Being diagnosed and having to cope with a condition such as ALS, or amyotrophic lateral sclerosis to give its full name, is challenging to say the least.
Being newly diagnosed with ALS can be frightening and the future may certainly look uncertain. Most people don’t know what to expect and it can be a steep learning curve finding out about the disease and working out a way to cope daily with it.
Online sites often point to the physical symptoms associated with ALS, things such as loss of mobility and muscle function, being unable to chew or swallow properly or issues with breathing.
There is, however, also the emotional challenge that ALS presents, not just for the person with the disease but for the friends and family who will care for them.
ALS is a degenerative disease that has no cure and is unfortunately fatal. Getting support when diagnosed with this condition is vital and can provide a valuable way to help the individual cope with what lies ahead for them.
The good news is that there are networks and local chapters across the US, as well as online forums, where information, support and help can be found.
Here we take a look at the benefits of ALS support groups and how to find them.
Someone who is diagnosed with ALS might start off thinking that they are all alone. It remains a relatively rare disease after all. Accessing support groups that are either online or operate locally is a great way to meet and communicate with new people who are having a similar experience.
Support networks are a great forum to share experiences and find some useful tips for managing a condition such as ALS. People can discover, for example, how to improve mobility and stay healthy for as long as possible or find out about new research that may offer some hope for the future.
Support groups are also safe places to discuss feelings and work things out with someone who understands what is happening. Seeing how other individuals with ALS cope with their condition can build confidence and provide a timely lift in spirits.
Many support groups don’t just have members who are dealing with ALS, they’ll invite guest speakers and run workshops on how, for example, to improve the condition through physical therapy or develop better nutritional habits. These sessions can be invaluable, particularly for newly diagnosed individuals.
ALS support groups can also offer help to family members, friends and caregivers. Communicating with others in a similar situation can be a great way to learn how to cope with difficult situations, express emotions and also build a community of support.
The ALS Association has a number of different chapters in each state, many with their own websites, which meet regularly and offer support. The Arizona chapter, for instance, helps people find services and raise awareness of the disease in the local state.
If there are no support groups locally, the good news is there are plenty online. The internet is a great source of forums and chatrooms that are entirely devoted to people with ALS.
The ALS community forum is one of these and has thousands of different threads on many subjects, covering everything from being newly diagnosed with ALS and latest research to tips and tricks for coping with the disease. People are online all the time and anyone can take part in a conversation, ask questions and get the advice and support they need.
The ALS Therapy Institute Forum is a similar community that provides a safe place for those with ALS as well as their care providers, family and friends. There are also a few neurologists and physicians on the site. Most of the posts are about living with ALS as well as the current state of research and treatment options.
Many people start by visiting support groups and forums online when they are first diagnosed with ALS. It’s a non-confrontational and safe way of getting to know more about the disease. What they find is that they are not alone and that there is always someone available to give advice.
Being diagnosed with ALS doesn’t mean being alone. There is a big network of support in most states across the US, in numerous other countries and also online. They help individuals and their loved ones understand the challenges of living with ALS and provide an opportunity to meet and communicate with people in a similar situation.