Why the Need for Support?
ALS, or amyotrophic lateral sclerosis, can be a difficult, isolating disease. Patients are going through traumatic bodily changes, most quite frightening, and they probably don't personally know other patients with this disease. People with neurological illnesses, or any other chronic conditions, need emotional as well as physical support. Sometimes family members don't see this dilemna. They may be so busy with their own lives (work, family, social activities, or even patient caretaking) that they inadvertently ignore signs of ALS isolation. It is very difficult to be an alcoholic, but it is more common to be one than to suffer from ALS. Alcoholics have extensive support systems to help them meet their emotional as well as physical challenges. Those with ALS have less resources, but the number of these support systems is slowly growing.
Support Sources
- A great way for patients to connect with other ALS patients is to join the ALS Forums website. This site provides latest information about ALS and many online discussion groups. It also has a non-profit directory with various links to ALS societies and associated organizations. Caretakers of ALS patients are also encouraged to join discussions.
- The ALS Association lists local chapters for in-person support. These chapters also help patients obtain assistive devices and contact local ALS specialists for care.
- The ALS Society of Canada lists its own regional chapters, and it includes an ALS web resources page. This provides helpful website addresses, ALS definitions, Canadian health resouces, and much more.
- An easy website that has online support networks for many issues, including ALS, is Daily Strength.
- Finally, a good way to find local, in-person support is to contact your local hospital.
Caretaker Support Sources
Disease Foundations or Societies:
These organizations are not just for patients. They provide information, latest research, area doctors, fundraising information, as well as message boards, chat rooms, and contacts for caretakers. A great way to find such organizations is to search online. A majority of disorders have societies, and a majority of societies have websites. Key the disorder (ALS or other) into a search engine and browse the websites that come up. Within the websites, look for information about local chapters
Caretaker Support Groups (Online and In-Person):
Support groups for caretakers can be facilitated both online and in-person. Online groups (such as message boards and chat groups) can be found at the above-mentioned disease foundations or societies. Or some websites are completely for support. Scout around. Still other society websites offer in-person caretaker support through local chapters. Finally, a good way to find a local in-person ALS support group is through a local hospital. Many of their newsletters provide such information, or you can always call them. For other ideas, read Support for Caretakers.
*****For more information on ALS, read ALS Facts, Dr. Stephen Hawking and ALS and Lou Gehrig's Story.
*****For related neurological information, visit the Neurological ARTICLE INDEX and Blog.
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