[BobbyB]

Navigating Through ALS - A final solution to bowel issues?
Posted Monday December 24, 2007 at 01:05 PM EST
Hi All,

I want to share a recipe that I use to keep my bowels regular.

Check it out here:
http://navigatingthroughals.blogspot.com
http://navigatingthroughals.blogspot.com/

Please share your thoughts on the site about what you have done to cope.

Tony


Monday, December 24, 2007
Tony's TNT - The Recipe
Ingredients
1 cup raisins
1 cup pitted prunes
1 cup figs
1 cup dates
1 cup currants
1 cup prune concentrate (juice)

Combine contents together in food processor or blender to a thickened consistency. Store in the refrigerator between uses.

Administer 2 tablespoons twice a day (morning and evening). May increase or decrease dosage according to frequency of bowel movements.

Nutrition:
2 tablespoons
61 calories
137mg potassium
8 mg sodium
11.9 g sugar
0.5g protein
1.4g fiber

We add more prune juice to thin out the mixture and make it easier on the blender.

This recipe can not be used through a feeding tube. "Don't try this at home"

Source: The Journal of Geriatric Nursing. Volume 28, Number 2 Article titled" "Pilot Study of the feasibility and effectiveness of a natural laxative mixture."

Recently I have needed to supplement the TNT with a dulcolax suppository to get things moving. The TNT works from the top down and the dulcolax from the bottom up. A match made in heaven.

I'm interested in hearing what others have found effective. I'm especially curious to hear from those of you who rely entirely on a feeding tube.

Posted by Tony Wallace at 12:49 PM 0 comments

Labels: Best Practices


Monday, December 17, 2007
The Rocks and Shoals
I would like to share with you some of the ways in which I have dealt with the milestones in this disease. My philosophy was to prepare myself in the best way possible for each succeeding stage. Does this make me a micro-manager? Borderline OCD? Yes I guess so. It’s probably partly genetic and partly because I worked for a guy who didn’t like surprises.

1. Before I fell hard enough to break something, I "graduated" from walking to a walker and then to a wheelchair.
2. Before transfers because difficult and risky I chose to use an Easy Pivot device (http://www.saratoga-intl.com).
3. To avoid the possibility of waiting too long, I got myself a feeding tube.
4. To avoid locked muscles, I had the baclofen pump implanted. My range of motion remains good.
5. In advance of a sharp decline in my breathing function, I got a BIPAP machine and use it at night. I am convinced that it has slowed down the deterioration of my breathing function.
6. Anticipating the decline of my speaking, I first purchased voice-recognition software allowing me to speak to my computer.
7. As the volume of my voice dropped, I got an amplification device, which makes speaking less tiring.
8. To get ready for the time that I would not be able to speak at all, I got a speech communication device that I can operate by headpointing.
9. I moved early to a condom catheter, which removed all of the stress dealing with that bodily function. I also prepared for the loss of bowel muscles by using a wonderful recipe I found online; a natural blend of fruits, which keeps things moving. I call this Tony’s TNT. (I'll post the recipe shortly)
10. To get ready for the point where accummulation of mucus and saliva would result in aspiration, I got a suction machine and a cough assist device.
11. To deal with pseudo bulbar I got a prescription for Zolof. Now I don’t cry at concerts anymore.
12. I enrolled in hospice while my breathing function was still fairly good because I strongly believe that the palliative care services they offer are a great comfort to ALS patients.


I believe that avoiding the rocks and shoals prolong your life expectancy. Do you agree or disagree? I'd like to hear from others.

Posted by Tony Wallace at 4:16 PM 2 comments

Labels: My View of ALS


The Weekend from Hell
I got a D- in navigating this weekend. I’m getting into the bad phase of this disease. My voice is going very fast. My bowels are a mess. I can barely operate the joystick on my chair. On top of all of this frustration my computer crashed as I was trying to set up a video-conference with my grandkids in California. Susan and I ended up suffering a mutual meltdown. In my next post I am going to talk about how good I’ve been at anticipating my needs. This weekend was a blow to my belief that I can navigate through this disease without hitting any rocks. The one high point of the weekend happened when Susan and I went through my email address book and sent off a link to this blog. I got some very nice replies.

So to those of you reading this blog. Have you too failed in navigating on any given day? How have you coped with the issues at hand? We can all learn from each other…

Posted by Tony Wallace at 4:14 PM 0 comments

Labels: Stream of Consciousness


Wednesday, December 12, 2007
"Fighting" ALS
In writings about cancer and many other diseases, there is talk about fighting because fighting is associated with the possibility of recovery (i.e. beating the disease). I think ALS is different. The literature on exercise for ALS patients is divided between those who believe active exercise can prolong life and those who believe that such exercise can accelerate muscle decay. For me the key is conserving strength. I’m not proud, I’m not stubborn, I’m quintessentially pragmatic. For example, I didn’t fight going into a wheelchair, I embraced it. My philosophy is that as PALS we should “navigate” through ALS, avoiding the rocks, shoals, and sandbars that mark our trip. The end point is the same, but getting there in the right way makes quality of life bearable and even extends life expectancy. We should leave fighting to the researchers. The problem is there are only 5,000 new cases every year. Until a marker is found for ALS, the big pharmaceutical companies won’t choose to spend money on treatments.


Posted by Tony Wallace at 3:44 PM 0 comments

Labels: My View of ALS


My View of ALS
All of us in the ALS community are coping with an enormously varied disease. No two cases fall in the same etiology, starting point, sequencing or stages, or rate of progression. The end result seems to be overwhelmingly uniform, i.e., a one way ticket to the happy hunting grounds. There is no cure. The many professionals we consult with can do little more than deal with symptoms that arrive as the disease relentlessly progresses and provide palliative care. What matters most, therefore, is the process of moving through this strange disease. There are lots of disguised “ blessings” stemming from ALS that make this disease unique. We generally retain all of our senses and our mental acuity, which means that our ability to experience the outside world is much more viable compared to those suffering from many other terminal diseases. We have time to put our affairs in order, repair damaged relationships and enjoy long goodbyes to loved ones and friends. We can still enjoy great literature, beautiful music, good food (at least for a while), and conversation. We can, with the assistance of amazing technologies, move about, use our computers, and enjoy relationships with loved ones and friends. The downside of these “blessings” is that we get to witness and experience in full technicolor and 3-D the gradual disintegration of all activities related to our voluntary motions. At some point, many of us will end up “locked in” and totally unable to communicate with the world.

Posted by Tony Wallace at 3:31 PM 2 comments

Labels: My View of ALS


Thursday, December 6, 2007
Appreciation
I am lucky to be surrounded by a large group of loving, caring people who are helping me navigate. I feel like the guy in the Verizon ads who has a network following him. First of all is my wife, Susan, who has had to mentally deal with the fact that I have a terminal disease. Susan keeps the house running and has mastered many care-giving techniques. She has truly been a marvel. My brother Peter and sisters Penny and Mary have given me great support. My daughter Andrea who lives in CA is a wonderful, caring person. She and I regularly video-conference which allows me to keep up with my grandchildren. My sons Robert and Peter are nearby and help reduce Susan’s burden. I was fortunate to have two incredibly good doctors at GWU who lead me through the long process of diagnosis. Dr. Perry Richardson was a master at EMG analysis, and Raul Mandler, refused to believe that I had ALS, taking me through an incredible series of tests. At the VA, where I received most of my care, Dr. Elizabeth Lindenberger, Dr. Marshall Balish, and all of the professionals who treated me at the ALS clinic were very impressive. I was also very lucky after looking for a long time to find Matilda Bonsu who keeps my act together every day and gives Susan a chance to get out of the house. Also on my list are the people from Hospice, led by Dr. Hank Willner, RN Carol Stewart, nursing aid Gifty Suka, volunteer Ellen Maland and PT Lynn Tidwell. I’m also indebted to Dr. Zachary Simmons who gave me ideas on how to use the questionnaires I have developed. I have an amazing number of regular visitors who help fill my days. Many of these wonderful people are acquaintances of people I had never known before. I was surprised to find that neighbors and good friends somehow turned away, perhaps because they didn’t know how to deal with my condition. Among my favorite regular visitors are Ron Silberman, Alan Parker, Ellen Maland (a hospice volunteer who helped me organize my stamp collection) and Meghan Baivier (who is at the helm of the computer writing this). Thanks also to nursing technician Deneen Palmer whose vast experience in ALS care made my questionnaires more complete and useful.

Posted by Tony Wallace at 3:59 PM 0 comments

Labels: Appreciation


About This Site
I like causes. I’m an ALS junkie. I have been heavily involved with the ALS Assn., doing advocacy in my state capital and in Washington, D.C. and publishing documents for the Association and for the ALS community. I have a blog on the ALS Assn. Website and I’m active in the Yahoo Living with ALS group. Through Yahoo I became familiar with Randy Roberts’ Guidebook. In his guidebook, Randy did a wonderful job introducing ALS to recently diagnosed PALS, their families and caregivers. You can download Randy’s 100-page manual at http://55jer.com/randysalsmanual.htm. Randy’s marvelous gift to the ALS community inspired me to create this website and blog which I hope will complement his work. What I want to do here is address issues faced by mid-term and late-term PALS. I’ve already done a couple of pieces on the impressive support provided by the Veterans Administration to veterans with ALS. They will be included in this blog. I have also designed a series of questionnaires dealing with perhaps the most important decisions PALS and their families face as they navigate through this disease, that is, whether and when to move to invasive ventilation. I have shared these questionnaires with physicians, caregivers, researchers and Association personnel. The questionnaires are wide-ranging and general and therefore serve only as a catalyst for more detailed research. Everything on my blog will be in the public domain and I encourage readers to use any part of the blog as they wish. I’m also hoping that the discusion strings that result from the blog will be extensive and rich and like Randy, I will work them and raise all the latest subjects, which might be added to the blog with attribution.
I would like this blog to be a vehicle to help the ALS community navigate through this disease. The blog will have chapters on the various milestones. I also plan to include a brief review of the literature on the question of moving to the vent. In my blog I am including a list of factors that PALS, family, caregivers might want to consider as they decide whether to resort to invasive ventilation. A lot depends on what stage of the disease you are in when it comes time to decide about the vent. I have been in touch with a wide variety of vent patients, some who have great quality of life and others who’ve had an unhappy experience. My questionnaire raises sensitive questions and some of you may consider them “edgy.” But I think it’s important to consider all aspects of this decision.