Happy Anniversary - What's Next?

Dear Family and Friends,

As I approach my 8th anniversary since when my ALS symptoms started,I reflect on all the wonderful things that have happened. I am still here, which is a miracle in itself! I am grateful for this anniversary knowing that the textbook life expectancy for ALS is only three to five years. I am confident that this extended time is due to the exceptional care I have received ( see 10/12/12 post) and modern technology. I want to describe briefly a few examples out of the many blessings and miracles I have experienced during this time. I often sit with my husband Steve while he eats a delivered dinner. I can hear his delight as he enjoys every bite of his meal which has been provided to us by others. Listening to Steve and Chris discuss their favorite parts of the meal brings me great joy. These Meal Angels(see 1/18/12) have been delivering meals for over 4 years. Faithful and true , these families have given a sense of normalcy to our family. This is such a blessing since our lives are anything but "normal". A hot meal at the end of the day is an incredible tension reducer for us all.

The valley in which we live is a very tight community. The churches have me on their prayer chains,regardless of their denomination. My doctors in this County all seem to keep each other informed of my progress which is very reassuring. So, as you can see,my family and I have a lot of support. I believe our residence here in this wonderful community is anything but accidental.

As many people do, I wrestle continually with the question of my purpose here on this earth. What is the ultimate reason for the rest of my life? There are countless times the Lord could have brought me Home, but I am still here. There must be a reason. In addition to giving unconditional love to my husband , kids, family and friends, I have been counseling newly diagnosed people with ALS, which has been very rewarding. Without the use of my arms and legs, the ALS has left me with my eyes, smile, brain and the use of my augmented speaking device. I have an overwhelming desire to advocate for the many people, who like me, have restricted movement and are hindered by the minimal benefits that Medicare provides. Currently Medicare only provides intermittent help when the urgent need for the patient and family is "around the clock" assistance The caregiving that provides this intermittent care must be provided by an authorized health care agency and such care is far too expensive for almost every patient and their affected families.

What are families to do ? I suppose they do something like my family is doing. They empty their retirement and college funds, sell valuables and luxury items and max out the equity in their home. Since my present longevity was unexpected,we have come to a point where we have nothing left to sell . No accounts left to drain.

We are profoundly grateful for the extra time we have been given together. I have been privileged to live long enough to see my daughter Ashton graduate from high school. This December I hope to go to her graduation from college and next year I plan to see my son Chris graduate from high school. Since the diagnosis of ALS I never thought I would celebrate our 25th wedding anniversary, we just celebrated our 26th. I never thought I would see 50, that was 2 years ago. In these last 8 years my life has been blessed in ways beyond what I ever could have anticipated . I am glad I have been allowed to stay in this life. This experience has been profoundly humbling . It has also been inexpressibly rewarding and fulfilling.

Many of you have asked "How can I help? ". Thank you! The Viking Charities has accepted me as one of their own charities. This is an unexpected gift. If you would like, and are able, to help us with my caregiving needs, you can make a tax deductible contribution to:

Viking Charities , Inc.
P.O. Box 293
Solvang, CA 93464
Payable to: Viking Charities - Heidi Good Fund


You will receive a thank you note with the necessary tax information. The contribution will be placed in an account with my name on it and the Vikings will directly pay my medical expenses. My caregiving costs $100,000.00 a year (and that includes the unpaid hours put in by my mom and Steve ) , which is 100% out of pocket. If you are unable to help in that way please keep us in your thoughts and prayers. Your continued friendship is the best blessing of all.

With love and appreciation,

Heidi Good

Meet the Caregivers

I don't feel well. MBattleship, excellent movie. THEN the weekend continues with Still Steve as the daytime caregiver. AS you can see. , are a team and it amazes me every day the love, patience, Grace and caring these women show me; no matter what. I could be down, frustrated or angry and they are there for me, wiping my tears and making sure I know they care and they love me. These women are strong in their convictions , their faith and their opinions. I trust each one with my life, I have to. That was a very humbling hurdle for me. Each woman brings something unique to the team which makes us one heck of a unit. I have been known to be a little controlling so sometimes there are sparks. Like sisters we get through it with as much grace and mercy that we can and always with love. So ladies , if you are reading this. . . . . I love you, respect you and appreciate you. My heart is filled with thanks. Wanda

Wanda and I met through a mutual friend, Sandy. I was still working with Lucas and Lewellen Vineyards but had moved my office to my home. I was still able to move a little and was using a walker. I was still able to talk. My husband, Steve suggested I get someone that can help me with my physical therapy and be with me as I adapt to the changes I would be experiencing. (Always thinking ahead ) . Wanda and I met and there was an instant connection. She had worked with people for 25 years, from caregiving, hospitals, nanny, teaching and the movie industry. I was her first person with ALS(PALS) but she had plenty of experience with physically challenged. She started out part time and as I adapted to the progression , so did she. She worked days and some nights, to give Steve a rest. As the ALS took over, I needed to be turned at night every few hours, to prevent bed sores. She has been by my side for 51/2 years. Her spiritual and encouraging words are uplifting and positive. We have both grown so much during this, through hospitalization, losing the ability to breathe, to talk , to move. She has mastered all of the equipment and I rely on her expertise for everything. When we go to see a doctor, they ALWAYS say how lucky I am to be with her. I am truly blessed to have a friend like her . Wanda has blessed my life with her caring, empathy and patience. Oh yes, and she got me addicted the the daytime soap, The Young and the RESTLESS : )

Sherrie - When you have a tracheotomy you are not allowed to leave the hospital unless medical personnel are set up at home. Their responsibility is to train the family and other caregivers on the machinery and how to treat the patient. Through the home agency I used I met many wonderful people. One in particular, Sherrie, not only worked with the staff but also became one of my night caregivers. She is an RN and a FNP (Family Nurse Practitioner)so she has a lot of medical knowledge, which was very helpful with all the new machinery. More then that Sherrie and I have become great friends She is a very spiritual woman, a solid Christian. She has helped me explore and expand my walk with God. She says that God put her here for a specific purpose. Sherrie and I just had our 4 year anniversary.Time flies. I feel very blessed to have her as a part of our team.

Annie - she is my Earth mother, very spiritual, believer in a holistic life, very one with the universe. Always a positive attitude and she believes we are put on this earth to help others. We met through Wanda, Annie was taking care of a gentleman confined to a wheelchair. Annie and I have been together for over 2 years. She works nights and fills in for Wanda if she takes a day off. We like the same tv shows and are both obsessed with cooking, recipes and cooking shows. Her care and concern for my well being is very genuine, .

Steve is my primary caregiver and he has the toughest job of all. He commutes to SB every day, works 50+ hours/week and then comes home to take care of me. On Fridays I call it our date night. Steve takes the night shift and we watch a movie.Battleship was last night and we both highly recommend it. He is the one I want with me if things aren't going well or a if I don't feel well. HE is my earthly rock. A remarkable man.

Left to Right : Katie,Cousin Carol, Rosa, my mom Rosa and Katie: These women have moved on in life to other work but they were instrumental in my good health. Rosa is very maternal, motherly. If I wasn't feeling well, or just having a rough day, she would wipe tears an offer motherly advice. I cried on her shoulder many a night. Rosa was also recruited by Wanda to work nights. She is a very quick learner. Annie took over Rosa's shifts. She is Hispanic and communication sometimes got comical, especially when we used the Letter Board but we always made it through . Katie is a sweetie that was just launching her career as a RN. She reminded me of Ashton and I enjoyed watching her go through the process of growing up. Katie joined our team through an agency , she worked primarily on the weekend . I think I re-lived some of my youth through her. She learned a lot when she was here and I hope her practical experience helps her in her new job at the Santa Barbara hospital. I was able to watch her fall in love and get married. I am truly thankful for that blessing. )

Last but certainly not least - MOM. My mom is 86 and has the spirit of 40 and the energy of 60. She gets a daily report from each caregiver, keeps the house in order, helps with Chris and sits with me between shifts. She is Wanda's wing man when we go on outings. It's difficult to live with your mother, most difficult for Steve. But we make it through. It's nice to have her here. : .