74yr female with slurred speech and swallowing issues starting around nov 2023

[marshar]

Hi, I'm new
My sister a 74yr female with advanced scoliosis and has been schizophrenic since of the age of 25.
She is now diagnosed with Bulbar als. Started around oct 2023 with a harsh voice and now she
has very slurred speech and can't swallow water unless it has been thickened.
Her neurologist did all the tests for myasthenia gravis which came back negative so is saying she probably has
bulbar and has given her pyridostigmine.
She has an appt with a neuromuscular dr next week to confirm the bulbar.
She has been on risperidone for 49yrs. She currently lives on her own.
She does have a helper come in once a week for bathing and misc because of
her scoliosis, she has a hard time doing physical things. She can walk, but
her back is so curved over she needs a walker to keep from falling. The neurologist said she
has good leg/arm strength. Do people with bulbar always progress with limb weakness also?
Does anyone know if there are drugs that might be causing the speech/swallowing issues?
How does the neuromuscular dr. test for bulbar?
Thanks for any info.

 

[KimT]

Yes, bulbar eventually progresses as do all onsets of ALS. It just depends on her bulbar progression rate, her lung capacity, and willingness to use ventilation and feeding tubes. I had a close friend with bulbar who elected not to get a feeding tube. She progressed quickly and passed. She was still walking slowly and had use of her hands when she passed.

She will probably get a follow-up EMG in an area around her neck. I had one done and they can test the SCM muscle in the neck. Some have had tongues tested.

I'm so sorry your sister has another issue besides scoliosis and a brain disorder. I have moderate scoliosis and it can get very painful, especially in combination with weakening muscles.

Preventing falls, of course, is most important. You will know more after she has a concrete diagnosis.

 

[marshar]

She had her EMG today , legs and arms tested ok but tongue is weak, so the dr is say ALS. She tried the drug Riluzole 50mg 2/day but it made her neck and left side of face stiff so she stopped.
How do I get medicare to approve a motorized wheel chair for her, which I assume she will need in the near future.
Thanks for any info

 

[Nikki J]

Her neurologist needs to do the order. Is she at a clinic ? The pt and the neuro would work together. Clinic know how to write things so they meet needs and get approved. It does take time as they are customized if you end up needing an interim chair the mda or local alsa may have a loan closet or buy one secondhand. Do not use the wheelchair benefit on anything but her custom power chair. The usual rule is 1 mobility device every five years covered by medicare

I am very sorry it turned out as you expected

 

[marshar]

She has appt with Frodtert ALS clinic in milwaukee,wi on the aug 22, I will see if they can get a electric wheelchair approved, what other devices should I ask for, that she may need . Is it hard to get into a nursing home with als. She lives on her own now, but once she can't walk or use her arms she will need a place to go. She also has copd and one lung is compressed because of her curved spine, so she already has breathing issues because of that. She saids it is hard to push her poop out, the muscles in that area do not work, is that an als issue?

Thanks so much for the kind word and useful information.

 

[Nikki J]

Does she want a feeding tube? Breathing support? She probably needs these first though they usually don’t have the lead time of a pwc. Also a communication device. And ask about neudexta a drug for emotional lability but also may transiently help bulbar.

Some nursing home take als patients certainly. The more equipment the harder it might be. Vents are hard to place but you are not talking about that.

Weak abdominals ,decreased mobility and diet/ fluid changes make constipation a common problem in ALS yes

 

[marshar]

how do i delete a post I wrote?

 

[lgelb]

I will PM you about that.