My husband and I celebrated our 20th wedding anniversary on New Year's Eve. It hasn't always been easy, but we've made it when pretty much everyone else thought we were doomed for failure. You see, Dale and I knew each other a grand total of 30 days when we got married. If we were talking about some other couple, I would probably be at the front of the line, saying, "Are you CRAZY! There is no way this will work, and you are making the biggest mistake of your life!". But somehow, against the odds we have survived together.
About twelve years ago, Dale started having problems with his legs. He complained that he was loosing the feeling in them and that it felt like there were helium balloons attached to his feet when he was walking. We didn't think too much of it at the time, but then Dale started falling occasionally. The falls began to increase in frequency, and I insisted that Dale see the doctor, who said he thought it was peripheral neuropathy, and that we would just keep an eye on things.
Not long after this, Dale developed a severe migraine type headache. He kept telling me that he really didn't feel good, but wouldn't go to the emergency room. Within a few hours, Dale's speech became impossible to understand. He was showing all the signs of a stroke and I called an ambulance. Once at the hospital, a battery of tests were run and Dale was admitted. The doctor's told us that he had had a mild stroke. Dale was having problems with both fine and gross motor control and with his speech. He was also having trouble swallowing. We worked with speech therapy, physical therapy, and occupational therapy, and he was soon able to return home.
Dale's legs continued to get progressively worse, and pretty soon, he couldn't walk at all. That's when we got his first wheel chair. For a man who spent 14 years in the army, and who had worked hard his entire life, that wheelchair was an admission of failure to Dale, and he got very depressed from it. I let him have time to grieve what he had lost, and then the tough love kicked in. I told him that feeling sorry for himself wasn't going to change things, and that he could learn to accept that he was the still the person I fell in love with, despite the chair, or he could sit there and feel sorry for himself all alone. Pretty soon, he came to grips with this new part of his life.
As time went on, Dale had what we thought were six more strokes. I learned to watch the signs and symptoms, and I knew when one was coming on before he did. About two years ago, he had another one, and our small hospital here wasn't equipped to deal with it. They sent him to one of the large hospitals in Louisville. We were in for a lot of surprises!
The neurologist assigned to Dale's case did a thorough work up, including CT scans and MRI's. Dr. Frank came in with the results and informed us that Dale had not had a stroke, and in fact, had never had a stroke! We were dumbstruck! Dr. Frank explained that Dale had a hereditary condition called Spino-Cerebellar Ataxia. Neither of us had ever heard of this condition before. Dr. Frank explained that it usually hits in the later 30's or early 40's, which is exactly when Dale started having his problems. In this condition, the cerebellum starts to slowly disintegrate. This is the part of the brain that controls coordination, and this is why Dale lost the ability to walk, had the speech and eating problems, and was loosing his fine motor control. The disease is progressive and there is no cure.
I asked Dr. Frank why it has taken so long for us to get the right diagnosis, and why other doctor's kept telling us that it was strokes. Dr. Frank told us that the condition is pretty rare, and most doctor's don't look for it. The simply see the symptoms which look like stroke symptoms so that's what they call it. Because the disease is hereditary, there is a 50/50 change that our sons will have it as well. When they are a little older, we will have them tested to see if they carry the gene.
So far, I am able to take care of Dale at home, although it isn't always easy. Luckily, he is still able to transfer in and out of his chair by himself. If he has something to hold onto, Dale can even stand, but he cannot take steps. Writing even his name has become almost impossible for him, and he has to use a pen that is thicker than normal. The speech problems come and go, and when it is bad, I can usually understand him. Unfortunately, other people usually can't. One day, Dale had to call our insurance agency. He was having one of his bad speech days, and the person on the other end of the phone hung up on him. But as she was hanging up, she said that it was just some old drunk. I called them back and gave them a big piece of my mind!
It's not easy watching this disease slowly take away the man I married, and I am terrified at the thought of my boys having to go through this. I know that there will come a time when I have to put my husband in a nursing home. Because of my health issues, I will not be able to give him the care that he needs, and this just breaks my heart. It isn't easy, but Dale and I take care of each other.
I live on both sides of the chronic illness issue. I am both a sufferer of chronic pain, and a caregiver to another person with a chronic illness. When I hear other people dealing with a chronic illness say that their significant other left them because they couldn't deal with what is going on, it just makes me furious. I don't understand walking out on someone you love, just because the going gets rough. Dale and I made promises to one another when we married to be there for better or worse, in sickness and in health. We have honored these vows, even though sometimes we both think it would be easier to walk away. No matter how sick Dale gets, he knows that he will always have me to lean on, and I know that I always have him. And my heart breaks for those who don't have the love and support that I do.
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