Chiari Malformation

Thank you for doing a story on Chiari I malformation! There are so many of us out here now, correctly diagnosed, because MRI is widely available. It's very sad that it took a famous person to put a face on this painful disorder, and I am so sorry that Rosanne Cash has had to suffer with it. I think she's a wonderful lady. I love her music and her writing.

I truly hope that in the future, Chiari patients will be taken seriously and treated with the respect they deserve. Many are angry and frustrated at the years of misdiagnosis, which can take a terrible toll on one's health and emotions. Finances are another story. The cost of misdiagnosis is higher than people think-you're paying for fibromyalgia care, but you don't actually have fibromyalgia; then you're paying for arthritis care, but you don't actually have arthritis. Sometimes, people take medications that are not helpful and cause side effects.

Primary docs must take their patients' chronic headaches seriously. Being told there's nothing wrong with you can make you feel like you're going crazy. My headaches started when I was 10 years old, and I wasn't correctly diagnosed until I was 40, even though I had been reporting the same symptoms for 30 years straight.

Thank you again for doing this story. I am so grateful. - Julie Carter, Antioch, TN

Financial and Estate Planning

I just read the articles about Martin Shenkman and his wife, Patti, in the April/May 2012 and June/July 2012 issues of Neurology Now, and then checked their website (rv4thecause.org) for a possible seminar near our home but without success. We live just outside of Clarksville, TN.

My wife was diagnosed with multiple sclerosis (MS) in 1999, with a presumed onset of the disease sometime in the mid-1980s. She is now 55 years of age (56 this coming September) and her mobility is impaired to the point of needing mechanical assistance.

I'm a retired military trained nurse with physical disabilities. I notice that she is having lapses in judgment and memory, and I was questioned today, by my own mental health counselor, about her abilities and whether I felt it was time to intervene in her affairs. She is having trouble handling her finances, which are separate from mine. She is overextended on her credit and not timely in paying her bills.

Does Mr. Shenkman's seminar cover this topic of handling the affairs of those no longer able to do so?

This is not something that I want to do. I hate being in the position of "taking control" of any area of my wife's life, but I would rather that she be mad at me and protected than vulnerable because I did not act. - Guy Slater, Big Rock, TN

MARTIN SHENKMAN RESPONDS: Thank you for your letter, Guy. I would suggest calling the National Multiple Sclerosis Society at 1-800-FIGHT-MS (344-4867) and speaking to one of their counselors. See Resource Central, page 49 of this issue, for other MS organizations.

We are in the process of rebuilding our website to make it more accessible to those facing the challenges of chronic illness. A schedule of future seminars is not currently listed, but based on your letter we'll add it as we rebuild the site.

I think you should also speak with a legal professional in Tennessee. You and your wife should have health care proxies, living wills, and HIPAA releases (these are explained in my article in this issue, page 42). A durable power of attorney and a revocable living trust might also be valuable.

As for the financial issues, you should meet with a financial planner. You might start by searching for a fee-only financial planner through the website of the National Association of Personal Financial Advisors (napfa.org ). If this is not affordable, the Financial Services Professional organization runs a wonderful volunteer program for the National MS Society to provide financial planning advice to those with MS.

Neuropathy in the Shower

Thank you for your informative magazine. My wife and I both have neuropathy; hers is the painful kind. After multiple surgeries on her feet for other problems over the past six years, she has become extremely sensitive to being barefoot in the shower. We have looked far and wide for something comfortable and found nothing. However, I fashioned a mat for her out of the Norsk-Sport Foam Mat. This mat comes in a package of eight interlocking pieces in a variety of colors. I cut one mat to fit her shower with a drain opening in the center. She has used it and says it is the most comfortable mat she has ever used. The mat is available at most sporting goods stores. Hope it is helpful to others. - Edward Leonard, Roanoke, VA