Mom has bulbar symptoms
Hi, I am new to this board and have found the information on it very helpful. Thanks to all who share their experiences here. It has really helped me. My mom has been having slurred speech, swallowing and some walking difficulties. She went to see a neurologist a few weeks ago and he suspects ALS. She will see an ALS specialist next week. My question is, if she has bulbar onset ALS, is that a more aggressive form of the disease? Any help would be appreciated. I'm so worried because she does not want to face this at all, which I understand.
Re: Mom has bulbar symptoms
hi . yes the bulbar is MUCH faster. my dad was diagnosed last may with als. he died january 1, 2008. his health fell quickly. we noticed daily changes in his ability to function. i literally mean daily. one day he could get up the step into my house, and 3 days later he couldnt. we finally had to call in the visiting nurses. they were planning to come twice a week. they ended up every day with home health aids daily. that is how quickly he failed.
if your mom truely has bulbar, then she will fail quickly. please be prepaired. i dont know the situation you have as far as insurance and finances. NOW is the time to get her disabilty. the federal govt. will guarnatee acceptance of disability for ALS. Fill out the paper work ASAP. Call a hospice center near you and get some info. call the insurance company and order the durable goods you will need. ie: bed, waklker, chair etc....
if you dont already have the visiting nurses and home health aids now is the time to call them and get services. also talking to the als specialist they will talk to you and your mom about many many ways to prolong her life. ie feeding tubes and breathing machine and thats just the begining. if she decides to prolong her life, (my dad did not) she needs to be clear as to how long these devcies may keep her alive espcially if she has bulbar.
the last few weeks of my dad's life were the worst. he spent many months at my sister's house where she took care of him 24/7. LITERALLY 24/7. she was depressed, tired and lost 20 pounds. it took a tole on her watching our dad die a little more each day.
please do as much research on this terrible terrible disease as you can as quickly as you can. you and your mom must educate yourselves and be in contact with your doctors.
i will be thinking of you and wshng you a lot of luck.
Thank you for your reply. It really helps to know how others handle this. My mom was diagnosed positively in January. She does not want to use things such as walkers, leg braces or anything besides a cane. Her speech gets noticeably worse every week. I am also very concerned because she has lost about 35 pounds since November. My stepfather is there to help care for her, but she is 69 & he is 72. I worry all the time about how we will care dor her. I live about 20 miles away and my brother about 1500 mile away.
I have a child at home and a full time job, but I want to do as much as I can for her.
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