skipper66

tomby · May 31, 2012

Hi Kim, not ignoring you, just hard to type.

Been on rilutek sinced diagnosed, can't tell, but I think it has helped me, and I do feel better on it.
Got a feeding tube jan11, but haven't needed it yet.
Blessed to have a great clinic nearby and strong local support groups.
So sorry about your dad
Tom

sadiemae · May 29, 2012

Hi the best way to find info is to hit the search button in the blue bar. Or just google BiPap. It is made by Respironics. Basically is used to help your diaphragm rest by breathing for you. It is a non invasive ventilator, very similar to a C Pap, which people with sleep apnea or COPD use

panguinjen · May 29, 2012

Hi Kim, So sorry to hear about your dad! My husband, Roger was diagnosed in 2011 but symptoms showed up in May 2010. He has bulbar and respiratory onset ALS that has left him without speech now and he is on a feeding tube for nutrition. He injured his left arm in a fall last fall and is now experiencing weakness in his left arm. His ALS doctor is at UCSF which is a 2 hour drive from Stockton as there are no specialists here in town. He is 64 and I am 57. We are leaving for a 10 day trip driving to Tucson and San Diego tomorrow and then are supposed to take an European Cruise 11 days later. I think that will do it for our traveling as he is getting weaker and tired. We have a 10 month old grand daughter that is the light of his life and our daughter makes sure Maddie sees us frequently. He uses his iPhone and iPad with an app called "speakit" to communicate. I know I'm rambling, sorry! It's a pleasure meeting you!

Jen

alador · May 26, 2012

My husband and I celebrated our 60th anniversary last July. You don't find many people named Alma. My best wishes and prayers for your father and your family.

alador · May 25, 2012

Hi, my name is Alma. My husband just had his 82nd birthday. He started with slurring of speech around Feb of 2011. Was diagnosed with bulbar type ALS at Duke. We have since started going to the ALS clinic in Charlotte. He now has a PEG tube and gets all his nourishment that way. His speech is not understandable
I can relate to your situation as we have 4 adult children who are devastated by this. Hugs to you.

sadiemae · May 20, 2012

Hi. You posted this on your own page. Not many will See it. To start a new thread go to the forum u want to post in(Caregivers or People with ALS). And click on new thread in the upper left of the page. Rilutek is the only drug out there and its benefits are questionable. If he has to pay a lot for it I would say no. Is he a vetetan? To answer me click on my name (sadiemae) in blue and write on my page

skipper66 · May 20, 2012

Hi! I am a new member and am very scared. My father who is 77 just found out he has ALS. He is currently able to get around his home with a walker. But, he has trouble getting up after sitting. His voice is very soft and occasionally on the slurred side. He doesn't have much appetite. My dad is debating on using the ALS drug that begins with a R? Any of you using clincal trials? I am so upset. I lost my mother 15 years ago to colon cancer.

skipper66

Find content

Profile posts Latest activity Postings Media Albums About

tomby

sadiemae

panguinjen

alador

alador

sadiemae

skipper66