Not Dead Yet

Last time I saw my neurologist, he suggested I try Tysabri. I have been using Avonex for about 10 years. Both are "disease-modifying drugs" for MS.

I chose Avonex because it is a once-per-week injection. The day after my injection, I always have flu-like symptoms: I feel tired and weak, like I'm under water. There are other medications that require more frequent injections. Doing the shot more frequently (and perhaps feeling crummy more frequently) has never had a strong appeal for me, even though some doctors think Avonex is not the most effective drug.

All the disease modifying drugs have the promise of delaying the disabling effects of MS. This has always seemed to me way too easy for the pharmaceutical companies: "Take this drug. If you don't feel any different, it's doing its job." The drugs were invented after I was already living with significant disability, but as the doctor who first precribed Avonex said, "Things could always get worse."

Tysabri is slightly different. The glossy packet of information my doctor gave me does show in colorful graphs, how it is longer before those who take it will use a wheelchair. Too late for me. The once a month infusion (administered at an infusion center) had some attraction. The info packet also included information about PML. Progressive multifocal leukoencephalopathy is a rare and usually fatal disease, incidence of which is increased by taking Tysabri. Six patients receiving the drug have contracted PML; four deaths have been linked to Tysabri. My doctor suggested it would be an appropriate medication because my MS is progressing.

Every time I worked the equation in my mind, the fact that "could kill me" was on the Tysabri side made the medication switch seem like a bad idea. It seemed that the doctor was suggesting that it would be better for me to risk death than to become more disabled. That made me remember the disability activist group called Not Dead Yet, formed to combat the spread of legalized assisted suicide.

When I think about suicide (and that is fairly frequent), I realize that I don't really want to kill myself. I want to kill a difficult situation. I want to kill the limitations that my care places on my family. I want to kill the lack of care I get from the medical system. A recent editorial in the New York Times pointed out that chronically ill Americans suffer far worse care than their counterparts in seven other industrial nations. For me, the antidote to suicidal thoughts is often to think, "If [name some level of care I am not receiving] were in place, would I still want to die?" Then I realize how much I want to live.

For instance, if I had someone who could help me to the bathroom in the middle of the day and someone who could take over my care so that Ralph and Alexis could travel, I would feel so much less a burden on them that I would stop wondering if there is a bridge over which I could drive my wheelchair.

Samuel Johnson wrote, "when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully." My neurologist's suggestion that I risk death by taking a new medication has invited me to a new appreciation of life.

Birth of a Disability Activist

It must've been five years ago that I first had the thought that maybe I should work to change the health care system. It is so obviously broken. On the other hand, that seemed like an entirely self-serving activity. Poverty seemed like a more far-reaching and important issue. I did some volunteer work for Habitat for Humanity and felt like I was making a contribution.

Since this latest increase in my disability, I have called a local agency that serves people with disabilities. I explained my situation and asked them what they could do for me. They suggested Meals on Wheels. I visited my neurologist and asked him for a referral to a physical therapist. (Each day I feel myself getting more and more clenched up and spastic.) The doctor talked about a change in medication(more about that in a later post) and gave me a referral to a rehab doctor.

Time passed. Spasticity increased.

My husband, Ralph, discovered that, according to our insurance, we could access physical therapy services without a referral. I called a PT office near me to ask about it. They explained that while I didn't need a referral, I did need an order.

healthcare speak:
Order: to give a prescription for
referral:
the process of directing or redirecting (as a medical case or a patient) to an appropriate specialist or agency for definitive treatment

I called the neurologist's nurse. Before calling me back, she must have called the rehab doctor's office. She reported that they had not hurried to contact me since they have no openings in the near future. She convinced the doctor to sign an order for PT in the meantime. The rehab doctor's office called me that afternoon to set up my appointment for late January. I have a physical therapy appointment on Monday.

Since the health downturn, Ralph has been lifting me several times a day to and from my wheelchair. He is having back pain, possibly related to lifting, possibly not. Either way, I'm sure the lifting isn't helping.

I called my local MS Society office to ask about what help we could get. Their equipment guy told me that a Hoyer lift is one of the most frequently purchased items by insurance companies. He said that he would have a social worker call me back about home health aides, but so far I have heard nothing.

The slow pace of this process and the amount of dead ends I am discovering are frustrating me.

At the same time, the world has been focused on an economic downturn and the United States' presidential election. Because of the gadget I inserted into my last blog entry, I was invited to insert another.

Enter your name to get the REAL Washington story! First Name: Last Name:

When I used it at the end of a day of dead-end phone calls, it felt like a Sign.

To help my family and to help myself, I must become a health care activist. The only way to make its so it is not totally selfish activity is to make it a broader effort. It cannot be about me, it has to be about us.