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 December 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.

 

[Ms. Pie]

I'm sorry TGB1. It's a rough diagnosis. Vent away when ever you feel a need. Ask any questions. God bless you and your Mom.

 

[JamieL]

I am so very sorry to hear about you mom. My mother will be 71 in a couple of weeks and she was diagnosed with Bulbar onset ALS on 2/18/13. Funny how that is now one of "those dates" that rolls off the tongue. I can relate to the desperation, the anger, the sadness. Please don't let it consume you. It IS easier said than done, I know. Big hugs to you.

Jamie

 

[Amy Perdomo]

Hi TGBI - so sorry you have to be here, my mom was 73 years old and was diagnosed in sept /2011, she passed January 16,2013 with symptoms 6 months prior to diagnosis...1 year and 4 month...that was a blessing that she didnt suffer for a long time, my #1 advice to you is while she can still communicate with you, you should record her voice i think thats what i regret the most....my mom also got to the point where she was not able to write, what she wanted to write didnt come out like she wished and nothing she wrote made any sense....to see your parent such a strong figure like she was to me, like that is a devastating thing...just ask....this forum is excellent...they have so many ppl that will answer ur questions and give eachother some sort of comfort...i thank god for this forum...they should have one for spanish speaking relatives also, i had to relay everythign to my older uncles (her brothers and sisters there are 13)...thanks to this forum i learned so much about a disease i had never heard of before it struck my mom...i will pray that god gives u strength for this battle....oh and the most important thing...kiss ...kiss...kisss your mom tell her how much she is loved....make everyday like it was ur last, i know that sounds corny but its the truth !
Amy

 

[Nighthawk]

Mine also started as Bulbar onset. But, I didn't start noticing it myself. It was my peers at work and my supervisor who noticed it as they were having a hard time to understand my words. I had thought it was a sick joke from them to me but, when at home, my family also told me about how slurred my words sounded, then I knew something was wrong with me.

The rest is history. My diagnosis was made at JHU in 2011 and, though my Neuro told me about very grim expectations for me being Bulbar-ALS (about 12-18 months he said) but I guess I' am so far defeating his odds. Everyone is different but, the secret is to live each day to the fullest and have love and support from your family. To feel yourself being loved by them and that you are very important to them and, even with the limitations imposed upon you by the disease they still treat you as if nothing had happened.

I think that is what really counts.

 

[TGB1]

Hi Amy,

I'm sorry about your mom's passing. Unfortunately, my mom's voice is already too far gone to be recorded. And her writing is also beginning to be jumbled sometimes - but she can usually get words down that I can figure out. How long did your mom have symptoms before she was diagnosed? It is sooo hard to come up with some kind of timeline in my head for how much longer my mom has. Did your mom had a peg tube? Did she have any breathing assistance (vent) before she died? My mom already has a tube but is not interested in a vent, and i am in agreement with her about that. Thanks for your earlier post.

 

[Amy Perdomo]

TGBI -

My mom had slurred speech like 4 months before she was diagnosed with ALS, and thats because i went with her to her PCP, she kept telling me he would tell her there was nothing wrong with her, but her slurred speech got worse eventualy..timeframe you never know...since my mom started with the bulbar onset first when she passed she was still able to move and walk a little but just got very tired all the time....my mom lived for 1 year and 4 months after diagnose, but again this is different with everyone. In september 2012 (her bday actually) she got a peg tube inserted, she lived with the peg tube for 4 months...when we decided to put the peg she was no longer able to eat or drink anything, she hated the fact she had to get one, and she hated when i fed her the jevity 1.5 formulas that go in the tube. i always wet her lips and brushed her teeth 2 and 3 times a day, always have chapstick handy you will need this alot. Yes, she had the Bi-Pap at first it was only for night time, but rapidly her breathing became worse and she got out of breath alot during the day, i would try to put it on during the day but most of the time she would yank it off, there is so much you can do..i tried and she never got used to that......my mom never wanted the vent and i too agreed with her...i prayed to god that he would take her in her sleep with no pain and thats exactly how it happened, this monster disease is horrible...but atleast it was very quick for her, unfortunately i dont have her anymore, i cant hug her and just sit next to her for hours in silence anymore....i miss her terribly...every day is a struggle for me without her...but im glad she didnt suffer like i see alot of people suffering for years with this awfull monster..i wish you peace, whenever you want just write me and ask anythign you want...if you go to my albums you will see my mom i have pics there of her...she is my rock !
AMY

 

[TGB1]

Did she live with you Amy? My mom lives about 5 min. away from me. My niece (22) has moved in with her so that someone is there overnight. I am with her a couple of hours in the am and a couple of hours in the evening. My sister - in - law is with her for a while in the afternoon to do her feeding. I know she is lonely, and am thinking of having someone come in once or twice a week for a couple of hours just to kind of hang with her. The communication thing does make this a bit challenging. How did you handle this? I have been told that bi pap is difficult for people with bulbar, and I'm not sure my mom would be comfortable with it. So far the breathing is (I guess) ok - she does tire very easily. I also pray that she goes in her sleep, and that we don't have to make any impossible decisions.

 

[momap53]

BiPap may help with some of the fatigue. It helped me to sleep through the night. Nasal pillows allowed me to wear my glasses and read or watch TV