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.

Thursday, October 13, 2011

The Diagnosis

The diagnosis took several months Primarily because no one wants to make that medical decision. As I mentioned in "The Beginning " I went to a neurologist in Santa Barbara, Dr. Delio. He gave me an EMG, Electromyography. The doctor inserts an electrode into the muscle tissue, in various places. Since it was my left leg giving me a problem he started there. He measures the activity of the muscle. That was very unnerving! :) The test area that was affected was tolerable. As he moved the electrode to healthier body parts it was like a hot electric poker pulsating through my body. Not the most enjoyable moment. Thankfully it was over as soon as it started. The EMG may be unpleasant but very useful information. We were able to see which areas were affected , from severe to moderate to not at all.  Other tests were MRI and blood work, to rule out any other diseases, even Lymes. These results were sent to an LA doctor for a second opinion. Of course I got another, more thorough EMG(Oh yay!).
Useful information the doctors gave us:
1. "You have ALS".
 2.Use a walking stick instead of a cane, it distributes your weight better, is better for your back and looks cooler.
3.Gather an "inner circle" of friends and family to broadcast the news and updates. That way you won't be bombarded with questions from everyone you know.
4. Don't do research on the internet, you will hear worst case scenarios. (we did anyway ).
5. The information about Riluzole.
6. The recommendation to join the ALS clinic at UCLA or UCSF.
3/06 UCLA did a questionaire to review my condition, no probing. A breathing test , which told us my lung capacity, which was excellent.The great thing about UCLA is their resources. You meet with doctor first and then you meet with OT, PT, Speech and Respiratory.It takes all morning but they monitor your progression every 3 months and tell you what to anticiate and how to adapt, equipment you will need , vendors, etc. They are invaluable.


  1. Keep it up mommy

  2. Very unnerving! You crack me up! Eagerly awaiting your next post!