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, January 8, 2012

Surrounded by Angels

Something so profound started in '07 and still continues today. 3 girlfriends and I met at my house once a week for a Beth Moore bible study. Our common friend factor was our kids went through grade school together, Ashton 's class, and church. Some of us knew each other well  and other relationships where new. In hindsight we were brought together for a reason. They are my Angels. During the study we became increasingly close. These friends watched the ALS progress and witnessed the physical, emotional and family impacts. Lori, Susan and Nan became part of the Inner Circle and helped communicate our family status and needs to the community. Many people in the Valley wanted to help but they didn't want to intrude.
As my mobility weakened they were first to come up with ways to help. Monday , Wednesday and Friday  one of the Angels came over to cook for my family. I would choose the recipe, purchase the ingredients and they would prepare the meal. They did this for a year!
 People in the area started asking how they could help us.  Susan organized a meal group/ministry, our Meal Angels . Those interested  would sign up to bring a dinner for my family . This was an enormous gift. Steve was always the weekend cook and I did the everyday meals. I did not have enough mobility in my arms to cook anymore. I could not imagine Steve making dinner every night after work and commuting to SB, he would crack. Receiving 3 dinners a week has given the kids a routine and a sense of "normalcy". To this day we still have dinners delivered Monday and  Wenesday, many of the families have been with us since the beginning. Our Meal Angels come from all over the Valley, a true community effort. Our 3 Angels have shared the organization efforts, with unselfish fervor . The Meal Angels go out of their way to bring us healthy and fun meals. Chris, Steve and my mother look forward to the meals and there is usually a thoughtful extra dessrt with Chris in mind.

 Grandma , Nan, Susan, Lori and Sammy (dog)

Janis doing her magic, Wanda looking on. 
Another Angel: In October '07 I get a phone call from Janis. I had not met her but we have several mutual friends. Her fiance had just been diagnosed with ALS and she had questions. We quickly become friends. John had a very fast type of ALS and it started in the throat and lungs. I still find it amazing how ALS can hit people so differently. We talked often on the phone, comparing notes and giving each other words of encouragement. Janis was the first person I had spoken with that was personally involved with ALS. Unfortunately John passed within months of his diagnosis. I was glad to be there for her. Truth be told, she helped me much more then I think I helped her. She is an Angel.  Janis and my Steve organized a community car wash to raise money for our growing medical expenses. Another testimony of our incredible community. Janis comes on Wednesday and we catch up and read. She used do nails professionally so once a month she gives me a mani/pedi. I am now noticed for my beautiful nails! Something I NEVER had before the ALS. Pretty easy since I don't do dishes anymore. :) 

Another Angel: One thing that PALS (people with ALS) need to be watchful of is stiffening / freezing of the joints. Nan recommended a Massage Therapist, Diane. I had only had massages as a vacation luxury but it sounded like a good idea. Diane came to my house twice a week and gave me an hour each time. Pretty decadent, right? It was obvious that this was a much needed therapy. As time went on our expenses grew, especially when I went on the ventilator. I had to cut back with Diane to once a week.   Diane was very sensitive to our financial needs and after reducing our rate a few times , she offered to continue as a gift!  We have been together since late '08. This is another enormous gift. I know for a fact that the reason I have good range of motion and good flexibility is because of Diane.

Lori, Nan and Susan still come over, every week. Each has a different day, Monday, Tuesday and Thursday. They come over for a couple hours. We visit and talk about what is going on in our lives. They help me with business calls and yucky, complex business situations (insurance and medicare).  We choose an assortment of books and try to get in reading time each week. Between my audiobooks and the books they read to me, I am usually involved with 5 books at a time. Very fun.  Diane and Janis come on Wednesday, my pamper day! These Angels bless me with so much. They encourage, challenge and support me. Incredible people that feed my soul and are a big part of why I am doing so well.
There are many articles that state good caregiving is key to staying healthy.  I realize that sounds like stating the obvious but you would be surprised to know that what I have is not the norm. There are so many PALS that don't have family nearby or are in a facility with limited stimulus other then the staff. 
I have a wonderful team of family, Inner Circle friends, Angels and caregivers. (You haven't been introduced to my caregivers yet).  I am truly thankful and truly blessed.

Matthew 6:3-4:  "But when you give to the needy, do not let your left hand know what your right hand is doing , so that your giving may be in secret. Then  your Father, who sees what is done in secret, will reward you.
All of the Angels are true gifts to me and my family. Thank you for your fellowship.