Mother Diagnosed

[Jesse35]

Hi everyone, My mother has been diagnosed with ALS 2 weeks ago. she is having a bulbar onset right now having a hard time swallowing, talking and eating. Her Neurologist told me her breathing is good and has a relatively slow progression. She is on Riluzole right now, seems like the progression has stopped. The other problem we have is that she is taking care of my brother who has a mental desease (minor case of schizophrenia). They are both 1h30 away from where I live and work. I'm freaking out right now, not sure where to start. Ive been reading this forum a week before she was diagnosed, I had a feeling she had the desease, since I have good knowledge of it, my stepmother lost 4 members of her family to this desease including her mother. thanks for the support

 

[lgelb]

I'm sorry to hear about your mom and your stepmother's family history, Jesse.

It is certainly too much to expect your mom to care for your brother as her ALS progresses. Is there any other family or friends to help?

Let us know how we can support you.

Best,
Laurie

 

[Clearwater AL]

Jessie maybe you can clarify, as you wrote...

"My stepmother lost 4 members of her family to this desease including her mother."

How does that link to your mother?

And, as you wrote...

"My mother has been diagnosed with ALS 2 weeks ago. she is having a bulbar onset right now having a hard time swallowing, talking and eating."

And...

"Her Neurologist told me her breathing is good and has a relatively slow progression."

Breathing really isn't related to Bulbar ALS.

Maybe you might share a little bit of her journey to diagnosis that within a two
week diagnosis he/she (the Neuro) was able to determine her progression is slow.
Also... what test determined a confirmed diagnosis of ALS? What ALS clinic
might she participate with?

 

[KimT]

Hi Jesse. So sorry about your mom.

I really hope you have someone who can care for your brother and others who will help with your mom. I can only imagine how hard it is for you not being real close.

Tell us how we can help.

You need to make sure your mom's financial affairs are in order and that she has a POA who is trustworthy and she feels comfortable sharing her info with. As you know, there are financial aspects of this disease that need to be worked out. The most important thing is that your mom gets good care throughout and that is something you can help her work on.

 

[Jesse35]

Thanks again for the support She was diagnosed by a neurologist at the Trois Riviere Hospital here in the province of Quebec. I finally got a hold of him 2 days ago on the phone and asked him if he was absolutely sure about the diagnosis, he told me during the 5 days my mom was at the hospital he ran all the tests, including blood tests, EMG , breathing test etc. He added that he eliminated all the mimics and came to this conclusion.

I believe my mom started having symptoms of the disease about a year ago, I noticed her coordination with her hands was a little off. She somehow impaled her hand with a branch she was trying to cut and consequently had an infection in her palm because of it.

In April of this year she slipped on black ice and broke her ankle pretty bad, she had to get operated so they can install metal parts in her ankle. During the time she was healing I noticed she had a hard time opening her cans and bottles, so I did it for her. I never thought at this point that she had als.

From June to the present time she lost a total of 15 pounds. I brought her to the hospital beginning of august when I noticed she slurred her speech as if she was drunk.

As of now, she is able to walk, cook and do stuff around the house, but she has a hard time eating and talking. I talked to the neurologist about this and he told me that her progression is relatively slow. What supplements can i give her to help out with the bulbar symptoms? right now she is taking vitamin b, ginseng and zinc capsules. thanks so much for the help

 

[lgelb]

Jesse,

We would still recommend a second opinion, as we do for everyone, no matter how sure the neuro she is seeing seems to be.

Before considering supplements, you may also want to talk with her about a feeding tube, since she is having trouble eating and nutrition is a big deal in ALS. She has already lost 15 lb and if she was normal weight, that weakens her reserves in doing daily activities, since ALS affects metabolism and energy. There is a lead time in getting a tube placed (by a radiologist is what is generally recommended) so it's a conversation to have with her and then with the clinic.

She doesn't have to have a tube if she doesn't want to, of course, but that will likely shorten her life.

Since she is having problems speaking, you may also want to consider a text-to-speech app for whatever tablet, phone, computer she uses. You can find some ideas here from past threads, or let us know if you need suggestions. The clinic may have thoughts as well.

Best,
Laurie

 

[Kristina1]

Clearwater, I think Jesse's post made perfect sense. He/she was just saying they were familiar with ALS due to stepmother's family history of the disease, not that there is a connection between stepmother and his/her mom. It is a sad coincidence. As to the rest, he/she was just describing the neurologist's comments. I don't understand why some new members are treated with what seems like suspicion. They are here for support, let's be supportive.

Jesse, I agree about looking into a feeding tube and tools to help with speech. I also have bulbar onset. I have a feeding tube which has been really helpful for me. Some speech related tools can be great also. Besides a text to speech app, a voice amplifier might be useful. It would allow her to speak quietly without straining to project and straining those vocal muscles through the day. There are also some tools for opening jars and such that would prolong her independence. A SLP and OT consult would help get her set up with many of these things.

 

[KarenNWendyn]

Jesse, I’m sorry to hear about your mother. You’ll find great information on this site. Best of luck.