A few questions

[missmineau]

As mentioned before my mom was diagnosed in October of 2010, so this is all still very new and very scary to us. We went to see her this weekend and she is having trouble feeding herself (lifting her arms) When she was diagnosed in October this wasnt an issue at the time. I was wondering if this would be considered a fast progression? Any suggestions on how to make feeding herself easier? It seems to be her upper arms that are mainly affected so she kinda leans to the side and forward to eat, by no means does it look comfortable at all. She has mentioned even simple tasks such as eatting exhaust her. With nothing to compare it too I am not sure what to think. She says her chewing and swallowing are fine but when tired her speech does slurr. I know everyone does progress differently, its just always a shock when we do see her and there is a change. I am tired of people telling me this will get easier, and that everything will be all right because it sure doesn't feel like it at the moment!

 

[Katie C]

I actually DO have a suggestion. This worked for Glen for a very long time...the idea basically came from his occupational therapist then we played with it so it worked for him. Since he ate most of his meals in his recliner, we got a hospital table that was designed to be used with a recliner chair. We adjusted the height as high as Glen was comfortable with. He could then rest his arm against the table to pick up a mouthful of food and lean forward to take the bite. This saved exertion on his arms. Also, be sure your mom has flatware with built up handles so they are easier to hold and again need less exertion. Hope this helps.

 

[David_W]

I'm so sorry that you and your mother are facing this dreadful disease. I hope you find this on-line community of folks as helpful, compassionate and supportive as I have.

Ditto Catie C's suggestion. In my powerchair, I've also found it easier to eat at a "pub" height table for the same reasons; I can rest my elbows on the table and have less distance from plate-to-pie-hole ! Bad manners to be sure, but anything that makes it easier will help reduce the fatigue your mom's feeling.

Like many others with ALS, I've learned that conserving energy and reducing physical strain and discomfort - even in small ways - can make a big difference in a PALS’ overall quality of life. The wisdom in doing so becomes more and more evident as the disease progresses.

Please know that you're not alone in feeling scared, shocked, worried and a whole range of other emotions. ALS is a scary disease and after the initial shock of diagnosis - and perhaps denial - gives way, it's natural for most PALS, CALS and others to experience strong and even conflicting emotions. I’d worry more if you weren’t feeling scared.

Finally - as you may be learning first-hand - ALS is not as well-known or understood as say, a diagnosis of cancer. Perhaps this partly explains comments like, "this will get easier," and "everything will be all right." In my own experience, I've come to see a deep truth in these statements, but it has taken time and an unshakable faith to find that personal truth. Right now, it’s easier to assume such comments were spoken by well-meaning, uninformed souls who don’t have a clue what your mom is facing. Perhaps – in good time – you could enlist their help in caring for your mom and gently educate them about ALS. Or you could just look at them like they’re crazy and snort derisively. That last one feels really good, sometimes!:lol:

Wishing you strength and a measure of peace.
David

 

[Pat Paine]

Dear Missmineau,
I too get fatigued eating,both from arm issues and breathing problems too.
Is your mom short of breath,if so, her ALS doc or a pulmonologist could assess the
need for BiPap support. I am praying for you and your mom. It is so hard for others
to express concern wiithout sounding insincere sometimes,but I do think they mean well.
Blessings, Pat

 

[missmineau]

Thank you all for your thoughts, suggestions, and prayers. I know people mean well, and like stated before so many are unsure what to say. I have gathered a lot of strength from those around me and from this forum, but like also said sometimes I just wanna snort and roll my eyes at them. Like my mom said the other day when I was lying in bed with her.....It seems like a bad dream, we just aren't able to wake up and escape from it.......

 

[David_W]

In my own way, I understand. I've been living with ALS for over three years and have reached a place of peace and acceptance - most of the time. Yet, just a couple days ago, I wanted so DESPERATELY to get-up out of my powerchair and just stretch my legs ... something I haven't been able to do for more than nine months. Completely irrational, physically impossible, yet all I wanted was to just NOT have ALS ... to wake-up from a bad dream, whole and healthy.