My Mom has Bulbar ALS

[TGB1]

Hi,

I didn't think I would ever be here, but here I am. My mom was diagnosed with bulbar onset this past Dec. 2012. She just turned 86 last month. She started slurring her words over 2 years ago, and she was still eating everything but cutting stuff into small pieces. We went thru almost 2 years of doctor visits, x rays, MRIs and such with no diagnosis. We then started to see a neurologist who suspected myasthenia gravis, had my mom repeat MRIs and even did an EMG. She told us she saw no signs of ALS and was stumped. My mom's PCP suggested going to the Cleveland Clinic for answers. We were not even there 5 min. when the dr. told us that my mom had a motor neuron disease. 3 mos. later - she has a feeding tube and can still swallow some pureed foods. I am still trying to deal with my disbelief and anger that my mom has to live her final years with this disease. I am with her every day and she has to write things down because I can no longer understand her. I hope and pray that she doesn't have to endure this for very long.

 

[Nikki J]

Hi I am so very sorry about your mom. You sound like an awesome support for her. This disease is so unfair. I hope you are getting support from the ALS clinic ? Also look for your local ALS society.

This site can be a little confusing at first to know where to post. You probably would get more responses under the newly diagnosed, General ALS questions or caregivers section just because they get more traffic
There are a lot of really nice and knowledgable people here. Feel free to ask questions

Best wishes
Nikki

 

[TGB1]

Thanks for the direction Nikki. I really wasn't sure where I posted : )