How in the world can a gentle touch feel like pain? This is a question that has come to my mind many time. At times, if someone touches me, even a gentle touch, I somehow feel pain instead of the gentle touch that the person is intending to transmit to me.
I just spent two days researching this subject on the internet. I am amazed at how complicated our sense of touch is. I will try to simplify it from all that I read. Touch stimulates sensors in the deepest layer of our skin, the dermis. This layer of skin is loaded with a huge number of nerve endings. These nerve endings transport the feelings from touch, whether pleasant or painful touch, are converted into electrical signals. The signals then travel through the spinal column to the brain.
One type of pain is called Neuropathic Pain which is caused by abnormalities in this system. The problem can be in the nerves, the spinal cord or the brain. Neuropathic Pain can cause people to feel pain from a stimulus that is not normally painful, such as a light touch or cold temperature. Pain in different areas of the body are sensed in different parts of the brain.
I was not able to find any information about this in any specific way to link it to FTD. However, if the touch/pain signal goes through our brain and that part of our brain is damaged by FTD, it leads to believing how it can be misinterpreted. It would also explain why some of us experience this misinterpretation of touch and others don't. FTD attacks different parts of the brain, in differing order, for each one of us, as we all know.
Another cause can be sensory overload. When we experience this, everything can become painful. I often feel like my entire body is being bitten by fire ants or being touched by stinging nettles when there is too much going on around me, changes in lighting or noise. I think all of us with FTD have experienced this and can understand why our brain will misinterpret a gentle touch as another assault on our bodies.
This also explains one of the reasons people with FTD and other dementias are reluctant to shower or bathe. The feeling of the water is not the same for many of us. The feeling of the water hitting us in the shower can overwhelm us and cause us to feel that we are being attacked. That is why some do better with a shower mounted at shoulder level or a handheld shower head. From what I have heard from others, it can cause feelings of pain no matter where it hits the body, but the head is worse. Personally, it is just getting hit in the face with water than bothers me. I have solved that by taking baths rather than showering.
Of course, the pain or fear of the water hitting the body is not the only reason many with FTD are reluctant to shower. A lot of it comes from our feelings of apathy. If you don't care about others, you may not notice or care that you smell bad or look dirty. On top of that, you don't care if it bothers anyone.
I never understood how bad this aversion to showering or bathing can be. When my husband's Alzheimer's Disease started to h progress rapidly, he developed this same aversion. I have tried all the regularly suggested steps to deal with it: a sturdy shower chair; a shower head that is mounted at shoulder level or can be removed to be handheld; a non-skid surface on the shower floor and a gentle shampoo that does not burn the eyes. I admit that I have even resorted to begging and bribing which has never worked for me.
Now, I realize that if a simple touch on my skin can feel like pain, it certainly makes sense that the shower spray could do the same thing to him. I am still waiting for a magical answer. In the meantime, I am using waterless shampoo and antibacterial disposable wipes to stretch the time between showers. Even this is difficult for him to accept at some times. I should take a moment to tell you about the shampoo "gloves" that I found at CVS online. They are really mitts, not gloves, but they have a gel type product in them that releases as you rub the head. This is the one thing my husband responds well to. He says it is because it feels like I am massaging his head. I am not pushing you to try them, it is just one more item to try until you find something that works for you or your loved one.
I hope I have succeeded in explaining this complicated issue of senses of touch being misinterpreted in an FTD brain. Some days it seems like everything can be affected by FTD. That is one of the reasons it is such a difficult disease to deal with... whether it is the one with the disease or the caregiver. In the meantime, if you see me, please don't touch me!
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