Recent content by KellyandKay

Just a quick comment on one topic. Manually removing feces may become necessary for any PALS at some point. As unpleasant as it is, if the PALS is sitting on the bedside commode and reaches the point of no return but can't finish, you have no choice. You can't wait for medicine to work, and...

In my case, it took over 6 months after my wife passed away to get back to "normal" physically, and much longer to do that emotionally. Allow yourself time to heal. You will eventually be able to remember the good times without being reminded of ALS. My wife was concerned that her...

My wife was in a clinical trial for minocycline, a commonly-used antibiotic. Preliminary trials had shown promise and some PALS were already using it. Kay had severe side-effects and had to stop using the drug (although she stayed in the study to contribute to the research data base.) The...

I am glad it has helped you. My wife, Kay, started using it when she was first diagnosed and had no side effects. Our insurance covered it, except for a small co-pay. The researchers are looking at any and everything that might cause, or help, ALS. They start with analysis, then go to a...

If you can afford Rilutek, I recommend taking it. So far, it is the only medication that has been demonstrated to help PALS in clinical trials. Until the researchers can find out what causes ALS, speculation about chemicals like aspartame is just that -- speculation. The following information...

I suspect it is the morphine that is the problem. My wife could not tolerate morphine. Among other adverse reactions, it made her have hallucinations. She was fearful, and would stare into the corner of the room at imagined things. Sometimes, she would describe what she was seeing. As soon...

ALS directly affects the voluntary muscles, but, ideally, the smooth bowel muscles are not affected. However, constipation is common in ALS, if only as a result of inactivity. As the abdominal muscles lose strength during ALS, "pushing" to assist in elimination is diminished. When my wife...

Our hospice had a meeting once a month to schedule the level of care my wife needed. At the start, they sent out two aides three times a week for personal care, including bathing, and a nurse once a week. That was sufficient for a long time. Eventually, the aides were coming out every day and...

Is it possible that the Bipap makes your Mom anxious? My wife's biggest anxiety was about choking. When we got her a Bipap, she had no strength in her hands and arms to remove the mask. Her fear was that she would start choking and be helpless. She also couldn't do a very good job of...

Hospice benefits PALS in many ways. For example, my wife was on hospice for 17 months, and never had to go to a doctor's office. This was a great benefit since she was not physically able to travel. Half of her hospice time was on private insurance, and the reminder was on Medicare. The...

I looked all over the Internet and found very little that we could use. Personal emergency devices almost always require pressing small buttons. Home security systems are almost always hard-wired to a monitoring service, with a monthly fee. There may be alternatives out there by now. The...

I lost my wife to ALS last year, and would like to pass along one method of communication that we found helpful. In the early stages, I could go outside and work, and she would call me on my cell phone when she needed help. As time passed, her hands and arms grew too weak to use the phone. I...