Hello! My name is Heidi Good Swiacki. I have been married to Steve for 25 years, which has been filled with laughter, trust and love. We have 2 great kids, Ashton 22 and Chris 16. I have ALS, aka Lou Gehrigs Disease. I was officially diagnosed March '05, I was just turning 45. This blog will be about a myriad of topics. I will share my ALS story which will hopefully encourage others. It will show that quality of life comes in many forms. I have to tell you up front that there will be some spiritual references. Don't be afraid or turned off by that. Since I have had ALS I have seen many miracles. Let's be realistic, who can be a happy, non-verbal,ventilated quadriplegic without Faith? I hope you will join me and make this an interesting, educational, inspirational forum. Humor and the ability to enjoy life is required! :)

Heidi passed away 3-25-13 :(

August 4, 2013

Hello, Steve here. To help with the healing process, I am going to continue on with Heidi's blog, primarily talking about our lives and how we as a family are learning to live on with Heidi's memories pushing us forward. Topics covered will be geared towards the affects ALS has on loved ones.

Tuesday, October 11, 2011

About ALS

Sorry for not posting this past weekend, had a headache that wouldn't quit. Steve and I spent the day napping, listening to books and streaming the "24" tv series. Embarrassed to say but we are hooked. 

There was a request to know more about ALS and the diagnosis process.

Please share the knowledge of this degenerative disease.

ALS, Amyotrophic lateral sclerosis, is also known as Lou Gehrig’s disease.  It is a progressive neurodegenerative disease that affects the nerves in the brain and spinal cord. ALS kills the motor neurons that the brain uses to send messages to the muscles throughout the body. ALS most commonly affects those between 40 and 70, with as many as 300,000 cases at a time. Cases are getting younger and the numbers are growing. There is recent research that many veteran's from the Iraq and Afganistan wars are getting ALS. Federal Funding has been allocated from the Dept.of Defense to aid in research for our vets.

There is no cure for ALS but research is becoming more aggressive. Awareness is the first step.  If you would like to know more please visit the ALS Website at http://www.alsa.org/ and the MDA website http://www.als-mda.org/

The perplexing thing about ALS is it is inconsistent how it starts. Some will lose the mouth and throat muscle first which will disable their ability to speak.  Others, like myself will lose the strength in their limbs. We eventually all end up in the same place, paralyzed. There is one medication on the market, Riluzole.  This medication is known to slow the progression. We also understood that at some point the medicine would stop working and the drop off was dramatic.  My physical changes were about every 3 months. The area that was going to be affected next would sporadically cramp.  I opted not to take the medication. I felt I could adapt better by just listening to my body.

The life expectancy is 3-5 years.  That would have been accurate for me if I hadn't gone on a ventilator and feeding tube.

I am getting ahead of myself, that story is saved for later. :)

1 comment:

  1. Great info mommy people need to know