Bulbar ALS, anyone?
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Anonymous
| I am caring for a parent who was diagnosed a year ago. No more speaking or eating, drooling and now I worry what’s next-failed breathing, falling and time table. This is truly a horrible disease. Anyone else out there suffering or experienced this and have wisdom they can share? Emotionally so difficult. |
Anonymous
| I have no experience but it is so hard what you and your family are going through and emotionally draining. Is there any support group for caregivers in your area? Wish you will find support in this difficult time of your life. |
Anonymous
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My father passed away from ALS 11 years ago- he also had bulbar loss first. He had some luck with communicating using a magnadoodle (with a large grip added to the magnet pen) and later a chopstick with a laminated keyboard print-out. The disease progressed rapidly for my dad- he passed away less than 2 years after diagnosis. He was in hospice for several months and they were wonderful.
It is terrible- make sure to take care of yourself as well- my mom was my dad’s primary caretaker and it was very hard on her. |
Anonymous
| Please, please contact your local ALS Association. The one in this area is fantastic with wonderful assistance for both caregivers and patients. There is no cost involved. They will help with info, support and supply needed equipment. |
Anonymous
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My MIL had this. She used a speaking board app on her iPad to communicate. The drooling and swallowing issues made it necessary to get a feeding tube, this was about 2 years after she first started showing symptoms. She did not have balance problems and was able to walk, use her limbs and basically do everything besides use her throat and lungs. She ended up ending it on her own, she couldn’t take it anymore.
I am very sorry OP. |
Anonymous
Op here. This is terrible, I am so sorry to hear this. If you don’t mind sharing, how did she end it? My mom has made it known she doesn’t want to suffer too much longer. It’s awful to watch her struggle. Thanks for sharing |
Anonymous
| If she truly doesn't want to suffer, then she should consider Dignitas. In my country, Canada, she would qualify for medical aid in dying. Americans, really are too squeamish or can't accept that sometimes life isn't worth living. I don't know what it is, money to be made by the for-profit health care system? |
Anonymous
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I'm so sorry. My grandmother had bulbar ALS. She lived about 8 months from diagnosis. She had consented to a trach, which I'm not sure any of us, including her, would do again. She died in her sleep a couple of months later.
I'm so sorry. It is a horrible disease. |
Anonymous
| No advice, but just wanted to say how sorry I am that your parent (and you) are going through this. Bulbar ALS is awful. |
Anonymous
| My first cousin, who is only 55, was just diagnosed with this. So young! I am so upset. No experimental therapy or anything? |
Anonymous
| You can look on clinicaltrials.gov to see if there are any ongoing trials they qualify for. |
Anonymous
Yes, please do! The ALS community is extremely supportive and caring! https://www.als.org/support |
Anonymous
Thank you |