VA versus Medicare for PALS - Eligibility

Many PALS have done military service and have Medicare insurance due to age or receive Medicare due to their Social Security Disability Benefits. The purpose of this paper (divided into a few separate posts) is to compare the two programs, Medicare and the VA, with respect to benefits for PALS. Hopefully it will serve as a guide, helping PALS decide which programs are advantageous at each of the succeeding stages of the disease. The information in this paper, especially with regard to benefits, reflects my own experience with the medical treatments and services I have received for my disease.

1. Eligibility

VA:
i) To begin the process at VA, you must go to the Eligibility Office in the main lobby of the local VA Medical Center (which in the DC area is located near Washington Hospital Center and Catholic University.) You must bring with you your military discharge paper (form DD 214) and information on your financial condition such as a net worth statement and tax return, and enough medical records to establish that you have a firm diagnosis of ALS.
ii) The eligibility officer will enter your data into the computer and, as happened to me, tell you that your income makes you ineligible for benefits. Insist that you are eligible because you have a catastrophic disability that puts you in Category 4 and makes you eligible for VA benefits because of your ALS diagnosis. The $35,000 a year income cap does not apply to veterans in Category 4.
iii) The Eligibility Office will then assign you to one of the six primary care sections at the hospital and schedule an appointment with a primary care physician to get the process of providing services and treatment started.

Medicare:
i) In order to be eligible for Medicare benefits, especially if you are under the age of 65 and not able to work, contact your local Social Security Administration office and apply for Social Security Disability Insurance (SSDI). When you are approved for SSDI with a diagnosis of ALS you will also receive Medicare Insurance. As in the case with VA, you must provide sufficient medical records to confirm your diagnosis. As a result of the successful lobbying effort by the ALS Association, you will receive SSDI and Medicare insurance after the SSDI waiting period of 5 months.

Benefits for PALS who are veterans

About a year ago, I learned about programs offered by the VA for PALS who had done active military service. The VA doctor visited the George Washington University ALS Clinic. She was interested in setting up a similar multi-disciplinary clinic at the VA Center in Washington, D.C. I learned from her that, even with as little as two years active duty, I was eligible for some VA benefits that would help me defray the costs of this disease.

The VA offers two programs for PALS vets: the first program provides major medical benefits. The extent to which a veteran can enjoy these benefits depends on whether he or she can prove that ALS is service-connected. The discussion of health benefits which follows covers programs offered by the Washington VA Center and may not apply to all other VA Centers in the country. The second major program provides pension benefits for disabled vets. Again, service connection results in more benefits and the VA goes through a detailed disability assessment to determine the level of pension benefits.

The extent and quality of the VA medical benefits I am receiving from this facility is outstanding. The doctors are excellent and highly knowledgeable. Because my illness is not service-connected, I am not eligible for all the benefits offered; for example, a grant to help cover the cost of a van conversion. I have not applied for a VA disability pension because many other vets have a greater need than I for this support. The local chapter of the ALS Association has worked closely with the DC VA in the cases of PALS veterans. In the area of medical benefits, ALSA has helped to increase VA support. In the pension area, it will take a great deal of time and effort to get the VA to tailor its disability criteria to the vets with our unusual disease. The progression of ALS rapidly reaches the condition of total disability but the military yardstick is more appropriate to vets who have lost a limb. Many PALS with full military careers have found it very difficult to get disability benefits commensurate with their condition. ALSA is putting together a briefing package on VA benefits that I contributed to; it should appear on their national website soon. What follows in the next few posts is a piece which will summarize the medical benefits I am receiving from the DC VA Center relative to those that I am familiar with under Medicare.

More (gasp!) on bowel issues

Thanks for the good responses to my TNT recipe. I know that everybody’s situation down there is different; therefore I do not offer my solutions as a golden rule. As George Bernard Shaw said, “Do not do unto others as you would have them do unto you; their tastes may differ.” The same goes for bowels. I will visit this area again when I do my series on best practices. I know you’ll be waiting with bated breath!

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.

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.

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…

"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.

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.

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.

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.

About Me...in detail.

I am 66 years old. I’m a husband, a father, and a long-time resident of Arlington, Virginia. I was diagnosed with ALS in September 2004 and have come to terms with my situation. I have a power chair, feeding tube and Baclofen implant. I operate my computer by head pointing and am programming a Vanguard communication device, which will speak for me when the time comes.

I’ve had a chance to try many things in my life – Army officer, diplomat, adjunct professor, consultant – in short, I have had a good ride so far. I view ALS as my next career. This disease has led me to meet wonderful, caring people I’d never have met in other circumstances. My heart goes out to people who get this disease early in life. I’ve had many different activities. My sport was golf and I enjoyed it for 50 years, even though I never got good enough to be on TV. My wife and I had many happy days battling on the tennis court. Golf was too static for her. I don’t look backwards with regret on my inability to do what I could do before ALS hit me. I’m not a compiler of life lists of things I never got to do and places I never got to visit. I look back on my life to date and view it as a well-judged race – like a NASCAR race in which you don’t set the speed record, but you don’t crash, handle the curves well, and deliver a respectable performance. Some of you might say that my description sounds like T.S. Eliot’s “measuring a life in coffee spoons.” I may not have experienced great things or accomplished high peaks, but I can look back with satisfaction on a wide variety of wonderful and not-so-wonderful experiences.