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

The Truth Is Out There

My husband, Bill, has ALS, commonly referred to as Lou Gehrig's Disease. ALS has loads of symptoms, and all of them could indicate some other disease or illness. Since there are no true tests to determine if someone has ALS, a person could go bankrupt getting the battery of blood tests, MRIs, EMGs and nerve-conducting tests, among others, This is the reason why a person diagnosed with ALS has a limited amount of time before it ends their life. For instance, Bill went months of physical therapy with little or no improvement before going back to  his doctor. Tests which took a couple of months ruled out most the the "other" reasons for his symptoms. By then, the circumference, or measurement around his calf, read a whole inch smaller than the other calf.
This is due to the muscles not receiving the impulses from the brain that tell the foot to move it.

When we were putting together a piece of furniture, my husband needed help getting up from his kneeling position. That was the first time I realized how useless his foot had become. I literally had to bend his ankle and then press his foot against my thigh while kneeling behind him in order to let him pull himself up. ALS is a tricky little devil of a disease, though. Not everyone starts with "foot drop" like my husband's did. There are many more symptoms that would lead a person to suspect ALS, including:

• muscle twitching or cramping in arms, legs, fingers or toes
• tripping or stumbling; missing a stair on the way up
• weakness in the hands or ankles
• slurred speech or "nasally" voice
• difficulty swallowing; more frequent gagging or choking when eating
• difficulty holding head up or frequent slouching
• tiredness or fatigue from doing normal daily routine
For more information on symptoms of ALS, click on THIS LINK to the Mayo Clinic

Look at all those generic symptoms! Now you see how difficult it is to diagnose ALS. They all fit other illnesses, many of them curable.
And that's when we came crashing into the wall of reality.

(Photo credit: www.Dreamstime.com)

Incurable.

How It All Began

It started with a numbness in the right ankle. It didn't hurt - my husband Bill just couldn't pull it up toward his shin. We had both experienced frozen shoulders, so we thought it could be the same but in the ankle. The doctor prescribed physical therapy, but after several months there was no improvement.
Then Bill came home in the middle of the day with the news that he'd been laid off. Looking back to that day, we thought that was the worst that life could hand us...
...except that I had a job. Very part-time, very low pay, but I carried the family health insurance.
Meanwhile, Bill's doctor had him doing all kinds of testing for what I thought was "the mysterious illness." It wasn't until he was told to get a second opinion that he finally admitted to a life-changing diagnosis. A month later, it was confirmed and the bottom dropped out of the world as we knew it.

Next came research--tons and tons of research. We found ALSA, the official ALS Association site. Whole lot of info there - almost too much, so take it in doses. Or zero in on what you want to know right away. Then bookmark the site so it will be at your fingertips (pun intended)  whenever you need it. What I did was to highlight and copy to a Word document the parts that I thought would benefit either our understanding of the diagnosis or suggestions that could help us as we traverse that path.
And don't forget that Jesus won out over the Devil because Jesus SAVES (as in that Word document, peeps!)