Caring for a loved one with ALS is a challenge, because a there is so much that you have to learn.
First of all the disease is unpredictable. Because this is a condition that affects the brain and ultimately changes a person’s ability to function, you need to be paying attention to what your friend or loved one is experiencing and report that to the medical professionals you are working with.
Symptoms of muscle weakness in the hands and legs seem to be some of the first changes that people notice. There can be sensory changes that go along with that as well. Muscle twitching is another symptom that physicians familiar with the disease, usually take note of. As the disease progressives, changes in walking, balance, and coordination impair the person’s ability to function. It is an emotionally trying situation, because as each stage of the disease incorporates an additional decline, more functional limitations are experienced.
Here are some ideas to consider as the need may arise:Look for support groups in your area that may be familiar with the disease.
- Go to the ALS web site and ask for local resources in your area, to make sure you have not overlooked any possible help that is out there. (www. http://www.alsa.org/).
- There are some medications available that are being used by neurologists that are being evaluated for their effectiveness in slowing the disease progression, so make sure that you go to a neurologist that specializes in movement disorders.
- When you are seeing a limitation in the ability to hold eating utensils securely, send us an email and we can direct you to some resources.
- For bathing ideas and grab bar placement, send us an email and we will send you a guide to grab bar placement.
The most important thing to remember is that you are not alone. There are resources out there to help you. There is no good disease to have. Every disease has its limitations and difficulties. Education is the key to making things easier. We are here to help you. Let us know what you need. xo Sally