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

Dewie's Story Part 1

I am writing Dewie's story with ALS and will post each part as I finish it. For some of you this is old news but for some it may help to fill in where you might have questions.

-Pete

FROM FIRST SYMPTOMS TO DIAGNOSIS - ALS

There is so much to tell. In October, 2007 Dewie was diagnosed with ALS, and I’m not sure how much people know about the disease, but I didn’t know much myself before all of this happened except that it is sometimes called Lou Gehrig’s Disease. I was aware of a book called “Tuesdays with Morie” that was made into a movie with Jack Lemmon. At that time I hadn’t read the book or seen the movie. I guess I knew that ALS was considered to be fatal, but I don’t remember.

Basically, with ALS a person’s nerves that control their muscles just quit working. Specifically the disease is marked by the “death” of both “upper” and “lower” motor neurons because of some kind of dysfunction on the cellular level. Like many diseases, doctors really don’t know what causes it. Research has identified a hereditary factor and a genetic predisposition. Even though no one in Dewie’s family has ever had ALS, that doesn’t mean she doesn’t carry the genetic marker (she hasn’t been tested for it). I think there may be an environmental factor as well because there was a higher than normal incidence of ALS among veterans of the first Gulf War, for instance. Some people think that mercury like that found in dental amalgam can play a role and Dewie was a dental assistant for years and handled amalgam material as part of her job. She also has some silver fillings. I think that there is a connection to Statin drugs that are prescribed for lowering cholesterol because neurological side effects are mentioned on the label, and also because many people have reported getting ALS or related symptoms after taking Statins and finally because Dewie took a Statin for three years before she developed symptoms. But there is no “recognized” connection.

Anyway, what happens because of the loss of “motor neurons” is that you literally loose your muscles one by one as the disease progresses. Your mind is never affected. (It is sort of like the opposite of Alzheimer’s, which affects the mind but not the body.) So ALS takes your muscles away until you are completely paralyzed. Each patient’s disease starts differently and progresses differently. Dewie’s symptoms started in her left hand. The rate of progression varies from person to person: some slow - some fast, and it seems that for each individual, their specific rate of progression, whether slow or fast, doesn’t change. Dewie’s progression has been very fast. There are at least two forms of disease onset, limb and bulbar (referring to the bulbar nerve which controls the mouth, throat and tongue). Dewie’s ALS began with limb symptoms only (her left hand) but soon we noticed difficulty talking and swallowing, so she now has both kinds. Some patients start with bulbar symptoms and misdiagnosis is common, both because the disease is somewhat rare and because slurred speech makes people think, “stroke”. But in that, we were lucky because Dewie’s regular doctor quickly suspected the 24/7 “twitches” in her left hand might be ALS and he sent her to a neurologist and eventually to a clinic that specializes in ALS. The diagnosis is a difficult one for doctors to make even when ALS is suspected and the process is basically one of eliminating all other possible causes of the symptoms. So for Dewie, the “twitches” in her hand began in April of 2007 and she was diagnosed in late October.

Miscellaneous Musings

• All my life I've been called accepting, adaptable and positive, what with my mom changing husbands and me getting step fathers over and over again. It's served me well in this chapter of my journey. I never say, "Why me?" Instead I say, "Why not me?" ...because it seems I have the perfect personality to get ALS. After a day or two of feeling sad with every loss, I end up accepting it. The one loss I do dread is losing the ability to communicate.
• Once I said, "It chaps my butt when I can't share my wisdom." When my friend Cathy heard that, she recommended this blog.
• You can choose happiness. You have that power.
• Always give people a chance. They can surprise you.
• Never say never. I still have a living will that says I don't want extra-ordinary medical interventions like a feeding tube and a ventilator. Now I have both and I'm glad I do!
• And finally "The Life of the Unattended Itch". Since I can't swallow I sometimes drool and I depend on my caregivers to keep my chin dry but sometimes, especially at night when my caregivers are asleep, the saliva stays there for a while. It dries. It itches - a lot - and it causes a piercing pain. Because I can't move I've learned what happens next. The pain eventually goes away! It comforts me that I know this and can count on it. Something I never would have known when I was able-bodied.

Love, Dewie

How to Leave a Comment

More than one of you have emailed to say you don't know how to leave a comment on the blog. Obviously not everyone wants to publish their comments, but here's how in case you do.

1. Look at the end of each blog entry where it says,

POSTED BY DEWIE AT 11:08 PM 6 COMMENTS.

2. Click on the 6 COMMENTS.

3. You can then read any comments that are already posted. Scroll to the bottom of the page.

4. Type your comment into the white box.

5. After typing your comment, click where its says,

Comment as: (Select Profile)

6. If you've never posted a comment before you can select Anonymous. (You can identify yourself in the body of your comment if you choose.) -or- You can select Name/URL. (You only have to type in a name - you can leave the URL box blank - then click on Continue.)

7. You can then select Post Comment and you're done. -or- You can select Preview if you want to preview or edit your comment. If you then see a Word Verification box, type the letters displayed in unusual font into the box and click on Post Comment and you're done.

Hoping this makes reading and posting comments easier,

-Pete

Dewie Stories

Dewie loves to laugh, so we watch a lot of comedy on TV. And she finds humor elsewhere...

Last year I was on a trip and called home from a layover. I got Sarah, who was very excited and told me there was a tornado warning! I could hear a siren in the background and Sarah asked me to call back after she and Mabel had gotten Dewie into the closet. So I hung up and worried for five minutes and called back. Sarah said everyone was OK. They were in the closet and she wanted a flashlight because the power had gone out. I told her where to find a flashlight and in a few seconds she started laughing. I asked what was going on and Sarah said, "Mom's laughing at us. When I turned on the flashlight, there she was just laughing. She thinks Mabel and I are funny with all our commotion."

So Dewie is not a worrier. She leaves that to the rest of us and she picks up our slack in the laughing department.

Dewie loves people. Then she gets tired. From her Mom, she inherited a penchant for brusque good-byes...

We were at the ALS Association support group meeting and it was over. People were lingering and visiting and the new director of the North Texas Chapter came over to say hello to us. She said she had seen us using the "alphabet board" and was intrigued by it. I was eager to show it off and so I picked it up and said we could demonstrate if Dewie wanted to say something, which she indicated that she did. So we spelled out Dewie's message, "L..e..t..s..G..o.", she said. "That's how it works.", I explained as we left the meeting.

Recently, Forrest and Feather were visiting and it was lunch time. Everyone was in the kitchen and I drove Dewie's wheelchair into the kitchen where she could be a part of the commotion. Lots of loud talking. Soon I noticed Mabel had taken Dewie back to the living room, so we all went in and joined her again, talking away. Dewie indicated she wanted to say something, so I picked up the board.

She spelled, "W..h..y..d..o..y..o..u..t..h..i..n..k..I..c..a..m..e..b..a..c..k..i..n..h..e..r..e?" Surprised that our conversation wasn't scintillating, we left her in peace.

I never know what to expect when I pick up the board.

-Pete