Our first experience was in September. We had no idea what to expect. The meetings are kind of social and not tightly organized. Members of the group can suggest topics, and Anne arranges to have someone there to address a specific topic. Each month, they arrange to have some pizza or deli sandwiches there, and we are encouraged to bring something to eat. So you walk into the meeting and everyone scopes everyone else out with extra curiosity aimed at the newbies. As the couples or individuals arrived, it wasn't necessarily obvious which person was the ALS patient and which was the supportive spouse, so if it wasn't obvious, one of the two would point to the other and say - it’s him or her. Of those we've met so far, the ratio of men to women with ALS is about 50/50. If someone comes cruising into the room in a wheelchair, it’s pretty obvious what's up. That first meeting we had wheel chairs, walkers, canes, and then there was me walking in on my own two feet (just like my daddy taught me). The first 1/2 hour or so was spent visiting and getting to know the others in the group. Before we introduced ourselves, I felt a little out of place with no walker or chair. But when it was my turn, the others heard me speak and I could see the recognition in their faces. It was like - OK, your legs still work but your mouth is screwy, so I guess you are one of us. "Hi, I'm Kevin, with bulbar onset ALS diagnosed May 2012! Happy to be here!!"
As I mentioned, members of the group can suggest a topic. In September, a family member who had recently lost a parent brought a speaker. He was a Cache Valley dairy farmer, now a nutritional supplement salesman, and he was there to tell us all about the miraculous curative powers of bovine (cow) colostrum. So - we all know that the first nutrition delivered by a mother to her new born child is colostrum - not milk. Colostrum is important because it helps the baby have its first bowel movement, and delivers antibodies from the mother that help the baby’s immune system - very important. Well, apparently, an industry has sprung up around bovine colostrum. Not everyone in the group felt this way, but I have to admit that I felt like I was witnessing the performance of a frontier snake oil salesman. According to him, there was virtually nothing that could not be cured with this stuff, so why not try it on ALS. He was offering samples for us to try and report back to him how we felt. Not exactly a scientific trial.
Fortunately, the ALS clinic nutritionist, Kari Lane, was there. She offered a balanced, medical perspective and had some actual test data showing where this may be helpful or harmful. That saved the evening for me. Both Gerrí and I were ready to bail out when Kari stepped in and the rest of the evening was a very helpful discussion of diet and nutrition issues, including discussions about feeding tubes and such. These are all things that we will likely have to face, and some in the group already have feeding tubes. These tubes go directly into the stomach and are not visible under the clothing. They don't prevent a person from eating the regular way, but when an ALS patient has a hard time maintaining his or her weight, the feeding tube is recommended. They don't like us to lose weight.
So, this last meeting was a little different. I think Gerrí and I both felt more comfortable with the group. They are really nice people stepping up to some pretty tough and scary challenges. There was a new woman there named Gail. When it came time to introduce herself, I had a feeling like I was meeting a long lost, but close relative. She sounded like me - same weak and nasally voice quality and same slurred speech. I don't mean to say that misery loves company, but really, I just felt that I had met someone who I could identify with; someone who was experiencing some of the same things that I am. A sister! On top of that she had a really cool and compact walker - I mean if there is a sporty model of walker - this was it.
The speaker that evening was an attorney who was there to review legal problems that come with getting older - and all of us at that meeting are "older" than we might otherwise feel. We reviewed estate planning, wills and trusts, other legal issues, as well as legal services that are available to people over 60. It was all really helpful for us or any other person with or without ALS.
But for me, the highlight of the evening was meeting Gail and having a sense of kinship with someone who I felt shared my own experience. Unless a person has had this experience, it is hard to understand how difficult it is to reconcile the way you sound in your own head with what actually comes out of your mouth.
In my church calling (which I don't have anymore) I was assigned to speak in other wards (congregations) and I had to make announcements almost weekly in my own ward. I have never really had a fear of public speaking and, as long as I have prepared myself, I have felt reasonably confident. But, as things changed, when I would get up to announce an item of church business, I would return to my seat next to Gerrí thinking, "what the heck?" When that happened and I saw a tear in Gerri's eye, I knew that "what the heck" was that whatever I said came out messed up. Not very fun, and not the best confidence building experience. But it is really nice to know that you aren't the only one dealing with that particular challenge; that someone elses knows from their own experience what that is like. So . . . Gail, thanks for coming to group. I hope to see you there next month.
A quick aside about my church calling - Shortly after I was released from the Stake High Council, I was called to be the Bishop's executive secretary. In that calling, I spend time calling people on the phone to schedule interview appointments for the Bishop and his Counselors. So, the only thing that is harder than talking in a normal situation is talking over the phone. Fortunately, I have found over the last few weeks that a large percentage of those who I call have cell phones and respond to texts. Last week I made the majority of the appointments by text. At this point in time, I sound like a "normal" person via text.