Patrick and I continue to make the journey each month to the ALS support group in downtown Sacramento. The group provides us with a variety of things; information, understanding and above all a group of fellow travelers on a horrible journey. At any given time, there are 30,000 people living with ALS in America - it's a small exclusive club. It's one of the many services provided by the ALS Association of Sacramento - to whom we are grateful.
When we first starting going to the group there was a woman who came to express her thanks for the support her father had received during his ALS journey. She said her father called it "the greatest club, he never wanted to join." At the time I didn't fully appreciate the comment, but I do now. These fellow travelers have become friends, and comrades. We are an interesting hodge podge of folks from various walks of life - different ages, lifestyles and beliefs. All thrown together because of a nasty disease. The Association provides a lead staff person to each group; patients and caregivers - on my side is Nancy Ferguson and on Patrick's is Nancy Wakefield - affectionately known as the "two Nancys." Both of these ladies have tremendous compassion and their thoughtful consideration during support group does not go unnoticed.
The sad news is that we lost two of our fellow travelers over the past month. These two couples were "regulars" we shared in their journeys for as long as Patrick and I have attended the group. Leanne was a tenacious fighter for ALS patient rights, she traveled to D.C. to promote the compassionate care act (an act that allows ALS patients greater access to medications) and she participated in a number of ALS studies, all the while combating the disease herself.
Tam was faced with bulbar onset of the disease, this means that her initial symptoms started in the bulbar region (head and torso), generally with bulbar onset the prognosis is not very good. With breathing, eating and speaking initially affected, life expectancy is short. Tam fought these odds and lived much longer than the average bulbar onset patient. She excelled at using technology to continue to live her life normally and encouraged other ALS patients to make choices to lengthen their lives.
I'm still recovering from a tremendous sense of loss of these two women. They were blessed in that both had supportive husbands that cared for them during this journey. At yesterday's support group, their spouses told stories of their lives and shared their feelings on love, life and loss. It was for me, a beautiful tribute to these ladies (who coincidentally died a day apart) I will always remember their strength, fighting spirits and support over the past year.
My hope is that you'll never attend an ALS support group, and the statistics are in your favor. But, if you find yourself in need, it's good to know the group is there. I think you'll find it is a tremendously non-judgmental group, passing information, sharing concerns and distributing empathy to their fellow ALS travelers.
To Tam and Ron, Leanne and Bob, thanks for being part of our journey. Your strength will live in our memories!
I am reminded to live each day to the fullest, enjoy the sunset, and find the joy in the moment. We all have times of anger, frustration and guilt - all I can say is, spend a moment there, but don't make them your existence - life is too short.
I really appreciated your blog, Cheryl. I went back and read and skimmed and read some more. The last one I read had your comment "no dogs were hurt in the writing of this blog".
ReplyDeleteGeorge and I are crazy about our dogs too, so I really enjoyed that post.
May God bless you and Patrick as you continue this journey that no one wants to take. I learned so much from these posts. Thank you.
Claudine