Monday, June 4, 2007

MS and Me - A Retrospective, Continues: 2005

It is 2005 and George W. Bush and Cheney are in the White House for the second term. The terrorist attacks on 9/11/2001 have changed the global landscape. The Taliban were ousted from power in Afghanistan. US troops are in Iraq. Saddam Hussein is on trial for crimes against humanity. The US is holding suspected terrorists at Guantanamo Bay, Cuba, without formally charging them with crimes or allowing them to see lawyers. Hurricanes Katrina and Rita devastated the Gulf Coast earlier this year. Medicare has introduced a prescription drug coverage benefit. The Steelers have a good team thanks to Ben Rothlisberger, the QB. The fourth Harry Potter movie is in theaters. Tedd is part owner of a company and trying to get this small business running. I’m addicted to Su Doku number puzzles. Richard Pryor died of heart failure in December.

I now work in Maryland because my job on the DuPont account was sent “off shore” to Canada along with other jobs that went to Spain and India. Jobs in the company shifted from commercial contracts to government contracts after the terrorist attacks of 9/11. I stay in a furnished trailer during the week because my almost-constant fatigue limits my commuting ability and endurance, and I need daily naps.

Wow! I can’t believe it has been six years since my last major MS exacerbation, the kind that kept me out of work and erased my memories of those months. I credit the Copaxone injections for helping the slow the progress, which is good because this stuff costs $1,700 a month. Thank goodness for health insurance!

Although my MS has not gone away and continues to progress, albeit slowly, I am still leading a fairly normal life. Fatigue limits me most days and impacts me at work, and I can rarely work 40-hour weeks. I use my rights under the FMLA (Family Medical Leave Act) to work short days when my fatigue is really bad. I periodically walk with one of my three pretty canes from because I have spasticity and weakness in my right leg and become unsteady. In spite of that, Tedd and I walked 20 miles over two days in the MS Challenge Walk in Philadelphia in 2005 (and that was quite a challenge for me!).

In addition to the debilitating fatigue and spasticity, I sometimes experience milder reoccurrences of all the previous attacks, such as dizziness and tingling and difficulty seeing. I also experience the Lhermitte Sign (shocks) sometimes. But I feel that these are all manageable now and can even find humor in some situations. When I am unsteady and stumble, I laugh and say, “Wheelers wobble but they don’t fall down!” And besides, it’s okay now – I’m used to it.

There have been great steps forward in MS research since my first attack. There are now five injectable medications that are effective in slowing the progress of the disease. That’s five more than were available when I had my first attack in 1986, four more than were available when I had my second attack in 1993, and two more than were available when I was diagnosed in 1999. Not a cure, yet, but it looks like they are getting closer.

The MS Society has issued a statement, supported by insurance companies, that newly diagnosed patients should begin treatment with one of the injectable drugs immediately. Gone are the days where neurologists tell patients to quit work and don’t exercise. Patients no longer accept diagnosis of “maybe you have it, maybe not, now go home and see what happens.” Celebrity spokespeople, including Terri Garr and Meredith Vieira (her husband has MS) have brought visibility to the disease.

Because I’ve had this disease so long and try to stay aware of current research, I have seen great strides in understanding MS. Although I’ve seen setbacks and medications that were pulled from the market due to adverse effects (like death) or were not effective as hoped, I’ve seen improvements in diagnostic techniques and increases in viable medications in the last ten years. I’ve seen improved understanding of mechanisms behind the disease. Stem cell research and spinal cord injury research have also provided some clues to the MS MyStery. This gives me great hope that a cure is coming in my lifetime.

I’ve discovered the importance of support groups and have found a number of caring organizations that give me comfort and understanding. MS affects each victim differently, so no two people experience exactly the same thing. When MS people meet, a common question is, “What symptoms do YOU have??” The only thing we all have in common is the unpredictability of the disease. And each other. Connecting with these MS support groups gives me hope that I am not alone and can rely on the MS Society and community in times of need.

But with knowledge and support, I’ve come a long way in dealing with the horrors of this disease, and it is no longer as frightening as it once was. Since my MS stabilized, I’ve been able to reach outside of myself and help people who are newly diagnosed to understand their options and to listen to their fears and disappointments with compassion. I help them to understand that they are not alone in this strange land. I’m able to listen to the concerns of healthy family members and co-workers who are misinformed or confused and don’t know what to do.

But most important to the victims and family, I’m able to share a little hope because I have lots of it to spare. I know that there is support to help manage symptoms. I know there are coping strategies to deal with the symptoms and limitations. I know there are organizations and other people who will be there to help.



  1. Susan Moore-Motily, MAJune 24, 2007 at 1:03 PM

    Nice job on your Blog! I will use it as a resource with clients of mine who have been diagnosed with MS. I am glad to see your positive attitude & your sense of humor...& your developed sense of resiliance!
    Susan Moore-Motily, MA
    Licensed Psychologist

  2. Hey Joan!!
    Nice Blog!! You identified the photo credit as "DOO", is that the "Dirty Old Ogre" you live with? You did a wonderful job with your story...I don't know how you deal with the MS, your job, & Tedd & stay same! That's assuming you are sane!?!
    Love & Blessings...