2016

Managing Pain By Dr. Alejandro Tobon

As anyone suffering with GBS or CIDP already knows, neuropathic pain is a common occurrence and is often accompanied by numbness or extreme sensitivity to touch. Neuropathic pain is also unpredictable. Presently, there are no specific FDA-approved medications for neuropathic pain, a particularly frustrating situation for doctors whose goal is to make their patients as comfortable as possible while they deal with the residuals of GBS or CIDP. Since 10-30 percent of the population (or 1 in 3 persons) deals with chronic pain, seeking ways to minimize the symptoms and discomfort are primary for physicians.

In a recent Rotterdam study, 36 percent of patients (or 1 in 3 persons) experienced initial pain even prior to diagnosis. In the acute phase (within the first two weeks,) 66 percent of patients (or 2 in 3 persons) experienced pain, and after two years, more than 40 percent were still experiencing residual pain. 70 percent of patients across all various forms of GBS said their pain was severe.

Comparisons also showed that there are commonalities in the location of pain. Not surprisingly, most patients experience pain in the extremities, (i.e., arms, legs, back,and shoulder blades.) Regarding treatment, in a GBS study of 172 patients, Gabapentin performed better than placebo, and steroiduse
proved non-effective for pain and is not recommended going forward. Similarly, 40 percent of CIDP patients noted an increased intensity of pain, and in many cases, consider it severe. However, location of pain remained virtually the same as with GBS patients.

What can we do, then, for the treatment of pain? My advice to you, first and foremost, is not to rely on
medications only—and, limit any type of pain injections if possible. As an alternative, consider occupational or physical therapies. Try acupuncture, yoga, and tai chi.

These types of therapies also help provide a mental relief from the day-to-day reminder of what you are
experiencing. They are a great way to broaden your outlook on life and an opportunity to make new friends.

Most importantly, set up some general rules for your pain management. Create reasonable expectations and goals to manage your pain. Remember, with chronic pain, it is critical that you establish reasonable goals. Other than total pain relief, reach to achieve a level of tolerable pain. Also realize that side-effects are to be expected. They will happen. Get used to it.

Studies also show that when considering occupational and physical therapies, start slow and gradually increase activity over time. And, it is recommended that you should begin treatment sooner than later after diagnosis. Don’t wait. And, outcomes are usually better if you work with a pain team. Make sure all team members are in contact with one another to insure the best communication related to your care.

Remember to manage other symptoms outside of those directly related to GBS or CIDP, as well. Symptoms like depression and insomnia. Do your best to develop coping skills. Attend support groups. Each of these suggestions will all help you manage critically important facets of living like, work, recreation and sleep.

As with alternate therapies, manage your medications appropriately. Start with the lowest dose and gradually increase the medication until you’ve reached maximum effectiveness. Should you discover no relief from any one drug, discontinue the use of that drug as soon as possible and make sure you taper off the medication.

Lastly, I’d like to make you aware, that we are currently involved in active patient studies in 40 centers across the nation with the goal of determining which pain medication works the best and which medications have the least, and the most, side effects.

I am encouraged that research science is moving forward in all of these areas and remain optimistic about your future as you manage your pain.

Introducing Jim Crone, President, GBS|CIDP Foundation International Board of Directors

We are proud to introduce Jim Crone as our new Board president.

Jim was initially diagnosed with GBS in 2006 and later that same year with CIDP. He began working with the Foundation as a liaison in 2011 and was elected to the Board of Directors in 2013. He previously served as vice-president. In addition, Jim has assisted the Foundation with its marketing, communications and advocacy efforts.
Jim graduated from Bradley University, Peoria, IL, with a BS in Communications. Since his graduation, he has held various positions with the University in the areas of Marketing and Communications. Jim currently serves as the Director of Web Marketing and is responsible for the
University’s digital marketing initiatives. Jim travels the country frequently to share his GBS-CIDP patient experience with industry partners that develop
therapies for GBS and CIDP patients.

He, and his wife Jenny, have two daughters, Addison and Emma, and live in Peoria, IL.

From The Director

Dear Friends,
The holidays are a time to count our blessings and be grateful for the gifts of family, friends, and the basic provisions of life. However, when you or a loved one’s life (like my son, Stuart,) has been turned upside down by a frightening diagnosis of GBS or CIDP, gratitude may be difficult to muster—especially when the diagnosis seems unsure and there are no nearby resources for education, care and support.

We dedicate this issue of The Communicator to those who joined us in San Antonio where we saw “gratitude” in the eyes of each attendee. In this issue, you’ll see photos of the event, learn about our speakers, and read about their presentations. All which reinforce, yes, “there is life after diagnosis.”

Stuart and I, and everyone here at the Foundation, wish you, and your family and caregivers, the most joyous of holiday seasons and a healthy and happy new year!

My best,
Lisa Butler

Executive Director

GBS|CIDP Foundation’s Perfect 100 Score!

GBS|CIDP Foundation International announced it has earned a flawless score of 100 from Charity Navigator for Financial Health, and Accountability and Transparency. Charities with these distinctions execute their missions in a fiscally responsible way while adhering to good governance and other best practices that minimize the chance of unethical activities.

Foundation CFO, Camille Yee
Foundation CFO, Camille Yee

These two 100 ratings translate to a perfect record which is earned by less than 1% of the thousands of charities evaluated by Charity Navigator. Since the award was given, the Foundation has received several significant gifts.

In talking with these most generous supporters, we learned that the Charity Navigator designation was an important factor in their decision as to which of the thousands of charities available to them to support. Camille Yee, Foundation CFO for more than 24 years, stated, “this designation is an encouragement to me as I strive to be the best steward of Foundation funds as possible. The mission to support patients is our foremost responsibility. Without sound fiscal management the GBS|CIDP Foundation International would be unable to do so.”

 
Here’s are a few examples:
Anne Laver, Aiken, SC, wrote: “Here is a photo of the group at Wellington, celebrating Big Red’s win. A great celebration
for an outstanding nonprofit. It was Boyd, along with these folks, who chose GBS|CIDP Foundation International as the recipient of the $10,000.” Regards, Anne!

 

gbs-nl-0916_web-version-final

 

Pat Reese, wife of Dale Reese Foundation founder, Dale Reese, Blue Ball, PA, called to say, “I choose ten charities a year to disperse funds in honor of my husband, Dale. When searching which local charities to support, I choose only those with outstanding ratings on Charity Navigator. Congratulations, on your well-deserved award.”

Ronald and Christine Sobchick, Fullerton, CA, recently donated $10,000. The Sobchik’s daughter, Laura, was diagnosed 36 years ago with GBS. They wrote, “GBS|CIDP Foundation International has done amazing research. We would like to continue this mission. Laura recently married and we have given this gift in honor of her.” Ron and Christine, we are honored to share in this joyous occasion with you and your family. Thank you for your gift.

For more information about our score on Charity Navigator, visit
charitynavigator.org/index.cfm?bay=search.summary&orgid=10284

November is National Family Caregivers Month

Take Care to Give Care!

The first rule of taking care of others: take care of yourself first!

Caregiving can be a rewarding experience, but it is also physically and emotionally demanding. The stress of dealing with caregiving responsibilities leads to a higher risk of health issues among the nation’s 90 million family caregivers. So as a family caregiver, remember to pay
attention to your own physical and mental wellness, and get proper rest and nutrition. Only by taking care of yourself can you be strong enough to take care of your loved one. You really do need to “take care to give care!”
• Caregiving can be a stressful job. Most family caregivers say they feel stressed providing care for a loved one. With all of their caregiving responsibilities—from managing medications to arranging doctor appointments to planning meals—caregivers too often put themselves last.
• The stress of caregiving impacts your own health. One out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Due to stress, family caregivers have a disproportionate number of health and emotional problems. They are twice as likely
to suffer depression and are at increased risk for many other chronic conditions.
• Proper nutrition helps promote good health. Ensuring that you are getting proper nutrition is key to helping maintain your strength, energy, and stamina, as well as strengthening your immune system. Maintaining a healthy diet is one of the most powerful things you can do to take
care of yourself and keep a positive attitude overall.
• Ensuring good nutrition for your loved one helps make care easier. As many as half of all older adults are at risk for malnutrition. Good nutrition can help maintain muscle health, support recovery, and reduce risk for re-hospitalization—which may help make your care of a loved one easier.
• Remember: “Rest. Recharge. Respite.” People think of respite as a luxury, but considering caregivers’ higher risk for health issues from chronic stress, those risks can be a lot costlier than some time away to recharge. The chance to take a breather—the opportunity to re-energize—is vital in order for you to be as good a caregiver tomorrow as you were today.

During National Family Caregivers Month, we remind family caregivers that to be strong enough to care for your loved one, you must Take Care to Give Care!
For more information, visit caregiveraction.org