NAVIGATING THROUGH ALS

An Economist's Lament

2008-03-18T13:04:00.001-04:00

I hope my thoughts on economic issues will resonate with those of you who are either economists or people not turned off by the dismal science. I am not going to rant, I am not going to throw mud at any particular schools of thought. President Truman had an interesting point of view about economists: he said, “Please find me a one-armed economist. I’m sick of hearing from my staff ‘On the one hand this, on the other hand that.’”

We economists all have a list of pet peeves and we hope to write a journal article or a book about these issues, but we tend to leave the work for later. For economist PALS, later might become rather a short period. The great Doctor Samuel Johnson famously said nothing concentrates the mind more than the prospect of hanging in the morning. ALS has concentrated my mind and galvanized me into focusing on at least a few of my pet peeves:

Cost-benefit analysis
Regulation theory and policy
The fiscal policy shell game (i.e “deficits don’t matter”)
Hedge fund managers who avoid taxes
Tax cuts for the rich
Economics of ethanol
Relentless rampant privatization of government functions
The fox in the chicken coop (EPA, OMB JUSTICE INTERIOR) and many others
Supply side economics
Self-regulation
Voluntary emissions reduction
Tax cuts for the rich
Folks who advocate defunding of most federal social programs
The Wall street casino and the risk management oxymoron
The glorification of quantification

One important public debate that draws on many of these peeves of mine is the food fight over global warming. The overwhelming majority of technical people accept the science, which says we humans are messing with the atmosphere. We have a serious problem b/c the level of greenhouse gases is starting to inflict real damage. We cannot reduce the amount of CO2 that’s up there already. It lasts for hundreds of years. Therefore all we can realistically expect to accomplish is the slowdown the rate of accumulation of additional greenhouse gases. Even the somewhat draconian Kyoto plan will be a drop in the bucket. The failure of China and India to sign on to Kyoto dooms any prospect of seriously capping greenhouse gas production. The gas that China and India are putting into the air in increasing quantities will eventually spread around the globe, so they and the US really need to join the effort. India and China say that we are denying them the right to have their own industrial revolution.

Before we think about means to reduce production of greenhouse gases, we need to know a lot more about the present and future costs of the phenomena that we are observing: dying polar bears, wild weather, shifting temperature zones, melting icebergs and glaciers, etc. We also need to have a better idea of the present and future costs of doing anything to remediate the effects from warming. Until we can do an honest cost-benefit analysis (CBA) of any remediation project, we need to answer those questions.

Unfortunately it is very easy to make a CBA come out the way we want it to by leaving out important elements or incorrectly estimating costs and benefits. Sometimes it only takes a small change in an assumption to change the direction of the conclusion. On a large project such as a dam or river-diverting exercise, the people who want the project to go through may overestimate the benefits and underestimate the costs.

Environmentalists opposing the project may do the opposite. And whenever it gets to the point of getting an honest CBA about global warming, we will not be able to go from a simple decision tree analysis to determine what we need to do and when and how to do it. We also have to think about the inter-generational aspects of our policies. If we do nothing today we may be handing future generations a terrible legacy. On the other hand, if we invest billions today for the future scenario that is not as devastating as some expect we have wasted today’s resources.and increased the debt burden on our children.

To start the decision tree we have to decide whether or not we accept the science . There are still a few flat-earth types in high places who aren’t on board. I think we can safely start on a journey without them. The next step, assuming we have come up with an honest CBA of a project to deal with warming, is to.run it through a series of expertly designed scenarios.

To be continued

Spasms and spasticity

2008-03-18T12:55:00.000-04:00

Spasm and cramps often begin early in the progression of symptoms. Simple things like tonic water (gin is optional) can help but most PALS have to move to muscle relaxants such as Baclofen. I opted for a Baclofen implant which pumps the Baclofen into my spinal fluid. It was placed under my skin during a simple surgical procedure. It is about the size of a hockey puck. A catheter connects the implant to the spinal fluid, so the medicine bypasses vital organs and goes directly to where it is most needed. I have no discomfort from the device. The medicine gets topped off every six months. The doctor can change the rate of dosage by sending signals from his palm pilot to the computer in my implant. It works very well for me. I am loose as a goose.

I wear hand splints to keep my fingers from curling up and becoming locked. I wear heel boots to deal with toe drop and my twisted ankles. Massage gives short-term relief to spasms.

How are others coping? I hear that pills can have unpleasant side effects. Any experiences with this?

Sex for PALS

2008-03-18T12:44:00.000-04:00

It appears that sexual function, at least for males, does not involve voluntary muscles. Lack of motor neurons is not correlated with impotence. Antidepressants, however, can “curb your enthusiasm” (love that show!) This blog is not going to offer a manual on techniques (a la “Helga and Bernd demonstrate 100 sex positions” or “The Joy of Sex”). I’m not compiling a list of best practices or offering Dear Abby or Dr. Phil-type advice. If you want more discussion on this, go to the yahoo group site (Living with ALS). All I will say is that the essential elements are present – the problem is the physics of getting to an end result. Where there’s a will, there’s a way. Rock on!

Transfer devices

2008-03-10T17:00:00.000-04:00

The nature of transfers changes radically during the progression of ALS. Transfers can cause a lot of stress for patients and caregivers when they go awry. When manual transfers become impossible, there are devices which can deal with PALS up to and including quadriplegics. I chose the “easy pivot” device at first. I have now switched to using a hoyer lift. I made the transition for a number of reasons. First, the physical therapist observed me in a transfer and said that the easy pivot was no longer appropriate because the loss of muscles in my back made it much harder for the caregiver to get me into it because I was unable to assist her. The caregiver had to pull on my arms to get me into position, and that was dangerous for me because this can lead to painful dislocation of the shoulder. It was also dangerous for the caregiver, who began to have shoulder pains.

I’ve been using the hoyer lift now for a month and it is working out well. It is not as scary as it looks in the film clip provided by the easy pivot people. Advantages: it is easier for the caregiver to use, CNAs are more likely to know how to use a hoyer lift than an easy pivot so less training is needed, it is easy to position me on the commode or in my wheelchair, repositioning is much easier, and it makes it possible to get someone up from the floor. I keep the sling under me all day, so the caregiver just has to put the loops on the hoyer lift and I’m ready to go. My lift is hydraulic rather than battery operated, and that works for me (I weigh about 170). I would recommend getting an alternate sling so one can be washed while the other is being used.

My hoyer lift was provided by hospice. I suspect that Medicare would pay for most of the cost of one.

What works for you?

Communication Devices

2008-02-27T18:51:00.000-05:00

I knew what was coming in this area and I did a lot of research on communication devices. The ALSA assistive technology person was very helpful. Working with the VA, where I got my medical care, I had the opportunity to try out various devices. The one I liked the most was the Vanguard Vantage System (http://www.aroga.com/Com_Aids/ca_products_detail.asp?Item%20ID=2101). It gives you the choice of both a picture-based overlay and a word-based overlay. I found the picture overlay to be counterintuitive. I am told it is better for children. They are wired differently than us senior citizens. I used the WordCore overlay but I found it was quite difficult to program. Once the data was in the machine, though, it worked very well.

I was lucky to have my device provided by the VA. Does anyone know if Medicare covers this machine?

Has anyone else researched or does anyone currently use this machine? Any other devices with which you have had success?

Pix from October 2007 Walk to D'Feet ALS

2008-02-22T15:07:00.003-05:00

This is my team (Tony's Trotters) at the 2007 DC Walk to D'Feet ALS. We had 50 members. Over the last three years we have raised $30,000.

This is my golf team buddy, Dahn Linkins, and his family. They have walked all three years.
This Ellen Cochrane and Hank Willner. Ellen runs the support groups and patient services at our local ALSA chapter. Hank is my hospice doctor. He has made ALS his "hobby." He is a fine golfer and we have a great time when he comes over.

8 Things I Would Rant About if I Had the Time

2008-02-22T15:03:00.002-05:00

In 1961 Newton Minnow, head of the FCC, described television as a "vast wasteland." In a recent book, someone said something very similar about the internet. Major contributors to the terabytes of stuff include blogs, videos and spam. The first category of blogs is personal on which we are forced to read about what someone has for breakfast every day. The second category is the blogs that pass on jokes or links to feel-good sites. Another category fills the scene with pictures and videos ranging from the blatantly X-rated to the slightly cloying pictures of animals. Many blogs are socially redeemable. They are issue-specific and often include helpful information (hopefully like my blog) or express views that may be in the form of bleats, venting, rants, philippics, and even jeremiads. You may have thought from the title of this posting that I’m about to go on a rant, but you would be wrong. I don’t have the time to tell you about all of my pet peeves; I’m not going to be an Andy Rooney. Rants often provoke scathing replies and can trigger instant defamation of character, which can only be erased by hiring a special consultant. I am providing a Letterman-like laundry list of things that bother me. You can probably tell where I stand on these issues; however, by not expanding on any of them I hope I will be able to escape instant defamation of character.

Speed humps
Reality shows
Fearmongering
Traffic Calming devices

and finally the 4 greatest cons ever pulled on Americans:
SUVs
McMansions
Ethanol
Bottled Water

Feeding tube

2008-02-18T16:04:00.000-05:00

I opted for a feeding tube well before I needed it. The interventional radiology approach seems to be preferable to the older PEG procedure. It was a simple outpatient procedure that worked well for me. I have heard horror stories about PEGs that ended up in the wrong places (e.g. the small intestine). I was told that I had to have the procedure done before my lung function dropped to 50% forced vital capacity (FVC). I’ve had the tube almost 2 years and am still eating soft foods. The tube is a great help in hydration. I also take some of my meds through the tube. It is important if you don’t use the tube regularly to flush it daily with a syringe. It’s important to flush it with water after each use. I have gotten conflicting advice about the frequency of changing the tube; some say every 6 months, others say whenever it malfunctions. I’ve had it changed 2 times in almost 2 years. The first time because the inflatable bulb inside burst.

I started out with what is called a G-J tube, as recommended by my gastroenterologist. He was concerned that later in the disease I might have acid reflux which could lead to aspiration. When they do the procedure they insert both G and J tubes in the stomach, then feed the J tube down into the jejunum. I haven’t had much acid reflux so with the last replacement I opted to have just a G tube. I’d love to hear from others about their experience with the J tube. I heard from one MD that it takes longer to feed through the J tube because the jejunum is smaller than the stomach. I was also told that an RN could do the replacement of a G tube. I’m glad I had my replacement done in the hospital because there were complications.

As I proceed through the list of things that I can no longer eat by mouth (peanuts, dry cereal, steak), I have surprisingly few regrets. I love good wine and a cold beer and still drink them. I will miss them greatly when I can no longer drink them orally, but I can put them through the tube…it’s a shame my stomach doesn’t have taste buds!

As always I’m interested in others sharing stories with best practices!

Hospice for PALS

2008-02-13T17:45:00.002-05:00

I enrolled in hospice in March 2007 even though 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. People make a big mistake by viewing hospice as reserved for people in their last few months of life. The word hospice is highly emotive in our culture along with expressions like “dead man walking.” As a result, people often wait too long before enrolling. I think that’s a mistake.

Our local hospice provides a weekly visit from an RN; 3x weekly visits by a CNA who helps with my bathing; a monthly visit from a MD, PT, and social worker; and an occasionally visit from a chaplain. Hospice provides such supplies as bandages, enemas, chuks (paper sheets to sit on), some meds and equipment (hoyer lift, hospital bed, etc). Our hospice offers a 24-hr emergency number to call; it is staffed by an RN who can walk you through any situations that may arise after business hours. That's a great comfort for my wife. And Medicare covers hospice expenses, so we have no copay. The people have been absolutely wonderful and they are an important part of my support team. The last time the MD visited I noted that I had been with hospice for more than 6 months. I asked him how much “overtime” I would be allowed; he said I could be in hospice as long as I’d like to. Most people think of hospice as something for the last 6-12 months of life, but no one knows how long they have and, as long as your condition deteriorates, you continue to be eligible. PALS don’t always deteriorate at the same rate, but we all know that this is not a disease that you recover from.

My personal “commandments” of navigation.

2008-02-03T13:43:00.001-05:00

Remember I am not "fighting" this disease. I am trying to outwit it, gaining precious days and weeks of life by anticipating my needs. I think everybody in the ALS community will agree that there are a few "commandments" that we all should follow.

-Keep up your body weight – move to feeding tube to avoid choking and chewing

-Preserve your breathing muscles by starting early with bipap & sleeping at 30-degree angle

-Continue range of motion exercises religiously to avoid freezing up.

-Maintain excellent skin care to avoid pressure sores

-Avoid hospitals at all cost – protect against falling, UTIs, colds, pneumonia

-Be nice to your caregivers

-Communicate what you want while you can

-Include frequent bursts of hearty laughter

-Avoid filling your days with relentless work projects – add a mid-afternoon nap to restore energy and reduce stress
Follow these commandments and, in the words of the immortal Adrian Monk “you’ll thank me later.”

The Impact of Ventilation on Caregivers and Family

2008-01-30T17:27:00.000-05:00

The wonderful people who meet our rapidly expanding needs are really the backbone of the ALS community. They have to perform all of the household chores that we PALS used to do. They take care of us and have to fight for time to do their own chores. Given their place in our lives, I think it's important to consider their views on this decision. Below is what I've formulated for CALS. As always I welcome outside input.

Questionnaire for spouses/caregivers

1. What is your age and the age of the person with ALS?
2. How long has the care receiver had ALS? What is the disease stage?
3. Do you have young children? Adult children?
4. What type of insurance coverage do you have?
5. What factors are important to your quality of life?
6. Has the care receiver made a decision about LTMV? If so, do you agree with the
decision? What were the most important factors in the care receivers’ decision about LTMV?
7. Do you currently have some home health care services? If yes, how frequently? Is the care skilled or unskilled?
8. What has been your experience with the homecare provider or agency?
9. Do you have any medical problems?
10. If the care receiver is on LTMV, at what point will the vent be turned off? Have you
and the care receiver discussed how the patient can communicate his or her wishes in the later stages of the disease?
11. Do you feel overwhelmed by your caregiving duties?
Have you taken a respite break? Do you have plans to take one?
What activities do you use to help you cope (exercise, meditation, spending time with friends outside the home)?
12. Do you go to ALS support group meetings? If so, are they helpful?
13. Do you have support from friends, family, church, social groups, etc.?
14. Has the ALS Association and/or Muscular Dystrophy Association been helpful? How, specifically?

Those who have not chosen the ventilator

2008-01-29T15:35:00.000-05:00

Here is my questionnaire for PALS who opted against LTMV. As you can see it's not as long as the prior two questionnaires. I welcome your input as these are in some sense works in progress.

For those patients who decided not to go on LTMV

1. What stage are you in the disease?

2. What was the primary factor in your decision against the use of LTMV?

1 Cost

2 Quality of life issues

3 Availability of qualified healthcare providers

4 Research data, case studies, or talking with other ALS patients

5 Physician advice

3. What other factors influenced your decision?

4. Does your spouse or caregiver agree with your decision?

5. Do you regret the decision you made?

Those who chose the ventilator

2008-01-25T16:50:00.000-05:00

One of the physicians I consulted in preparing these questionnaires thought they would be the basis of a very useful study. Understanding the decisions of PALS on both sides of the issue would certainly be important for such a study. Here I have developed a questionnaire for those who positively decided to go on a vent. If you are a PALS to whom this questionnaire applies I would especially like to hear from you on your thoughts about life on LTMV. The next post will address those who opted against LTMV.

For those on the ventilator or have decided to go on it:
1. How long have you been on LTMV?
2. Was this your decision , made in advance, or was the decision made by a doctor or medical professional during a medical emergency?
3. What is it like to be on a vent?
4. Have you chosen invasive ventilation in the hopes that a cure will be discovered
for ALS?
5. Does your spouse or caregiver support your decision?
6. How did/will you set up your team of skilled and unskilled home healthcare providers?
-What was it like to get your homecare providers to learn your particular care regimen?
-How did/will you finance your home healthcare?
-How did/will private insurance-long term care help?
-Did limited financial resources force you to accept a lower standard of care?
-Is hospice a part of your healthcare provider team?
-What was the most difficult procedure, treatment, etc. for your spouse/caregiver to master?
-What was the most difficult procedure, treatment, etc. for your skilled and unskilled home healthcare providers to master?
7. Have you had any serious illnesses or hospitalizations since you have been on the vent?
8. How has your being on the ventilator affected your spouse/caregiver?
9. What additional burdens can the patient and spouse/caregiver expect to have as a result of being on a vent?
-Cost
-Quality of life issues
-Decision of patient and/or family to turn off the vent
-Availability of qualified healthcare providers
10. Have you and/or your spouse/caregiver thought about turning off the ventilator?
11. What circumstances or situation might lead to the thought of turning off the ventilator?
12. What changes have occurred in your activities of daily living?
13. Would you make the same decision again if you could do it over?
14. Please list other factors that were important in your decision.
15. What are some of the issues other patients and family members should consider in deciding whether or not to go on the LTMV?

Factors to consider in making the vent decision

2008-01-16T14:58:00.000-05:00

The decision about whether or not to go on long term mechanical ventilation (LTMV) is one that I have been thinking a great deal about as I enter my third year with ALS. The decision about whether or not to undergo a tracheostomy and go on invasive ventilation is probably the most important decision an ALS patient will make. Moving to LTMV can add years to a patient's life. The decision not to accept LTMV for a patient with lung function below 50% yields a much shorter life expectancy.

I have read articles and talked with family members, healthcare and social service professionals about the factors patients and family members should consider in reaching a decision. I have also spoken to other ALS patients about the decisions they have or would make, the factors they considered and the costs, benefits and burdens of mechanical ventilation.

Recent research shows that at any given time, about 5-8% of ALS patients in the US are utilizing LTMV. Studies show that more than half were placed on a ventilator without prior informed consent. This generally happened when the patient was hospitalized for an emergency procedure during which intubation was performed.

Studies performed in other countries concerning adoption of LTMV suggest that cultural values may play an important role in reaching a decision. Some of the factors that affect this decision include the role of the various players (patients, family members and physicians) in making the decision and the availability of a national health program private and/or long- term care insurance that covers home ventilation. A Japanese study showed that 45% of ALS patients opted for the ventilator, because national health care programs covered costs. In the U.K. however, studies showed that virtually no ALS patients opted for LTMV prior national health insurance covering home ventilation.

It occurs to me that the decision-making process that I have been through might be of use to others with ALS who will face the same situation. Therefore, I have worked with Deneen Palmer, a home healthcare provider with years of experience working with ALS patients, to review the literature on decision making about mechanical ventilation. We have drawn on important medical journal articles to answer our research questions and have developed questionnaires for patients, family members, and professionals. At the heart of these questionnaires is a list of factors that I believe can be helpful to PALS making this momentous decision. I offer this to the ALS community b/c I think it is very important in assessing the pros and cons of moving to the vent. I would love to hear from the community about my choices and I welcome comments and suggestions of additional factors.

Before getting right to the list of factors, I offer this list of generic questions designed to elicit information about PALS. The questions may be used to sort out the population of PALS prior to use of a research questionnaire. They cover a description of the current state of the disease, attitudes and support levels of a PALS. The early questions deal with demographics and diagnosis details. The latter address quality of life and attitude. The "edgier" questions are at the end of the list b/c researchers tell me that if you put them up front people might not want to finish a questionnaire.
My intent is not to collect data from the questionnaires but just to provide ideas and a starting point for a specific research project or further discussion of PALS-specific topics.
Comments and additions welcome.

Questionnaire for all ALS patients
1. What stage are you in the disease?(add scale)
2. How many years since your diagnosis?
3. How old are you?
4. Do you have children? If yes, what are their ages?
5. What is your marital status?
6. Do you live alone?
7. What kind of insurance coverage do you have?
8. What do you consider as good quality of life for you?
9. What was the most difficult transition for you (i.e., transition to wheelchair, feeding tube, etc.)?
10. Do you attend any type of support group meetings(ALS Association, MDA, other)? Are they helpful?
11. Has the ALS Association, Muscular Dystrophy Association or any other social service and/or health care organization assisted you in dealing with the disease? How?
12. How do your religious beliefs help you cope with the disease and does religion have any bearing on your decision for or against invasive ventilation?
13. Where do you stand in your attitude toward your ALS diagnosis? (please select one of the choices listed below)
Denial
Bargaining
Anger
Depression
Acceptance
14. Have you ever contemplated suicide?

Factor Introduction and Questionnaire for those who are undecided.

Here they are. It might be helpful to read this list keeping in mind a scale of importance i.e:
A- very important
B-somewhat important
C-of minor importance
D-not important:

Someone may want to do a survey like this in the future but it won’t be me.

1. Concern about negative aspects of life on the ventilator
2. Making the decision to turn off the ventilator
3. Being unable to communicate (being “locked in”)
4. Desire to extend my life expectancy
5. Concern about the burden or additional burden on spouse, caregiver and/or family members.
6. Concern about the additional cost of home healthcare provided by nursing assistants or nurses and other professional and non-professional homecare providers.
7. Desire to witness the growth of children, or other important milestones such as graduation, wedding of an adult child.
8. Desire to stay alive to provide financial support for my family
9. The availability or lack of long-term care or private insurance

In addition to an analysis of these factors, I suggest those who are undecided ask themselves the following questions:

10. To what extent have you discussed this decision about LTMV with your spouse, family, friends, physician, members of healthcare provider team?
11. What are your spouse’s or caregivers’ feelings about the LTMV decision?
12. When do you plan on making the decision about whether or not to use LTMV?

Pets for PALS

2008-01-13T14:14:00.000-05:00

Have you noticed that almost every edition of the NBC evening news has a “creature feature”? So why shouldn’t this blog have a creature feature also? Susan and I have a thing for orange tabbies. Tigger (pictured here) is our fourth. He is an 18-pound alpha male with a highly complex personality. I have always believed that somehow animals know when you’re sick and take steps to offer sympathy, consolation, and closeness. Tigger seems to think that it’s his job to defend me from all forces of darkness, including caregivers. He sits with me in my chair by day and sleeps with me by night with his front paw draped protectively over my leg. He gives me great comfort. I welcome interesting creature features from others in the ALS community.

The DNR Dilemna

2008-01-11T16:34:00.000-05:00

Many of us, in putting our personal affairs in order after diagnosis, establish a living will and advance directives covering procedures that we may be confronted with. The Do Not Resuscitate (DNR) statement dictates what lifesaving measures may or may not be taken in an ambulance and/or hospital. Most PALS end up choosing not to undergo long-term mechanical ventilation (vent with tracheostomy). Every state has a different approach and language in the form that all of us should have displayed in our house describing our preferences. There is a high variability in the description of the various resuscitation measures (defibrillation, intubation, etc.). In Virginia, the form does not make a distinction between various types of resuscitation. The Catch-22 for me is that the way my DNR is written, I have to rule out all forms of resuscitation; this means that if I had a heart attack, the EMTs would not be allowed to defibrillate. If I opt for resuscitation, they can do any procedure they want. Research shows that about 5 % of PALS end up trached and attached toa vent; half of that group got their vents, without prior informed consent, when they went to the hospital for a serious medical condition.

I would very much like to hear from other PALS about whether or not they are aware of this dilemma. My hospice doctor tells me that the only way to avoid my dilemma is to not get in the ambulance or go to the hospital. Heart attack victims, for example, often get intubation as well as defibrillation.

MDA vs. ALSA

2008-01-08T23:48:00.000-05:00

I joined ALSA after my diagnosis in September 2004 and benefited from their publications, loan closet, support groups, seminars, funding for research, etc. Recently I also joined the ALS division of MDA (Muscular Dystrophy Association). Both organizations do outstanding work in support of the ALS community. MDA, the older group, reaches millions for research and provides an excellent range of publications. ALSA is particularly good in raising funds through their annual walks in cities all over the U.S. Both groups are dedicated to finding a cure for ALS and for providing the latest information to the community. I sense, however, that the two organizations seem to treat the other as a rival rather than a partner. Without naming names, I have noted that when one of the two groups hosts an important event, such as a research seminar, no attempt is made to circulate the news of that event to the other organization. One of the two organizations, in its briefing materials, did not include the other group as a local resource in the D.C. area. I am saddened by this and I can only reiterate the feelings of the boy who famously asked, “Say it ain’t so, Joe.”
Comments are welcome.

VA versus Medicare - Vans and Respiratory Assistance

2008-01-06T23:21:00.000-05:00

7. Converted Minivans

VA
i) The VA offers a grant to PALS whose disability has been determined by the VA to be service-connected. The grant will help defray conversion expenditures, which can be very high ($15,000 and up). The veteran must bear the cost of the van itself.

Medicare
i) Medicare offers no assistance for a van purchase or conversion. IRS Itemized deduction may be possible.

8. Hospitalization

The VA charges a co-pay for hospital room and surgical charges, which in my case was covered by my secondary insurer. I believe that Medicare benefits are similar.

9. Respiratory Function

At the VA, neurologists or pulmonologists assigned to your case may prescribe an overnight sleep study at the hospital to measure oxygen in the blood and whether you can benefit from reduced strain on the muscles used in breathing. The hospital also performs various other pulmonary tests (fvc, nif). The VA will provide a BiPap machine when your forced vital capacity (FVC) is above 50%. It is my understanding the Medicare will provide a BiPap machine only after your FVC is below 50%. My machine was provided at no cost by the VA, and I received detailed instructions on how to use it.

Outside Input on VA benefits for home care and medications

2008-01-06T23:14:00.000-05:00

I received this personal experience comment from Lee Kramer. He has also posted it on the Yahoo Living with ALS group and on ALSA's advocacy site. It seems he has had a slightly different and in some ways more successful time with the VA.

His comment:
"You must request the home visit or no visit
happens. Monthly visits are still a dream but if you make enough noise it
can happen but there is a time limit and once that limit is reached you must
be recertified for more. Your GP is the one who authorizes med. Renewals,
except for ALS directed meds, Rilutek Lexapro etc., are refilled by your
neurologist. If you are 100% disabled there is no charge. Home health care
for vets with ALS has been fought by me so they supply me with 42 hrs a week
for a CNA
only. VA regulations state; “If one Veteran is supplied a specific service
or benefit, they MUST offer the same service or benefit to ALL veterans”.
If you can find a home health care agency that has a VA contract your
waiting is cut to weeks. Mine took 3 weeks from request to first visit. I
did have to write the VA Director in D.C. to get the fire started. The more
noise the vet makes the better the benefits adjust to their needs."

VA versus Medicare - power chairs and orthotic devices

2008-01-04T14:03:00.000-05:00

5. Power Chair

VA
i) The assigned VA neurologist arranges an appointment at a wheelchair clinic held at the VA center. At the clinic, an occupational therapist (OT) measures the patient for a chair and discusses with a representative of the prosthetics department the features that should be included in the chair, such as tilt and recline features. Within about 30 days, the VA delivers a new chair to the patient and provides information on its use. There is no charge to the patient for the chair, and the VA will provide an additional chair as needed. It also provides adaptive devices required as the patient becomes less capable of operating the chair, including caregiver controls.

Medicare
i) Under Medicare, PALS must locate a contractor who generally helps with Medicare processing. Medicare will provide only 1 wheelchair per patient, you have a co-pay, and Medicare does not cover devices that allow the caregiver to operate the chair.

6. Orthotic Devices

VA
i) Under the VA, orthotic devices such as hand splints and ankle-foot orthoses (AFOs) are provided at no charge and can be custom fitted by VA contractors who measure you in the VA medical center.

Medicare
i) Under Medicare, the patient must visit a specialist for a prescription, find a provider who can supply the orthoses, and pay a copay.

VA versus Medicare - Home Care and Specialists

2008-01-01T23:56:00.000-05:00

3. Home-based Care

VA
i) After your appointment with the primary care doctor, the VA will schedule a home visit from a nurse practitioner and a social worker. The nurse practitioner will visit monthly, checking vital signs, renewing prescriptions and adding new medications, if necessary. There is a modest charge for these visits ($15), with an annual cap of $150. The VA offers up to six months of visits by a home care worker for up to 10 hours each week. The problem is that there is a very long waitlist for this service (a year or more, we were told). Patients are not eligible for the VA home-based care program if they are already enrolled in a hospice program.

Medicare
i) It is my understanding that Medicare does not provide in-home care unless your physician orders it for a skilled need (usually PT, RN or SLP). Medicare does not cover custodial care (help with activities of daily living) unless you also have a skilled need. Coverage of custodial and skilled care is very limited.

4. Specialists (neurologists, speech therapists, occupational and physical therapists, pulmonologists, etc.)

VA
i) In the Washington, DC area, the VA hospital provides a one-stop shop. That is, all of the medical personnel who treat PALS are located in one place. After meeting with a new primary care doctor, you are assigned to a neurologist who will give you a comprehensive examination, write prescriptions for medications and medical devices, and refer you to other specialists in the hospital. The Washington, DC VA center has recently established its own ALS Clinic to provide comprehensive, interdisciplinary care for PALS.

Medicare
i) Under Medicare, a one-stop shop option may be available but is not as seamless. PALS can enroll in an ALS clinic such as the one at George Washington University and see a number of practitioners every three months for a half day session. If the patient has both Medicare Parts A and B coverage and the facility is an approved provider under the patient's healthcare program, the medical expenses should be very low. VA would be preferable, however, because there are no billing issues or medical need issues connected with the care that is provided.

VA versus Medicare for PALS - Medications

2008-01-01T00:30:00.000-05:00

2. Medications

VA
i) For the appointment with the primary care physician, you should bring along a list of all your medications. The doctor will then arrange for you to obtain these medications from the VA. For most medications the charge is $8 for a month’s supply of each medication, including Rilutek and a wide range of other medications. In some cases, the VA will only have one of a particular type of medication on its formulary; for example, it supplies Claritin rather than Zyrtec. Prescriptions can be refilled by telephone, and they usually reach you within 10 days.

Medicare
i) Medicare offers assistance in reducing the cost of medicines through the Medicare Part D program for beneficiaries. Since the monthly cost of Rilutek is about $800, Medicare benefits are much more costly than VA benefits for medicines. PALS would find themselves in the famous “doughnut hole” about halfway through each year. It may be more cost-effective to obtain medicines through your traditional health insurance, but in my case VA medicines were by far the least expensive.

VA versus Medicare for PALS - Eligibility

2007-12-30T18:39:00.000-05:00

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

2007-12-30T17:54:00.001-05:00

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

2007-12-30T17:51:00.000-05:00

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

2007-12-24T12:49:00.000-05:00

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

2007-12-17T16:16:00.000-05:00

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

2007-12-17T16:14:00.000-05:00

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

2007-12-12T15:44:00.000-05:00

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

2007-12-12T15:31:00.000-05:00

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

2007-12-06T15:59:00.000-05:00

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

2007-12-06T15:53:00.000-05:00

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.

2007-12-06T15:42:00.000-05:00

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.