It was the fall of 1998 when Vicki Ruddy felt herself getting weaker and weaker.
She had trouble reading, especially on a computer. She was short of breath and her legs felt heavy. She was dropping things and had trouble opening doors. Even chewing became difficult when she was tired, which was happening more and more often.
Her doctor couldn't find anything wrong. He and others suggested that it was stress, nerves or depression.
She finally got so weak that her husband, John, took her to the emergency department. There a neurologist diagnosed her with myasthenia gravis (MG), a neuromuscular disease that can profoundly affect lives.
For more than 20 years now, Vicki and her husband have met the many challenges that patients dealing with MG face. In order to deal with such challenges, and with encouragement from her neurologist, Dr. Michael Cartwright, Vicki formed a local support group for people with MG.
Vicki tells her story in her own words in the following interview.
How has it been to live with myasthenia gravis?
Myasthenia gravis is life-altering. I am currently stable after surgery and with the help of medications am now able to work part-time at a desk job. But I was unable to work at all for a long time.
I am fortunate to have a very supportive and compassionate husband, as one of the most challenging aspects of this disease is the unpredictability of how I will feel day-to-day and sometimes hour-to-hour.
John took a lot of time off work as an elementary school teacher to take care of me, particularly in the first couple of months. He and our friends took me to doctors' appointments, did our grocery shopping, cooked meals, did laundry, cleaned the house and mowed the lawn. John even had to help me dress and bathe.
Being in the classroom, he could not call me during the day nor could I call him if I needed him. I carried the phone around with me from room to room so that I could call whomever I knew was available if I needed help. John called me every day the minute the kids were gone and came straight home to finish his work. He was not able to continue with his own graduate studies, play hockey, or work during his summers off from teaching.
Gradually, I gained strength to drive again, go with someone to grocery shop and cook some. I then improved enough to grocery shop on my own and keep the house up. I had a relapse for a year or so and John had to return to doing everything for a while.
I had forgotten how much he did and how much I couldn't do! I still don't know how I could do it without his help and support, but feel so fortunate that I am currently able to do all that I can.
MG can affect more than just the patient's household. Was this true for you?
My parents' and grandparents' lives were significantly altered as well. I am an only child and was an only grandchild on one side of my family. When I became an RN, the plan was for me to take care of my grandparents and then my parents when the time came. I wanted to take care of my grandmother after her stroke, but was unable to, and she had to go to a nursing home.
I was able to help take care of my grandfather for a while when he needed it, but eventually we had to get help when I could no longer keep up physically.
MG requires that you (and those in your life) learn to become very flexible in the planning of your activities as much as possible. Learning your limits and how to pace yourself and conserve strength are crucial. Spacing out activities is a must. Don't take a shower before planning to go grocery shopping, don't go grocery shopping right before time to cook a meal. Have someone else carry the laundry, etc. It can take many months to several years to find a treatment plan that works. Isolation and depression can become very real challenges.
What does the Triad MG Support Group do?
Our group has been very fortunate in its consistency. There are new members joining us on a regular basis and most of them are newly diagnosed. Several members from our very first meetings are still regular attendees, and some real friendships have been formed.
We have members of all ages, ethnicities, genders, and length and severity of diagnosis. Approximately half of our meetings have a speaker/presentation such as a neurologist like Dr. Cartwright, physical therapist, counselors, pharmacist, insurance and treatment specialists.
There are about 90 individuals who have attended one of our meetings at least once since June 2009, with an average of 10 to 18 attending each meeting. Many of the members contact each other throughout the month via phone, email or in-person to ask questions, offer support and to build friendships.
What are the biggest issues myasthenia gravis patients face? How does the support group help them with those issues?
We like to say that our doctors help us manage our disease, but other ‘MGers’ help us learn how to live with it! There are many challenges dealing with MG. Most often the hardest times are those up to, and right after, diagnosis. The weakness makes you feel awful and the unknown of what is going on can be worse.
Often there is some temporary relief when a diagnosis is finally made – powerful confirmation that something really is wrong after all. This is usually coupled with fear of not knowing anything about this awful-sounding disease and hope that with diagnosis a fix will come and life can return to normal. This is the stage that a support group can be the most helpful, although it takes courage to attend. Many fear that what they will hear and see will be more scary news, people better off, or even people worse off than themselves.
Rarely do they regret going to a meeting. Usually it is the first time they have ever met someone else with MG. The connection is very therapeutic; for the first time, they feel understood. Someone else understands exactly what and how they feel.
Family and friends often attend and gain valuable insight into the realities of life with MG. They learn that their good intentions of encouraging us to "try harder" or "keep pushing" do not benefit us, as repeated use of our muscles makes us weaker. They also see that they themselves are not alone in the disappointments they face in the loss of a healthy partner, the constant need to adjust plans, the loss of enjoyment, etc.
Many are faced with a physical and emotional roller coaster ride of ups and downs with treatment options. It can, unfortunately, take a long time to find a treatment that works well for each individual. And many will never return to the health they once had, and must learn a way to cope with the reality that the fix they had hoped for is not possible.
The support group can be very helpful in navigating the emotions of hopes and disappointments of treatments. Members learn from others' experiences with the very same treatments, like side effects and tips on dealing with them, the disappointments of treatment failure, and questions for their doctors and pharmacist.
The meeting is a place where they feel safe in asking ‘silly questions’ and a place where they do not feel rushed. Seeing that others with MG can continue to have quality of life is very therapeutic!
Some of the benefits received at meetings that physicians do not always have the time to explore include:
- An understanding of the disease and what is going on in the body
- How treatments actually work
- Questions for your physicians
- Insurance information: health and disability
- Emotional coping skills
- Energy-preserving tips
- Encouragement
- How to communicate with family, friends, employers and co-workers
- Cautions, such as:
- Heat can make us feel much weaker
- Pesticides can increase our symptoms
- Never accept a new prescription without asking if it is safe for MG
- Avoid too much magnesium
- Alcohol can increase symptoms
- There are concerns with some dental treatments for MG
How have your physicians at Wake Forest Baptist Health helped you with the disease?
We are so lucky to have experts in myasthenia gravis and the local MDA clinic at Wake Forest Baptist Health. It is very important to have a good relationship with the physicians caring for you, especially if you have a serious or complex disease. I am very confident in Dr. Cartwright's expertise in MG and am so pleased with what a nice and caring person he is.
He has done an excellent job in helping me remain stable with my MG and I am very comforted to know that if my MG worsens he will be there and will know exactly what to do for me. Additionally, Wake Forest Baptist is helping many in the community by supporting the Triad MG Support Group.