Linda has had seizures some birth.
I have probably seen her have thousands of seizures and have seen her go to doctor after doctor with hopes that something new, something, just anything is going to give her a chance to live a life not defined by seizures.
Linda has what doctors call refractory epilepsy. She is in that 1-2 percent that doctors say will never have seizures under control by medication. She has been hurt countless times in seizures: everything from cuts and bruises to concussions to broken bones. In one seizure she literally broke her face. She fell down a flight of stairs and hit her face on a banister. Linda has never had “just epilepsy.”. For her it has been an assault that has affected virtually every facet of her life.
At its very worst a good day was 10-15 grand Mal seizures. In desperation doctors told her she needed to have brain surgery or she would die or soon no longer be able to care for herself.
She had the surgery and a good day is no longer 10-15 grand Mal seizures. She came out of the surgery with a host of disabilities she never had before the surgery and still had seizures but they are not what they once were. They still though provide the context for much of her life.
She has learned about CBD oil and there is reason to hope it can make a difference. It is not legal to sell in Tennessee but she can get it over the internet. It just costs and for us it costs a lot. For $60 she can get enough to last two weeks used sparingly but it is far less than needed and only gives a hint of what it possibly might do.
For Tennessee to make it legal, to allow doctors to prescribe it…. to bring it into reach for ordinary people would be a life saver for Linda.
I have seen her take virtually every seizure medication known to man. All are heavy duty drugs. A neurologist, in an unguarded moment once, told me “they are all poison. It is just all we have found that stops the seizures.” Some have helped. Some seem like they do little. Some have seemed like they made things worse. I have seen her struggle with the side effects of medicines that disrupt life as much as the seizures. You wonder how much quality of life you have to lose to finally get seizure control.
I saw one medication destroy her teeth. When she finally stopped it she also lost 80 pounds also a gift from the medication.
All the medicine is powerfully sedating and with the sedating effect of the seizures themselves Linda is always having to find energy to do things that some people might not see as a big deal. In very profound and concrete ways each day is combat. And my wife is a gifted warrior.
Some medications affects mood and clarity of thought. They call Topamax dopamax because it so frequently leaves those that take it in a fog.
If you try to get off many of these medications it can be brutal. Linda takes Lamictal which is very expensive. Going off Lamictal cold turkey can put your life in danger. At one point the state of Tennessee decided to stop paying for it. She was facing cold turkey withdrawal. We literally went to the state legislature to make sure it stayed covered.
Sleep is a big part of the health of anyone with epilepsy. A doctor prescribed ambien at high doses. It is supposed to be a short term drug and especially dangerous for women. Linda took it for 20 years. No doctor raised the alarm. Finally she did. The withdrawal was hell.
Another doctor prescribed Ativan to interrupt seizures and to keep one seizure from becoming two or three. It did help but she has been on it 30 years. Again the side effects are real. One thing that happens is you lose your grasp. Endless plates and glasses have been dropped. The other effects are more dangerous. People are not built to take benzos for 30 years.
We have been separated now for going on five years. The story was recently told by CNN. https://www.facebook.com/LoveStoryCNN/videos/144048312854694/.
There is little we can do it seems. For us life has become equal parts tragedy and danger. Her medical condition continues to get worse and worse. Seizures are more and more a problem. It is just plain dangerous. She falls a lot. Balance is a real problem. Lights, especially fluorescent lights, can trigger seizures and frequently do. She can be very sensitive to noise and anything that startles her can trigger seizures. Because of our separation she is frequently isolated and alone. Sometimes headaches are with her all day. Sleep is not always a given and with her neurology it is sometimes hard for her to organize her life. It is getting harder and harder and the potential for tragedy is real.
Her neurologist says it simply. “She doesn’t need to be living alone.” When I asked Social Security if I could be her caretaker they told me that would be viewed as fraud.
We are trying to do things to make it better. We hope a move is coming so we can be closer. Still a lot of hurdles there though. But trying.
Access to CBD oil would make a difference. Everything I have read. Everything I have researched says so and the results Linda has had with a little bit of CBD sure give promise to what an adequate supply could do.
My wife is a great person. She is kind to a fault and dedicated to making life better for those around her. She deserves a chance and this is not it. If you live in Tennessee we ask you to join us in raising the call for the legalization of medical marijuana. Many folks have been trying for years and both Linda and I intend to add our voices to that fight.
So many have lent support in so many ways. This is an issue so often drowned out in the flood of things that confront us. Please raise your voice. It is hope for many that have none. Please help.