sanity!

Long hugs, that's delightful, savour every day of it like you are and thanks for posting the positive in with the noticing of change.

 

[affected]

Joan was posting when I was

It was the same here Joan, every day there were losses, it was so fast I was just running to try and keep up, let alone ahead! Never enough time to really savour what we had, just watching another thing going.

 

[Lkaibel]

I feel so much for those of you who never got the time we are having. We have been doing so many nice things. It's awful that ALS can just be a train wreck, diagnosed and gone in less than one year. Of course, I am not sure how I would handle the many years, fully disabled experience either. Indeed a beast no matter what the course.

 

[vltsra]

Lenore, thinking of you, we are on a similar track. My husband has a slow progressing variant, and has continuing weakness in his left arm. So far he hasn't needed help walking but I'm sure that it on the horizon. I'm glad your PALS decided to use the cane. It's hard to watch him lose abilities slowly, but I have told him we need to be thankful for every day, and thankful for each other.

 

[Lkaibel]

Not using it yet but we know it's coming for winter.

 

[scaredwifetx]

Steve looses a little more ability weekly...it seems. It is in the hands, legs, trunk and breathing. We had clinic on Friday. His strength numbers were down as well as his breathing numbers. However, everyone told him how well he is actually doing. They believe it is because we have been proactive with the bi-pap and overdoing of his strength . They were very impressed with his positivity and with the care he gets from his brother and myself.

I was still upset with his results and acted like a baby for a couple of days. I was reminded by his brother that Steve is doing well considering it has been over a year since diagnosis. Reading the struggles here has shown me that we are very fortunate. There were couples at clinic that broke my heart.

We were told by the doctor that Steve's breathing will end before the need for peg nutrition so he did not recommend a peg. We came home and talked about it and have decided that we don't agree. We are now making arrangements for the peg.

I truly feel so bad for everyone who is struggling so bad right now. I hope and pray for you all. We need a progression time out.

 

[soonerwife]

Ugh! I really hate ALS! I found out today that Cliff is having a hard time holding his head up. UGH!

 

[scaredwifetx]

Sooner, congrats on beating the Longhorns. At clinic they prescribed a neck brace for Steve. It is supposed to be very comfortable and not hugely invasive.

If you need me to text you with the info let me know. I am totally on the haters club with you.

 

[Lkaibel]

Some days I feel like I am waiting to be hit by a train. Other days are better. I mourn the loss of our limitless future, or the illusion of it actually. I do need to get out of a mental rut again I think.

 

[scaredwifetx]

Lenore, its like you took the words right out of my mouth. Tried as hard as I can to remain cheerful and positive but sometimes I want to find a spot where no one is and scream as hard and long as I can. I think a lot of us are stuck in the rut right now.

 

[Lkaibel]

That's why I come here Scared. No matter how caring others can be, this is where I can talk to people who truly understand.

 

[Maryl08]

I'm not sure how the normal progression goes but my mom is almost bed bound now in a year. She got to enjoy mobility for the first 8 months and then progressed quickly in the last few months. Although she lost she ability to speak within the first few months because she is bulbar onset.

I agree this forum has been a huge resource and comfort. #effyouals

 

[affected]

The more we talk here the more we learn that there is no 'normal' progression. Every PALS is different, even when there are lots of similarities.

I would never have made it through without my family here. This is where people 'get' what we need to talk through!