Recent content by Sunnyflmom

I'm not sure how up upload a video. Any suggestions?

My initial thought about the challenge was that people were trivializing the disease and using it as an excuse to video and display themselves all over Facebook. I thought that if I were challenged, I would make the donation but decline the antics. Then my 49 year old brother posted his video...

My mom had bulbar onset too. And it was the same as where you're all saying. She slurred her words. Very minor in the beginning. Then we suspected maybe she was drinking (she wasn't). She would choke on liquids. Eventually also lost the ability to speak and swallow. She didn't complain about...

Cape Coral is a great place to be a "snowbird". I've been a permanent resident of Orlando for 16 years but my 3 New Jersey aunts spend Feb and March each year in a furnished rental home in Cape Coral.

So interesting reading all these stories. My husband helped me come up with mine when we moved to Florida the Sunshine state and I'm a mom of 3. While I had always been sort of intimidated by animals, I agreed 3 years ago to get a puppy. Bailey is a sweet cockapoo who follows me everywhere I go...

My mom with bulbar onset would be lost without her suction and cough assist. In fact the cough assist broke on July 3 in the evening and my dad got the company to go to their home on the 4th of July to replace it. She cannot swallow at all so she uses her suction like every 10-15 minutes and the...

Bunker, Oviedo is just north of where I live, not too far. I'm in the UCF area. The PCP we like is Dr Maribel Aviles. She is with the Florida Sports & Family Health at 815 Woodbury Rd 32828. 407-282-3344. She seemed to be somewhat familiar with ALS (Dr Law in Oviedo didn't seem to know or want...

I liked Dr Vu just fine. Basically though he just re-confirmed the diagnosis back in Dec and then sent us on our way. We had to find our own specialists here in Orlando. We left the original PCP who didn't know anything about ALS and didn't seem to want to learn either. So we found another PCP...

Thank you so much for sharing your story. My mom is progressing quite quickly and I wonder every day how much longer she'll be with us. Probably everyone's greatest fear is that passing will be painful or torturous. I pray when God calls her home that it will be peaceful and releasing for her...

My family and I live in east Orlando. We've been to Dr. El-Said on Lake Underhill near Rouse. I really liked him but my mom won't go back to him (I think because he inadvertently directed his comments to me instead of her since she is non-verbal). That was a whole year ago before a definitive...

My family and I are on the east side of Orlando. I took my mom to Comprehensive Neurology: Dr El-Said. He's on Lake Underhill near Rouse. I really liked the doctor. He was very compassionate. Although my mom's illness was in the early stages so he was not able to definitively diagnose her last...

I think my parents pay about $500 per month which medicare covers until the donut hole arrives. Now that my mom is getting to be later stage I was recently wondering if my mom should continue with it. While I'm typically a realist, the thought of discussing it with my mom seems like a sleazy...

This is one thing about my mom's ALS that really irks me. Not the fact that she is non-verbal but the fact that many health care professionals don't document it. My first irritating encounter was when mom went to the ER last month and then got admitted for 6 days due to pneumonia. Initially in...

My mom also has bulbar ALS. She's in her early 70's. She has always been very strong willed so there have been times during this "adventure" that she was resistant to certain treatments but for the most part eventually conceded. Her's began with slurring words and a bit of choking on some...

My mom is being prescribed Ativan. I have not had the chance to ask the dr yet but I'm wondering is it critical that she use the Trilogy when she is sleeping if she's on Ativan? Does she have an increased chance of stopping breathing while sleeping if she is not on the Trilogy? She has not...