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
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.