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.

Sunday, October 23, 2011

Adapt, Embrace and make life an Adventure - Part 1

Change is inevitable, it's one thing you can count in life. Fortunately I have always welcomed change. Boy, were we going to be tested!

The first thing I did after the 2nd opinion came in was have a "pity party". That was a long drive from LA and I think I cried the whole way home. Once that was over Steve and I got serious about planning. He was all about the equipment and I took on lifestyle changes. I was not at the Embrace stage yet but we did start to adapt.

Steve bought me a cool mountaineering walking stick, which was much better then the cane. I set out on a mission to de-toxify my body. The family switched to organic foods and juicing. Some friends from work bought me a Jack Lalane Juicer. This machine can make anything into juice, and the pulp makes great muffins. I had read that mercury was a bad toxin so I had my 30 year old fillings replaced with porcelain.  If you ever consider doing this make sure your dentist is aware of the protocols for safe removal of mercury.

The next important task was to form THE INNER CIRCLE. The Inner Circle is responsible for answering the questions that people are uncomfortable asking me directly. It is much easier to ask an unrelated party the awkward question "What's wrong with her?".  We live in a very small valley and even though the central coast wine industry is rapidly growing, everyone knows everyone.The message to the public had to be carefully played. Positive and in control. The speculation that the Controller of a well-known, up and coming winery had a fatal disease would stir up unwanted water cooler talk..At least until we had a plan in place . The first members of the Inner Circle were my close friends and colleagues Anjie, Lynne and Andy. They completely took away the stress of dealing with the public. This freed me up to concentrate on the plan for my eventual transition out of L&L (That was a reality check! ) . There were several things that fell into place that I could not take the credit for. I started to see that there was a higher power at work here. My replacement had to be more skilled than I so she could take L&L to the next level. I do start- up, young companies and we were past that by 2006. She had to be fun and open to change, not too rigid, and she had to like wine.  There was Barbara, a soccer mom, we  became friends  during our  weekend soccer club tournaments. We hit it off, had fun, she was a CPA and she was known  (and respected) by one of winery owners. Now, I am thinking PERFECT FIT. Sure, she was working elsewhere but that was just a matter of persuasion.:) I mentioned lightly that I would be retiring and she was not opposed to talking more. I told the owners that I was giving 1 year notice and why. They couldn't have been more gracious and supportive. When I told them of the potential replacement , Royce (one of the L's) lit up , he was thinking of her as well. We negotiated and started the transition. It couldn't have been a better match.

Anjie and me

Andy, Anjie, and me

Me, Lynne, and Anjie

So with the work decisions made and the Inner Circle at work taking care of PR and keeping me in a constant state of laughter, I was able to turn my attention to the home front.  It's early 2006 and Steve, my mother and I go to UCLA for my first appointment. To get to UCLA by 9, we would start the day by 5. Steve and my mom had to help me with everything. My left leg was dependent and my left had hand was starting to lose strength.  The nuggets we walked away with were The ALS Closet and that we should be researching beds, transfer equipment and shower chairs.  The best part of the day was lunch after. Jerry's New York deli was just around the corner and a Reuben sandwich you could die for!

On our way home we stopped at an ALS Closet in Oxnard. We called ahead and found out they had an electric Hoyer Lift. This is a big metal arm on wheels that picks me up in a sling that is placed behind my back and under my thighs. Retail >$5,000, ALS Closet, free and for as long as needed. We loaded it in the car and couldn't believe how fortunate we were. Again, someone was watching over us. The Closet is a treasure that must be told to people with needs. It was located in a warehouse owned by a wheelchair company so we met a future vendor in the process .

OK, that's enough information and rambling for today. More later this week , maybe even the part where we actually start to embrace the situation. Check back for Part 2.


  1. So I forgot to tell you mom.... The wheel chair vendor you deal with is owned by my best friend Sarah's boyfriends family. I was showing him pictures of my family one day and he recognized your chair and was like, "hey! I make those parts!!"" lol thought it was a small world.. Love u mommy keep it up!

  2. I think it would be great if u put pictures up every now and then :)

  3. Wow, the Inner Circle! Great idea.

    (If I ever get rich and famous, I may borrow it to keep my legions of fans at bay.)

  4. Hi Heidi. Corinne Corrigan from Dana Hall checking in here. I'm reading your blog and keeping up with your story here and on FB. Thank you for sharing your story. What an amazing family you have. I've been taking part in the Positive Spin for ALS fundraiser for the last 9 years here in Massachusetts. I hope there is some aggressive research going on to stop this disease. I'll check back for Part 2. Lots of love, Corinne

  5. I cannot believe that was 2006. 5 years ago??? How can that be? It seems like yesterday!

    By the way, Nina Davies said to tell you hello! Her daughter Carys goes to school at Providence Hall with Hannah. I recognized her last name from that awful employee handbook project and asked her if Heidi Good ever worked for Davies, and of course, she did!

    Keep it goin', mama. It's going to matter more than you know. (By the way, who knew we were such hotties back in the day??? I had no idea!)

  6. Thank you so much for taking the time to blog Heidi. Brian and I are continuing to lift you and your family up in prayer. The strength you have in Christ is amazing. Please tell Steve "hello" from the Bettigas.

  7. I just love learning all these details from your ALS journey. Since I have only been involved in it since 2008 it gives me so much more background on what you have been going through. I know how much effort it takes for you to have time on the computer to do this, so I am very grateful you make the effort to share with us all!

  8. Hi Heidi,.....this is such a great idea for you to have this blog. I am learning so much about you, Steve, and your family, and how you found out you had ALS. You are amazing and such an inspiration to me and others. Keep up the good attitude knowing you are blessing others as you continue on this journey. You are always in my prayers. God bless you!
    Carrie Little