THE ALS COMMUNITY

ALS is a RARE disease. Doctors are no even sure what causes it. It's a unknown like many other neuro diseases. There is so much we don't understand about the brain. ALS is like AIDS 40 years ago. They say it's an underfunded disease, not incurable. But what about all of the other neuro diseases out there?? Alzheimer, Huntington's disease, Parkinsons..

The point is not a lot of people are familiar with ALS. Not even a lot of medical professionals or assisted living homes know a lot about it. In fact, many assisted living facilities are not equipped to care for ALS patients because of how extensive their needs are.

I certainly had no idea what the f**k to do at first. In fact, I'm still learning as we go. I've always been pretty independent and resourceful. But even I need help sometimes and I've learn that asking for help is totally necessary with this disease.

I found the ALS forum early on, before my mom had even received a definitive diagnosis. You learn that the ALS community is very involved. Even after their PALS (person with ALS) has passed people remain involved - offering advice to newcomers. And I am SO grateful to have them.

There are no judgements made on the site. Even if you have to rant and be a complete b*itch for 2 minutes, they let you. People respond. Better yet, people understand.

MODIFICATIONS THAT HAVE MADE LIFE EASIER

With bulbar onset ALS my mom's symptoms have progressed faster than many ALS patients. One weekend she's up and about and the next we're dealing with accidents and difficulty getting out of bed and off the toilet seat. That is the reality of ALS. It is an ugly disease.

We are constantly adapting to new changes. Here are some fairly affordable adjustments that we made to make life easier:

Indoor Walker: We got this way before my mom needed it. In fact, she refused to use it at first. One thing I've learned from all of this is she is a stubborn lady! This was covered by insurance and my mom uses it all the time. One time she didn't use it and we found her lying on the floor in the kitchen when we got home.. That was traumatic enough for all of us. Now she uses it every day.

We also got a little basket that attached to it so she can carrying a few things around like a glass of water or extra tissues. 

Raised toilet seat: The higher the seat, the better. This applies to seats in general if your PALS is experiencing weakness in their legs. The elevation gives a bit of momentum to help my mom stand up. Also the added handles on each side help a lot too. 

Depends: So I'm not sure how well these will work yet as my mom hasn't had another accident since she's started wearing them. She had 3 three before we lost our shit and decided we MUST do something. Luckily with more frequent visits to the bathroom, she hasn't had another accident yet. A little tip someone gave my on the ALS forum is to wear two depends at once - cut a small hole in the first one so the moisture can pass through to the second. 

This week we are looking into hospital beds, hospices and in-home caregivers. Stayed tuned for more to come.

TIRED

It's been almost 9 months of living with ALS now and I think I can speak for everyone when I say we are tired. Both mentally and physically. People always ask me how my mom is doing.. and it's hard to come up with an answer. There's no chance of her improving.. and every day is a challenge. Some days more so than others. But none of it is easy.

Instead I just say "good" because that's what people want to hear? Few people ACTUALLY want to know what's going on. People don't like to talk about the hard stuff. And quite frankly I probably don't want to tell them about it either.

I spend all day thinking about ALS.. things I need to get done.. people I need to call.. equipment I need to order. It's exhausting.

Recently my mom has stopped being able to get out of bed on her own. So bathroom breaks are harder. We have to be more aware if she needs something. And a very unpleasant thing has been happening lately.. accidents. With my mom's legs getting weaker, it takes her longer to get to the bathroom. And I'm not sure if she is also dealing with incontinence. Last week alone she had 3 accidents while getting from her bed to the bathroom across the hall.

That's when we had to switch it up and get her depends. For those of you lucky enough to not know what those are - they are adult diapers. We are hoping to hold off getting a catheter for a while longer.

I can't remember what percentage of caretakers are said to go through depression but it was insanely high. It's not an easy thing to go through. It's hard to be a part of normal society when your whole world revolves around this disease. And of course I wouldn't have it any other way. I love my mom. She's my best friend. And she is handling everything with such patience and grace.

But if one day I had face this beastly disease myself, I would not chose to.