Mother has bulbar als I’m scared of losing her and inheriting the disease

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New member
Nov 22, 2022
Loved one DX
Hello everyone. I want to start off by saying thank all the als warriors and the soldiers who fight to care for people with this devastating disease. I am a 39 year old disabled veteran with ptsd a single mom of an 11 yr old daughter who I raise myself and a mother with bulbar als. My mom Jackie is my best friend she is 55 on a ventilator has a trach and feeding tube. She is nearly paralyzed and can not scratch her own head. Her husband takes full time care of her and is a saint. I go almost daily if not every other day to help.

I am trying to juggle school and keep my job but it’s so much. My mother has a bad back for years and so do I. I’m having twitching in my calves along with a lot of back pain. I do have a herniated disc from a fall in the arm the l5 s1 I believe.

My mom Is the first person that I know of in the family with als. Sometimes I wonder if I should get the genetic testing if it would help my anxiety and fears. However what if deep down inside I’m right there probably is a gene. I’m a mess I’m single don’t have much other family or friends. If I get the disease I won’t have a good man to care for me. Plus who will raise my daughter. I

feel like my moms nerve damage in her back is what triggered the disease to begin and I have nerve damage as well. I need support I’m so afraid all the time . Just the thought of my mom not being here makes me sick. Then I gotta go on and survive without her and then worry about the disease. It’s consuming me . Please help!! Thank you
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Bad backs are epidemic. They are not considered a risk factor for ALS. Of course some PALS have back issues just like the general population. Just like some PALS have high blood pressure or arthritis or a host of other things.

if anyone should have genetic testing it is your mother. It is a blood test or a cheek swab. Her neurologist can order it. However in genetic ALS it is exceedingly rare that a child gets it at the same time as the parent as it tends to occur at a similar age. Fearing ALS is extremely common in family members even those unrelated by blood. It is such a horrible illness and most people don’t have prior experience of it before their person gets ill

if you are worried go see your doctor but I would also talk to your counselor if I were you
Hello Nikki! Thank you for the quick reply.

My mom is living at home and has an agency for her medical needs except when she goes into the hospital. Which is often due to the ventilator mostly, she it more prone to infects and fluid in the lungs. The only medical professional she sees is a nurse practitioner from the homecare agency. Would they be able to order the test? Does the genetic testing have to be ordered by a Neurologist? It’s would be very hard for me to get her to be seen via video by a neurologist. I was able to get her an appt a couple months ago over the phone with a pathologist to inquire about her lungs and the ventilator stats that she’s on. The genetic testing may or may not be helpful.

As far as my back issues this is true many people have herniated discs and are not aware as of this. My concern was more so the twitching in my calves and if it was a symptom possibly from a nerve being compressed by my herniated disc. I think it’s fair to be afraid of the disease my mother is a saint and watching her suffer is the worst pain imaginable.

The other thing that I fear is the disease taking me and living my daughter alone with no other family. I do have a therapist but I was curious if you could possibly point me in the right direction for some support groups. The support groups on the als Org website I tried with my mom a few times. However she started to get more upset participating due to the state that she’s in. She is in the worst condition then I ever ever really witnessed anyone in. I do have ptsd from being in the army and this is by far worse then the trauma that I endured as a soldier. I think als family support groups and grief groups would be beneficial.

I appreciate your help and advice. Thank you
Synapticure might be able to offer some assistance. They only deal with ALS and Parkinson's and do televisits.
There are also quite a few FB groups. Some are for women only, some for caregivers, some for people with ALS.
There is a group dedicated to bulbar onset.

There are also grief groups on Facebook.

I'm so sorry what you and your Mom are going through.
The np should be able to order a genetic test. Invitae will test free. There is a big panel but usually c9orf72 needs a separate order Sponsored genetic testing | ALS Identified™ Program | Invitae

for support as a family member I would have though alsa has groups for family members. The Philly chapter has been one of the good alsa chapters
CCALS dot org also has groups online

neither are really appropriate for your fear for yourself though which is why I suggested your therapist. There are health anxiety groups online too but a one on one counselor would seem best for talking it out.
Hi Kim thank you so much for your advice and helpful information. I have been reading many of your post on this forum and truly appreciate your strength wisdom and spirit. You truly are amazing! May god bless you love, you are in my prayers ❤️
Just a note. My PALS - my bride of 55 years, - father had Alzhiemers (SP?), then developed Parkinsons. of the 7 children, the ONLY one to come down with something similar is my wife. The children are both older and younger. My wife's mother had a Constitution like iron. She, at age 80+, with a broken leg in a cast was out working with a shovel and rake in the garden.

To leave you all on a pleasant note, Happy Mother's Day (I know, I am late - the story of my life!)
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