Sharing Experiences

Sharing Experiences
Submitted by: Ellen Burns Deater

Family gatherings take place throughout the year, not just at the reunion. But for many of us who are far away, it is not possible to make the trip “home” more often than yearly. When the family was smaller and geographically closer, the get togethers for Decoration Day, Independence Day and Christmas were times of sharing experiences with the disease, as well as other family stories.

I remember a large family meal in Mona and Carl’s basement when they were building their “new” house. A cup of coffee was being passed hand to hand down the table to Russell. Harvey sat next to him, and as he passed the cup and saucer asked, “Where do you want it? On your head or in your lap?” With that, his crippled hands failed to retain their grip and the hot coffee spilled on Russell’s pants. Without missing a beat, Russell turned to Harvey and said, “I thought I had a choice!”

They, and other family members, discussed their symptoms and treatments. Since the Deater family now covers the country, it is less easy to have those discussions. I have received permission from some folks to share what they have learned about the disease.

Charcot foot

A complication of many neuropathies is injury to the bones of the foot. This is caused by repeated trauma- the pounding of the foot against the ground- and the inability of the individual to recognize pain and rest the foot. Ulceration and infection in the feet also contributes to the injury to bones and supporting tissues. Sometimes the bones suffer fractures and displacement from their usual positions in the foot. This condition is known as “Charcot foot”, named after the same doctor who was one of the first to describe the neuropathy Charcot-Marie-Tooth disease.

Most of the literature about Charcot foot describes a diabetic’s foot, as diabetes is a very common cause of neuropathy in the feet and legs. The arch of the foot falls and the bones spread out. Sometimes this is so pronounced, the result is called “rocker foot”, because the bottom of the foot bulges out and takes on the appearance of a “rocker”.

Chris Deater Christensen developed Charcot foot after years of ulceration and bone infection in her foot. It was after she finally had surgery to remove bone to get rid of the infection that the condition developed. She was recovering well from the infection, but developed pain in her foot. This was a good warning sign for her, but not everyone gets pain with this condition, or they may assume the pain is just a continuation of the neuropathy pain that they usually have. Chris has recently had surgery to correct her Charcot foot. This involves re-aligning bones and holding them in place with plates and screws. Her doctor anticipates that her foot will be “nearly normal” in appearance. The surgery should also reduce the likelihood of pressure areas on the bottom of the foot. She will have to watch closely the areas where the appliances are located.

Orthotic devices to relieve pressure

Pressure areas on the feet of someone who has lost feeling is a potentially dangerous situation; you could even say life threatening. Pressure leads to ulceration, which can lead to infection, which can cause sepsis or infection throughout the body. Paul Clemow has found a place in Santa Barbara, California called “The Good Foot Store”. At the store they have a device to determine pressure points on the foot, and sell inserts that even out the pressure, so that no one point (such as the ball of the foot) is supporting most of the weight of the body. Many family members who have had ulcers have custom made orthosis for their shoes. But for others, this may be a good preventative measure. There are undoubtedly other stores that provide a similar product.

Paul also recommends Aquaphor cream to prevent rough spots and calluses on the feet. He has tried several different products and finds this one works best for him. Those with impaired feeling know that ulcers often form under calluses.

Larry Deater has suffered for years with a hiatal hernia and reflux esophagitis, the condition in which stomach acid splashes back up the esophagus. You can tell by television commercials that many people have this problem, and it may or may not be related to the neuropathy. Larry’s condition has progressed to a pre-cancerous stage known as Barrett’s esophagus. Since there is a history in the family of esophageal cancer, this is a condition to watch closely. Avoiding spicy food, alcohol, soda pop, and not smoking are key factors in keeping this condition under control.


The pain that comes with neuropathy is perhaps the most life altering aspect of the disease. Pain can keep people from using a limb, which leads to further muscle weakness and deterioration. Pain can limit work and social activities and interfere with sleep. It can cause irritability and personality changes. It is ironic that a disease that prevents people from feeling pain causes so much pain itself. The pain has been described differently by different people, and often people will have several different types of pain, either at different times in the disease or concurrently. Many people become so used to the “dull ache” that they fail to describe it as pain after a time. Other pain is described as “burning” or “like frostbite” or “shooting” or “lancinating.” For some people the “restless leg syndrome”, often described as legs “jumping” in bed at night, is very distressing because it prevents or interrupts sleep.

People who suffer from pain need to talk about it with their doctors. Only the person who has the pain is the expert in this aspect of the disease! No one can guess what your pain is like, they have to be told. There are no medals for suffering needlessly! Ask your doctor what pain scale he or she uses, and then tell the doctor how you rank your pain at its chronic level and during a more severe attack. Don’t make the mistake of using your daily pain level as the baseline! Compare everything against NO PAIN.

There are many drugs on the market, not just the “usual” pain medications. Doctors can prescribe medications usually used for other diseases that will help with nerve pain and other problems. For example, Sinemet, a drug associated with Parkinson’s disease treatment, is sometimes given for restless leg syndrome. Some types of antidepressant medications have been proven to be valuable in alleviating nerve pain. These medications work on chemicals in the brain that have various effects on the body. Some medicine given to people with epilepsy, anti-convulsants, have also been helpful. Neurontin is an anticonvulsant medication that can be given in small doses and increased to much larger doses with few side effects. Paul Clemow has received relief with this drug, used in combination with others prescribed by his neurologist.

Traditional pain medication continues to be most helpful for many folks. The current treatment of pain emphasizes keeping the pain under control at all times. People used to suffer “as much pain as they could stand” and then take pain medicine. The problem was, the medicine had to be given in large doses to conquer the severe pain. Often people would feel “drugged” in order to relieve the pain, and then the cycle of pain and “drugging” would start over again. Now doctors strive to use low doses of pain medication routinely- every day or several times a day. The person may not be pain free, but does not suffer from the intense “peaks” of pain that require large doses of drugs. Sometimes people are resistant to taking “pain pills” when they don’t have acute pain, but the consistent treatment of pain is much better and safer.

Some people have discovered methods other than medications to provide some pain relief. Gloves to warm the hands and provide a gentle pressure have helped some. Others agree that some kind of pressure to the area, such as clenching the fist, provides short term relief. If you have “tricks” that have worked for you, talk about them or let me know and we will share them with others.