“Heal the wound but leave the scar”
This is the last of the series describing my recent experience with Guillain-Barré Syndrome (GBS). You can find the first three blogs in the archives: I’ve looked at caregiving from both side now; To admit or not to admit (to the hospital); and This is not a comedy show.
You may ask why I spent so much time on this subject. Besides being good therapy, my first goal was to acquaint readers with this rare neurological disorder. When I informed people I had GBS, almost everyone of them responded with, “What’s that?” My second goal is to share lessons I learned while being a care recipient. Although my experience was short-term, I acquired a different viewpoint while on the other side of caregiving.
Before revealing these lessons, here is an overview of GBS.
• French neurologists Georges Guillain and Jean Alexandre Barré described GBS with French physician André Strohl in 1916. Now you know where this condition got its difficult to pronounce name. Pronunciation: ghee/ya~ bah/ray.
• GBS is a rare (about 1 to 2 persons in 100,000 each year in the USA) neurological disorder in which the body’s immune system mistakenly attacks part of the peripheral nervous system (the nerves located outside the brain and spinal cord). The resulting damage to the nerves’ protective covering (myelin sheath) prevents the nerves from transmitting signals to the brain, resulting in weakness, numbers or paralysis. GBS is considered a serious condition that requires immediate hospitalization because it can worsen rapidly. The sooner appropriate treatment is started, the better the chance of a good outcome. GBS can strike anyone, but men and young adults have a slightly higher risk.
• The first symptoms are often unexplained sensations, such as tingling in the feet or hands. Leg or back pain or difficulty walking may also occur. Weakness on both sides of the body that inhibits walking or climbing stairs is the major symptom that prompts most people to seek medical attention.
Other symptoms include eye muscle/vision problems; difficulty swallowing, speaking or chewing; problems with coordination; and abnormal blood pressure or heart beat. In early stages, GBS may be difficult to diagnose. Symptoms vary and are similar to those of other neurological disorders. After a thorough medical history and physical exam, a spinal tap (lumbar puncture), electromyography and nerve conduction studies are most often used for a definitive diagnosis.
• The exact cause of GBS is unknown. It is neither contagious nor inherited. Many cases occur following a respiratory infection. Surgery or certain vaccinations may increase the risk.
• Although there is no cure for GBS, two treatments are used to reduce the severity of the illness and promote a speedy recovery. Immunoglobulin therapy, in which healthy antibodies from blood donors are administered intravenously, has proven effective. A more complicated treatment, plasma exchange (plasmapheresis) removes the liquid portion (plasma) of the blood and separates it from blood cells. It is then put back into the body, which makes more plasma to replace what was removed. Physical therapy and training with adaptive devices (wheelchair, walker etc.) are utilized during recovery.
• Most people recover within 6 to 12 months, though this process could take as long as three years. Some people may continue to have weakness or tingling sensations for years. Approximately seven percent have a delayed recovery. The mortality rate is generally less than five percent.
Here are some of the lessons I learned as a care recipient…
1. It is much harder to be in the position of needing care than giving care. Sickness, pain, inability to do for one’s self – this is not a good place to be. Having to depend on someone else to go to the bathroom, bathe, dress, ambulate – reiterated to me the importance of caregivers being kind, respectful and discreet.
2. You must express legitimate concerns. Persnickety patients can be a pain; but inappropriate care should never be tolerated. Do not be afraid to speak up when you are mistreated or neglected. Immediately ask for or call the supervisor. Stay calm. Report exactly what happened. Request that immediate changes be made to correct the situation. On the other hand, do not be overly demanding or impatient in inconsequential situations.
3. Caregivers come in an array of personality types…stern, silly, sweet, sour. It is good to appreciate their differences and show appreciation for all they do. Personally, I didn’t always feel jovial and preferred those around me not to be too perky, but it sure beats mean.
4. It helps to have a positive attitude. Spending two weeks in the hospital had not been on my summer schedule, but it happened, and there was nothing I could do but accept my situation and make the best of it. On day two at the rehab, I decided to pretend I was at a resort. It sort of worked. Ask, “What can I learn from this experience that will help me be a better person?”
5. A touch of home can be comforting. Rehab facilities are usually not known for their pleasant ambiance, but a few favorites from home can create surroundings conducive to recovery. (Just don’t overdo it.) My must-haves: my incredibly soft snuggie and huggable pillow; family photos; devotional book; and favorite music on my husband’s i-pad. And once you are on the road to recovery, a real gown that doesn’t gape in the back is a tremendous boost!
It has been almost five months since my encounter with GBS. I am doing well. The only lingering traces are occasional strange sensations in my fingertips, which I no longer refer to as “squishy.” These do not interfere with my sense of touch, but when I notice them, I am reminded of a Point of Grace song, Heal the Wound. The lyrics include, “…heal the wound but leave the scar, a reminder of how merciful You are.” I think of my wound as GBS, and the intermittent sensations as the scar. When I notice them, I cannot help but remember my experience, and indeed how merciful God was to me.