ALS (Lou Gehrig's Disease) is a huge part of my life because my mother has it. She's gone through a lot the last few years and as her primary caregiver, I've seen it all. So I created this page to try and be as helpful as I can to other ALS patients, families and caregivers. If I can at least make someone feel less alone, then I've done something decent.
The ALS Foundation defines ALS this way: "Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed."
For more about what ALS is, visit the ALS Foundation About ALS Page.
I will try to provide first hand information here, with one caveat. In my experience, ALS affects people differently. Five people with ALS can have five different progressions, which is one of the reasons finding cures is so hard. My mother's started in her lower extremities, causing her to be unsteady and need a walker. It is now attempting to affect her arms, but her breathing hasn't been hindered yet. A man in her support group lost his ability to speak first, and maintained fairly good body control for some time. Sometimes it progresses slowly - some live 10 years or more. Other progress rapidly. But not all hope is lost. Guitarist Jason Becker's ALS took him over very quickly and he is now immobile and uses a respirator - however quite some time later he is still alive, he says his disease has not advanced since, and he still writes music for other to play for him. It's all about mental conditioning.
Here are some of the things I've learned personally since October, 2006, when mom was diagnosed. You may see your situation in some or all of these. If you do, then now you know you're not the only one. When it comes to the psychological issues, I've confirmed them with therapists.
- If you leave a Genotropin pen out overnight, it's useless. This is an oops moment I had recently. Luckily it wasn't new, so I didn't waste as much money as I could have.
- Medicare is notorious for not being very helpful. When my mom wanted to give me a break and get some in-home cleaning help, she was told she couldn't get any because one, she made too much money when she worked, though she didn't make enough to afford the help by herself, and two, even if she fell into financial guidelines, she would have to sign something saying she would never drive again. She'd essentially have to give in to being a prisoner to other people's schedules. Our theory is, as long as she can drive in her car, she should. However, Medicare did help with her motorized wheelchair. Be careful with this though - think ahead. If you have Medicare help with a non-motorized wheelchair, they will not help with another one down the road. So figure out what you might need most later, and ask for help with that. Medicare paid part, the MD people payed for part and the company we bought through (the awesome Bird and Bear) wrote off the rest. We got a lift recliner through the local MD loan closet. Because ALS is close to muscular distrophy, they are sort of under the same unbrella. So if you can't find an ALS support group, go to an MD group. They can help too. Many have loan closets where you can borrow important equipment, which is a lifesaver when you can't afford some of this stuff.
- If you get a rampvan, invest about $30 in some traffic cones. Trust me, people are, by and large, either very stupid or very uncaring, and will happily park in a way so you or your patient can't get in the van again once you've gone somewhere. Set up traffic cones in the space next to your van to try and ward these morons off.
- Make arrangements with airlines ahead of time if you travel by plane. Otherwise they will look at you with blank stares when you get there. They will actually look at someone in a wheelchair and say, "well can you climb up about 15 steps?" But if you have a plan in place with them, it can pave the way to one of those motorized elevators they have, some transport help and sometimes a ride on the luggage cart.
- Alternative Treatments. Mom has tried several alternative treatments because, unfortunately, the medical community doesn't have a whole lot to offer. I will try to get her opinions on them for you, but I'd have to ask her first. Currently she is doing IVs five days a week, alternating calcium with glutathione, as well as six injections from a Genotropin pen per week. We're attempting to destroy free radicals and get as much use out of her remaining muscles as possible. I'll let you know how it goes.
- It is natural for an ALS and the people who care for them to have moments of depression, anger, and frustration. Sometimes it seems like you're angry at your patient, when you're really just mad that they have to go through what they're going through. And an ALS patient is sometimes angry at their situation and take it out on people around them. It's important to realize that they don't mean it. It's frustrating to no end to have a disease no one had an answer for, just as it's frustrating for a caregiver to only be able to help out to a certain degree, but not end the problem. Don't feel bad about these feelings - give yourself some quiet time, practice stress relief and take little trips when you can. If you're a caregiver, build a small team of people who can spell you. Divide responsibilities. It will save you a lot of stress along the way. Try and remember to enjoy this time, and do as many things to have fun as possible.
- An unfortunate side effect of any illness is that the patient will probably lose some "friends." But the ones that stay are the only ones you'd want anyway. It's something to be prepared for, as much as that is possible.
- Stay out of a wheelchair as long as you're safe walking around. When you feel unsafe, that is when you spend more time in a wheelchair.
- Support group meetings are for more than "support." You can find good friends and a lot of help there. Ours spends more time on friendships and help than on anything else. ALSA.org has a list of local groups here.
I'll update this page as I learn more.
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