Husband's last camping trip

Husband's last camping trip

Tuesday, February 21, 2012


Quiet. I love the early mornings. It's my time. I like to reflect on what the previous days have been, what today will be and, what tomorrow will bring.

For the last two weeks, I have witnessed husband decline faster than before. I am so glad I insisted on him using the walker. My gosh, he just cannot walk without it. His legs, when he walks, do not leave the ground, he drags them along. Both legs are now very stiff. When getting into the car, he has to lift each leg in.

Seizure activity is on a regular basis, all day, all night now. Even with the strength of drugs he is on, morning and night, it does not stop them all together. Thankful for the drugs, imagine it would be worse without them. These drugs are what's keeping him alive right now. Otherwise, the seizures would stop his heart.

Memory continues to be a constant struggle for him. One minute, he knows what day it is, the next, he doesn't know where he is. That blank, haunting look in his eyes is constant now. He sees, yet, he doesn't see. When he looks at you, those once beautiful brown eyes are now a dull brown, and shows no recognition, even with me. He will have a conversation with you, but, it's all one sided. He will nod his head while you are talking, but I can tell it's not registering with him.

His greatest fear to date is the swallowing issue. His reflexes are shutting down, so, I have been cooking softer foods for him. Easier for him to chew and swallow. I have watched him eat. It's slow and deliberate. He has to concentrate on chewing, then, swallow.

I will call the Dr tomorrow. He wanted me to call him in 4 weeks to give him an update on husband. 4 weeks will be tomorrow. We are also waiting for the genetics testing results to come in. We've got 4 weeks down, 2-4 more weeks to go. I am anxious about the results. We all know what he has, but, because of the rarity of this disease, the Dr wants to pinpoint this deadly disease. Also, because I will not agree to Autopsy, the genetics test will tell the story. This waiting can be hard at times. I try not to think about it.

This is where we are at, today. Basically an update on husband's condition. I can sometimes surprise myself when I read back what I just typed. I have learned so much medical terminology the last 2 years. Why, some of those long words just roll off my tongue nowadays. Never thought I would be in this situation. Course, we always think it will happen to someone else, certainly not our family. Then, the unthinkable happens.

I liken this disease to being punched in the gut. Just when you think you've got a handle on the situation, you get punched again, and again.

I don't like this, no I don't.

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