Recent content by Brentt

The lazer pointer and a baseball cap or a pair of glasses is a great quick fix. Until you can find an ALS loaner closet to help provide a SGD (speach genterating devise). You should find out if she has Medicare and if she can get all the benefits that come along with it. Parts A, B and D. This...

When I replied to your post about the rilutek, I forgot to mention that I was placed on a vent in June 07. So after 2 and a half years it hasn't kept my ability to breathe up to par. Everybody's different though, as you know.

I have been on rilutek for about 3 years maybe more. While I was doing a study drug at the university of miami I got the same information on it's benefits. 1 or 2 years. If your doctor will assist you, there is a place called the national organization of rare disorders.(NORD) They may pick...

Hello Del, I have a website by SPRINT that may help you to talk on the phone. All you need to do is type in the box what you want to say and their reply will appear for you to read. www.sprintip.com It requires patients for the other person but most als places will be kind and wait while you...

Hi Don, sorry to hear about the pain. Pain can be a hard thing to block at times and it takes different meds. for different people. I have been through many different pain killers and the only one that worked for me was methadone. Maybe this will help you get rid of the pain part of your...

Hello Caroliney, I am thinking that you are talking about removing the air from the cuff. This is a common practice as it allows the build up of mucose to either be suctioned out with the catheter or coughed out by the patient providing they have the strength to do so. If you are removing the...

Hey there Al, thanks for the funny. I got a kick out of that. And I live to laugh. It's the best medicine of all. I think Laughfters Best Medicine, from Readers Digest and Paul Harvy were 2 of the best things I have enjoyed in this life. And thanks for the link Jeff. You too Cindy. I...

Can ALS affect the eyes? All I have left to communicate with are my eyes. I have never heard of there being any problems associated with ALS and eye diseases or loss of sight. What about the muscles that control the eyes? Can anybody answer this question? Brentt

Dear Juanita, the HME is a device that helps to keep moisture in the lungs. If you remove the HME over night, it could cause mucose plugs to happen more frequently. Also with the drier weather comming this could complicate the hummidity which is important. I get saturated all the time so my...

Hello Teresa, I have had my peg now for a little over a year. I lie on my back all night long. I never have any problems with it leaking or comming lose. If it did leak there is a way to tighten up the flange on the surface which would stop it from leaking. I take a shower every...

Hey there Joel, since no replies to your question about residual nutrients or foods and the PEG has not been answered yet, I'll share with you what I have learned. Before a feeding, you can simply insert an open bolous or (syringe) into the peg tube. Then hold the syringe at or below your...

Hello Rhonda, I'm sorry to hear about your pains with your new peg tube. It might take a week or two to get used to how much formula to take in and how fast it should be consumed. Your stomach isn't used to expanding so rapidly and that can cause discomfort. If you feel bloated, it could be gass...

I wonder if ALS is an exception to the rule when it comes to the ignorance of the medical community. What I mean to say is, when people have other nasty lung complications (other then ALS) the home vents may just be impractical for many reasons. Can you imagine trying to combat infections...

the pain Hello Capt. I have some problems with my lower back that caused severe pains in my legs and lumbar. I have 3 buldging disc's in my lumbar spine. After all the ex-rays and the MRI's the physical therapy and the injections into the disc's I finally was put on methadone. I hated...

eyegaze Hello Carol, I was looking at this site today and saw your question about a tutorial on the use of an eyegaze system. Well I can fill you in on as much as I can. There are 2 types of eyegaze systems, the desktop and the portable unit. I have the portable eyegaze system. The portable...