Living with ALS is exhausting, frustrating and every day seems to present a new set of issues. Whether you are facing the complications of ALS for the first time or if you are well versed in what is to come, it is always comforting to know someone has been in your position before. 

This collaborative page was created to provide resources for people living with ALS so that their journey with ALS is a little easier than the journey of those that experienced ALS before them. It was also created to help people living with ALS learn about their treatment options and connect with other people living with ALS. 

Many thanks to the attendees of the SLO ALS support group for motivating the resources on this page. We would like to specifically thank Leslie Sands and her daughters, Laura and Kathryn, for their pro tips :).

Want to add a resource that helped you overcome ALS challenges that you faced? Fill out the comment box at the bottom of the page and we will communicate your wisdom! 

Connect with people living with ALS

ALS News Today has inspiring vignettes written by ALS patients themselves. 

ALS support groups near me: ALSA.org

Learn about treatments other people with ALS are trying: PatientsLikeMe.com 

 

Find ALS clinical trials that are recruiting patients

www.clinicaltrials.gov

www.alsa.org

www.als.net

Pro tips for people living with ALS

Do you use any medical devices that burn through your electrical bill? Check out the PG&E Medical Baseline Allowance Program. It will save you $$!  Keep in mind that the PG&E MBA Application states at the bottom of Part B, that the application must be MAILED to the provided address in Stockton. However, Leslie Sands contacted PG&E Customer Service via email to inquire about FAX NUMBERS for submitting completed applications. Here they are: 1-209-476-7697 or 1-209-476-7694

But wait! There is another way to get a break in your bills, especially when the weather gets cooler. Apply for the SoCalGas Medical Baseline Allowance and experience lower gas bills during the winter months. We all know that experiencing the cold while living with ALS is no fun. Final note: Yes, you can benefit from the PG&E and SoCalGas Medical Baseline Allowances at the same time. 

Have you filled out the DMV Application for Disabled Person Placard or Plates (DPP) yet? This is a great way to save time and energy when getting around town. Leslie Sands did the leg work to learn that once you get your DPP you do not even need to pay the meter since “parking in any on-street metered parking space at no charge” is allowed per California Vehicle Code. Amazing!  Click the link below to download a blank application form. Keep in mind the filled out application MUST BE THE ORIGINAL when you submit it to the DMV. Copies and scans will not be accepted. Wet ink signatures are a must. Advocates are working hard to get this changed but for now, make sure you use snail mail to send the form in OR submit them in person at the DMV. Be sure to make a DMV appointment or bring a good book :). 

Blank Application for Disabled Person Placard or Plates [reg195]

Have you registered with the ALS registry? Your participation as an ALS patient is very important. The more demographic data and scientific data researchers know about ALS patients, the quicker treatment options can be developed. 

Alternative or Off-Label Treatments (AOTs) for ALS

Because ALS is such a rapidly progressing disease there is often no time to wait for the FDA to approve a new drug. Dr. Richard Bedlack at Duke University and the CreATE Consortium understand this and have established standard operative procedures (SOPs) and evidence tables for specific AOTs. The following are link leads to peer reviewed research on treatment options that have not been approved by the FDA for ALS.

ALS Untangled CreATE Consortium Podcast on AOTs

If you are someone living with ALS and have any questions or advice to share please reach out to us and we will do our best to connect you to the right resources or share your wisdom. Thank you for taking the time and energy to help other people living with ALS. Never give up!