Dewie's Challenge to Her Able-Bodied Friends & Family

To go 12 hours not scratching an itch. Report back to me.

Love,

Dewie

Dewie's Story Part 2

FROM DIAGNOSIS TO ACCEPTANCE

The clinic we are in is very good and provides lots of continuing help in living with ALS, but of course there is no cure. Our clinic in Dallas is part of the University of Texas medical school and is one of several similar ALS clinics around the country sponsored by the Muscular Dystrophy Association, which has an ALS division. They have been wonderful and I now know what Jerry Lewis has been raising so much money for all these years. We have also had a lot of help from the ALS Association of North Texas here in Dallas.

One of the things both organizations have is support groups that meet once a month. So when Dewie was first diagnosed we started going to the monthly meetings of both support groups. One benefit of going was to see how other patients and their families have managed. We met people with all forms of ALS and in all stages of progression of their disease. There were a few who came to the meetings who were in “advanced” stages and had lived that way for many years. It was good to get a picture of what living with ALS would be like. Everyone was very nice and we were encouraged.

When we first attended the meetings, though, we felt almost like we didn’t belong because Dewie’s only symptoms were in her hand. So while she walked and talked without any difficulty we met other people who had lost their ability to speak and who were taking all of their nutrition through a feeding tube or were in wheelchairs and breathing through tracheostomies with mechanical ventilators. We were encouraged that so many seemed to have found a way to live pretty well with their ALS. It also seemed like we had plenty of time to get ready for our eventual challenges.

When Dewie was diagnosed we were living in a three-story apartment. Our bedroom was up 52 steps from the street and we knew we needed to find a wheelchair-friendly place. After looking at what was available in “accessible” housing we decided to build a new home that would accommodate all of Dewie’s eventual needs as best as we could identify them. Our new home is finished now and we have been enjoying it for a little over a year.

But as I said, Dewie’s symptoms have progressed very fast. When she first was diagnosed, we both imagined that we would have more time than we have had before the wheelchair was required, or before the feeding tube was required, or before Dewie wouldn’t be able to talk anymore, or before she would be unable to breathe without a tracheostomy and a ventilator, or before I would not be able to lift her without a mechanical patient lift. We have met each of these challenges, one after another, since October 07 and even though we knew they were coming, we were surprised at how quickly they came.

My first thought when Dewie got her diagnosis was alternative medicine, nutrition, experimental treatment, etc. I was aware of the limitations of traditional medicine. Dewie and I have a daughter-in-law who has bone cancer. I had actually found an alternative treatment for her bone cancer in Germany that works even while she was told traditional therapies wouldn’t. It was and still is a miracle and I was determined to find another. I read a lot about the probability of environmental and nutritional causes of ALS and related treatments. I said to myself and to Dewie, “I will not let this happen! We will connect with other people who have found alternatives to traditional medicine so that the future that ALS has brought to all these other poor people we have met will not be your future.” In those early days in October and November of 07, I believed we would be able to restore Dewie’s good health. I think Dewie believed it – but mostly because I told her I believed it and she in turn believed me. At least she went along. A book I was reading suggested that in addition to good food and supplements and pure water and clean air, we needed to have Dewie’s (mercury) amalgam fillings replaced and we visited a dentist in Houston who proposed a plan to accomplish that. In those days it was easy to believe that Dewie’s ALS just wouldn’t be as bad as we had been told.

But every morning, Dewie and I would notice a new location of her muscle twitches. Even as we researched alternatives to traditional medicine, two things became clear. First, Dewie’s symptoms that started in just one hand were quickly showing up all over her body. Soon, both of her arms and both legs and her stomach and back were all showing symptoms.

Second, the absolute lack of anyone claiming to have had any actual success with any of the alternatives we were looking into began to become clear. I was unable to find anyone who claimed to have even slowed down this disease. No one actually turned us away but no one gave us any kind of explicit encouragement either. The dentist we talked to about removing Dewie’s silver fillings proposed an expensive treatment plan but was careful to steer clear of saying it might do her any good. We had also met one couple in the support groups who had gone to China to get stem cell implants that had some positive results but ultimately didn’t change the course of her ALS.

One day, it occurred to me that I was in denial about what was happening and that I was encouraging Dewie to join me in my denial. It seemed that I was encouraging her to embrace a false hope and that the eventual, inevitable loss of that hope would be a very hard fall. I could see a future where we would have spent ourselves without doing any good and where the significant challenges of living with this disease would come relentlessly anyway and would find us completely unprepared and demoralized. I fell silent. I was depressed. I had reached new conclusions about being able to avoid what was happening but I didn’t voice them for a day or so. I didn’t know how to tell Dewie I didn’t believe in a cure for her anymore.

Dewie is very intuitive. I didn’t have to voice my new conclusions to her for her to read them written in my mood. She too grew silent and one night as we were going to bed, she finally spoke it. “I guess I’m just going to let this thing take me,” she said quietly as she sat on the edge of the bed. “So she is thinking the same thing I am”, I thought to myself. She seemed resigned – and sad. It was a very sad moment.

It was also very necessary - because since then we have both reached a kind of acceptance about Dewie’s ALS – surrender, actually. A great burden has disappeared with our surrender and a whole new experience has opened up to us. As it happened, though, we didn’t arrive at acceptance all by our own devices. We had help.

Walk to Defeat ALS

On October 30th, there will be a walk to raise money for the ALS Association here in Dallas. I will be there and would like to invite anyone who would like to walk with me or donate to check out my Team web page.

There are two organizations that have provided so much help for me over these last few years and I want to help them both with their fundraising this year. The first is the ALS Association and their local "Walk to Defeat ALS" will take place in October. The other is the Muscular Dystrophy Association and they will have a similar event, a "Muscle Walk" next March here in Dallas. I can't say enough about how much I owe each of these organizations and I want to encourage you to join me in helping them continue their work.

Love,

Dewie