Together Patient Advocates Blog

When I was diagnosed with multiple sclerosis (MS), in 2007, I was still working as a family physician. I had a theoretical understanding of the disease; I understood how it was diagnosed, and the treatments available. But I did not know how to live with the disease. That kind of information just isn’t taught in medical school. It comes from having MS yourself, or via experience with many people who suffer from the disease. All my neurologist offered were some drug company brochures, so I could decide which medicine to start.

My first stop was the local bookstore. MS for Dummies was surprisingly helpful. It provides a detailed overview of the disease and many the practical topics--giving a sense of how to live with MS. The most recent edition was published in 2012, so it isn’t a reliable source of treatment options anymore. Other books that I found useful were MS and Your Feelings and Facing the Cognitive Challenges of MS. I keep copies of both to loan out to newly diagnosed acquaintances. If purchasing books isn’t an option, the Multiple Sclerosis Association of America offers a lending library of MS related books and videos. If you need a good way to talk to your kids about MS, check out the publications Keep S’Myelin, Mommy’s Story and Daddy’s Story.

The National MS Society is a phenomenal source of information about everything MS. Contact the National MS Navigator hotline for any MS related questions. The National MS Society website has articles and videos on everything from MS treatment to how to manage urinary incontinence to talking with family about your diagnosis. The Northern California MS chapter offers an online newly diagnosed orientation . There are many support groups in the area; they are a great place to learn about how to live with MS, to meet others going through struggles similar to yours, and to get--and give--support. If a facebook support group is more your style, contact me and I’ll add you to a secret facebook group for people with MS or you can join the MS Connection online community.

More intensive support for MS is offered through the MS Achievement Center and through the CAN DO program. We’re quite fortunate to have the MS Achievement Center in Sacramento. Run by Dignity Health, it’s a day program for patients with MS and includes a customized fitness program for each patient, emotional support, a cognitive fitness program, and education on a variety of topics. Classes run from 10-3 on Tuesday, Wednesday, and Thursday. The Achievement Center also offers a weekly “Living Well with MS Program,” a monthly “Writing as Healing” Workshop, and a bi-monthly book club. Other programs are offered periodically. These programs will help you manage MS in your daily life.

The Can Do program is a four day comprehensive MS program offered in Denver, CO, and other locations annually. The program is free; participants apply through the center for admission. They also offer a one-day “Jump Start” program and a weekend “Take Charge” program. Webinars are available on a variety of topics.

Other educational offerings are available in the Sacramento area through the National MS Center, The Dignity Health MS Lecture Series, and various talks by pharmaceutical companies (these usually include dinner at a local restaurant).

Yoga and Pilates have beneficial effects for patients with MS. Locally, classes are available through the MS Achievement Center’s Living Well with MS Program. Adaptive yoga classes are also taught by Donna Rixmann for patients with MS or a variety of other concerns. Donna offers group classes as well as private sessions and I can personally vouch for the excellence of her classes. Additional offerings include the Yoga and Tai Chi Self Help group weekly meeting in East Sac (contact Cynthia at (916)-682-9030 or Evelyn at (916) 391-1365). The Ease of Being and The Sacramento Yoga Center also offer adaptive yoga classes.

Recreational activities for those in need of special accommodations in the Sacramento Region can be accessed through the CAN DO program, Access Leisure, and Environmental Traveling Companions. ETC has a kayaking trip scheduled for July 2017 and rafting September 2017. BORP offers adaptive activities in the Bay Area.

These are the resources for people with MS in the Sacramento area I am aware of. I’m sure there are other hidden gems; if you know of something not mentioned here, please add it in the comments section or contact me! If you’d like more individualized support in managing your MS, I am available to serve you as an independent patient advocate.