Today is a Good Day

Today is a good day. The house is clean, our path towards getting our house rehabbed to allow handicapped accessibility has taken an unusual turn for the better (a miracle, believe me), and Bill feels good after taking a nap. All those muscle cramps and twitches can tire out a body, so my husband is taking daytime naps now.
Although people living with ALS are recommended to continue their daily activity, ALS works

uniquely with each person. That's why one of the first things my husband Bill and I did was to register with the National ALSA Registry. It is a data source to help estimate how many cases of ALS have been diagnosed in the US. Its purpose is...

"...to quantify the incidence and  prevalence of ALS in the US, examine risk factors such as environmental and occupational factors, and characterize the demographics of persons

 living with ALS." (The ALS Association Greater Chicago Chapter 

Care Services Support Newsletter, September, 2016) 

From this same Newsletter, a reader can discover news on clinical trials, health and housing grants, symposiums and conventions, fundraising events (like the Ice Bucket Challenge) and more. We hooked up with a rep from the Chicago Chapter of ALSA who clued us in to benefits such as Illinois Property Tax Exemption, the closest ALS Clinics and the benefits of going to them, local support group meetings and veterans' benefits.

Speaking of veterans, make sure you contact a representative of the affiliated organizations (like Paralyzed Veterans of America and AMVETS) to find practically all the benefits you need to be able to keep your house, get it rehabbed for handicapped accessibility, and even get VA compensation monthly. This compensation is tax-free AND in addition to government Disability compensation from your local Social Security office!
If it weren't for the Veteran's Administration, we would have lost our house. The two checks that come in every month have been a Godsend to us. Then we learned that there are  veteran's grants for rehabbing the house. We could never have done this on our own. Add this to the free healthcare and equipment offered by the VA hospitals and we could actually start talking about other things besides, "How are we going to pay for all this?!"
Here are some awesome links to great sites that give you much-needed but little known information for ALS patients and their families:

http://www.alsa.org/ -the best starting place to find local chapters, learn about the disease

http://www.alsa.org/assets/pdfs/advocacy/vso_contact.pdf -Each PVA office is staffed by National Service Officers trained in VA law, benefits, and healthcare.

www.alsindependence.com -People helping people

https://strongly.mda.org/can-we-talk/?gclid=CMDW6o3u-9ACFQ6paQodRVQEqw 

-News items, personal narratives and first-person accounts from families, 

researchers, clinicians and supporters

These are just a few places you can go to. Google is a great place to choose webites to go to, but the most important one is the ALS Association (ALSA.org). Know the disease, know your rights, know your benefits.

Keep in Mind: You are LIVING with ALS, not dying from it.

We cannot banish dangers, but we can banish fears. 

We must not demean life by standing in awe of death.

 ~David Sarnoff