The neurosurgeons tried to clean up the bullet fragments from her brain. After this surgery, unfortunately, she got a stroke that damaged the right part of her brain. Specific areas of the brain control both movements and sensation in our body. When this lady’s right brain was damaged, it was the left side of her body that got paralyzed. So, here she was, blind, brain damaged and paralyzed in one side, which left her totally dependent on others for everything. But the tragic story did not finish here. Shortly after the stroke she started complaining bitterly (whichever way she could, with some words, sounds or body jerks) of pain across the whole left paralyzed side.
The sister told me that the nursing home staff cannot understand that even touching her in the left side is very painful. Moving her from chair to bed and vice versa was an ordeal, and the staff (inpatient, untrained and not educated in her condition) let her and the relatives know that probably this “was all in her head”. They were absolutely right, it was all in her head, but to be correct, not the way they meant it (as a “figment of her imagination”). This unfortunate lady had suffered a serious and very difficult to treat neuropathic pain syndrome seen in about 8% of all people with stroke, that we call “central post stroke pain syndrome”. In cases of brain damage some people develop serious burning, stabbing and shooting pain in the paralyzed body side and cannot tolerate mere touch or movement. When I examined my patient with a soft feathery make up brush (the way I have to test the sensation of light touch), she found it very painful.
Over the years she had been able to recover her ability to speak and respond to questions, so she told me clearly how uncomfortable my little brush felt on her skin. Touching her with a sharp pointy object (another way of testing skin sensation) was even worse, while the slightest movement of her paralyzed side (which I tried to do myself holding her hand) was unbearable. Her toenails on that left leg were the proof of her inability to tolerate the slightest touch or movement. They were very long (only the sister with great effort and gentleness could trim them from time to time) and the skin over the toes dry and scaly as water on the skin was not tolerated. I had to make some very specific recommendations in regards to medication use. Probably my most important contribution to this lady’s care was a scalding note to the nursing home indicating what the diagnosis is with advice to handle her very gently and stressing “this was in her head, but in her brain”! Why did I tell you all this? Simply to show you that pain in institutionalized settings in a huge issue, untreated and poorly understood for people who are seriously physically impaired and/or have reduced cognitive capacity or ability to communicate. This goes as well for young kids with cognitive impairment but I am not a kids’ pain doctor, so I leave this to specialists in pediatric pain. If you recall, in a previous paper I discussed pain in older persons. To refresh your memory, Stats Canada (Statistics Canada “Chronic pain in Canadian seniors”) told us that in institutionalized seniors, only incontinence, arthritis and Alzheimer’s disease were more common than chronic pain, which affects close to 4 people out of every 10. Soon, you will be asked to inform CARP Advocacy, what you feel the impact of chronic pain is on you or your loved ones. I will ask you to respond to the questions. We need your answers, so that we can make your collective voice known and inform those in power how desperately we need the system to change and improve. Chronic pain is a huge problem in our society. We simply cannot afford to continue ignoring it wishing it goes away … because it won’t!
