Janet has been a friend of Ginny’s since they both worked at the Faulkner Hospital, several years ago. Ginny and I were very moved by the crisis and subsequent and continued healing that Janet and Alan have gone through in the last few years. They have been an inspiration to us as we now face the challenges before us. For many years Alan was a professor physics at Northeastern University. In July 1998, Alan suffered a severe brain injury after a cardiac arrest. He had to regain the ability to talk, walk, read, write and think. Now Parkinson’s Disease complicates his mobility, but not his spirit. Alan says his job now is to stay alive and give other people hope.

Alan loves to listen to and sing songs -especially Broadway hits. Lately he has been reciting in full, the "Yertle Turtle". (Sounds to me like he would make a great Waldorf teacher, with that his memory for song and verse!) For several weeks now Janet has been cooking us delicious dinners and brings them already to eat on Wednesday evenings! (Because of our busy schedules, Gin and I look forward to this first meal together of each workweek.)

Driving around in the dryness of the Southwestern mountains in the old Buick that was loaned to us, it occurred to me that life was a lot easier out West than in the East. Now it certainly helped that we were on vacation and that we left behind us an incredibly busy schedule of appointments, to-do lists, big unanswered questions and challenges. (We found it all waiting for us upon our return without any problem –we didn’t leave it that far behind!) The wide open sky, even the rain clouds off in the distance that never visited us, the people smiling and actually greeting us as we passed by in the streets, the one floor adobe houses and buildings that were pretty much all accessible, and the food –fresh and cheaper than out East –all was easier to navigate. Oh, and speaking of getting around, the traffic was so easy, that I gasped when other drivers had the courtesy to let me in their lane in front of them!... I guess people out there –according to my friend, John- pride themselves on being courteous and don’t let stress affect their attitude towards others. Gee, I guess I have been in Boston a long time, because I wasn’t convinced that such a life-style existed anymore in this country.

It gave us pause to think about quality of life. I think that Gin and I do a pretty good job of appreciating what we have and enjoying the day-to-day life we lead here –even in this state of great challenge (which sometimes borders on crisis). But this was a reminder that various things beyond our control contribute to shape the environment that we live in. We can work with people and situations to try to create the greatest ease (and more importantly, we can look within ourselves), but sometimes a trip away to see how others fare is just what the Doctor ordered (so to speak). And this was the case for me. It was perfectly timed for that. I don’t know if we could have gone on much longer without this break. As I say, maybe we could have found this perspective in other places, but right now I have a great appreciation for the culture of New Mexico (and my friends there), because it gave me renewed faith in finding life’s simple pleasures. Like the joy of sitting down to lunch without hurrying, walking (or wheeling) into a building without climbing steps, making a turn in traffic without worrying that someone would cut me off and basking in the sun or soaking in a hot tub under the cooling stars at night.

In a way it did make returning more difficult. We have so much to do again, so much to deal with and the changes in my body and in our life continue to move at a hectic pace! But the memory of relaxing in the New Mexico sun is still very much with me and helps me to feel calmer. I have been doing breathing exercises from a tape of Dr. Andrew Weil, too, which help to relax me. (Interesting that he teaches and lives in the Southwest, also?!)

There seems to be a time to relax and a time to work hard (for everyone I know). The directive from the Hopi Elders is an interesting message to ponder at this time. One thing that I get from it is that we must harmonize opposing forces of nature in order to reach a balance: to face the difficulty and work hard, yet to accept what is and celebrate it as a part of the path. Transforming the struggle/challenge and to keep forging through is in itself the victory.

 This week I start a treatment of IVIg, which is a gamma globulin IV drip. The first session, later today, will be at MGH for about four-five hours. For the next four days I’ll be able to have it done at home and it should take only two-three hours each time. The hope is that this may unblock any blocks or inflammations in the nerves of my right arm or shoulder which may or may not be causing the numbness in my hand and arm. The treatment is not for any of the ALS symptoms of weakness in my muscles.

 Yesterday, Sue Coakley, David Eggleton and Gin and I went to the New England ALS conference, "Symposium 2002 Living with ALS", held in the area (20 minutes from our house). There were two panels of physicians and health care workers for Q & A. The first focused on research and featured among others, Dr. Brown (my doc!). He was very impressive not only for the amount of knowledge he has at his fingertips, but also for his sense of compassion and for getting at the truth of various issues. The second session focused on practical care and management of living with ALS. Here also, the panel displayed dedication and expertise in working hard to meet the difficult challenges of this disease. Sue asked a very good question about the role of emotional and psychological care for patients with ALS. It was very well articulated and the response from the panel revealed a significant lack of these resources in hospitals or on most ALS "health-care-teams". (For example, they did not include someone on either panel to address these issues.) It highlighted the need for this major issue to be addressed and the organizers did take note. Also, Ginny pointed out that there was a distinct lack of discussion or opportunity to address caregivers’ supports and needs.

It was a very full conference, with hopeful prospects for the future in terms of drug treatment development (some drugs –but with limited success- are available now, but patients must weigh possible side-affects and other considerations.) There also exists for the more distant future real hope for stem-cell therapy.

As I am relatively new to this organization (I attended my first ALS support group earlier in the week) I personally was pleased with the organizational effort. There are a great number of people involved in trying to work toward a cure and toward better management of the disease. Also there is a strong effort to get the word out about ALS so that more of the general public knows what it is and so that we can try to influence governmental legislatures and insurance companies to provide better services. (This is a big problem right now. Often the minimum is not provided for people with very severe disabilities –mostly because the need for treatment and how best to manage the disease goes unrecognized or is not understood by people in those positions.)

There is room for improvement in terms of influencing the medical system to take more notice of the quality of daily life, especially as it relates to the whole person. (This is an issue in any area of modern health-care –the patient must enter-in with the knowledge and readiness to be his/her own advocate! Thanks to some of you, Gin and I have gotten a head start on this.)