Through the Years

I'm three years old, I have on a great big yellow helmet, ready to ride with Daddy on his motorcycle around the farm. I'm four years old, Daddy has me in his arms, carrying me up the stairs to put me gently in bed. I'm five years old, it's snowing and Daddy is letting me ride his back on the sled down the winding snowy path. I'm ten and Daddy takes me out to work with him, I held the light for a service call or two and then we'd go to Lowes where I would reap the benefits of my "hard work" in the electronics department. I'm 15 and Daddy lets me go on my first date after a lot of persuading and begging! I'm 16 and I'm calling home to tell him, "I'm not going to ever drive this VW again, it won't shift!" only to have him meet me, jump in the passenger side and show me once again how to drive a stick. So many memories...so much care that I didn't realize until now that I'm sharing this.

Lovey, dovey doesn't describe Daddy. Strong and reliable, that's what I think of when I think of him throughout the years. He never showed a lot of affection, but we knew he loved us. When I say us, I'm referring to my brother and me. By the way, my brother bears a striking resemblance to Daddy in his younger years.

Daddy was the one who we were the most fearful of, "Wait till your Daddy gets home." (It can still send a shiver up my spine) The funny thing is I can't remember when Daddy spanked us. I know he did, but I don't remember it. I guess it was the way he handled it. We knew he meant business and so we were remorseful and didn't let it happen again. But I do recall some swinging action in our direction of the backseat of our car; usually at my brother because he had gotten caught. We both knew that I had egged it on, but he was the one who ended up punished most of the time.

Daddy's attire was usually navy pants and his blue shirt with his name on it and the G.E. patch. He worked all of the time! He loved what he did which is why he worked until he was basically unable to a few years ago. Such unfairness, to retire to live like this. My mom and he should be at the beach right now, him watching T.V. and her shopping. That would be fair, but CBGD has ridden him with an unfairness like no other. Instead, his retirement is being spent in rehabilitation, confined to a wheelchair or hospital bed and away from his favorite place, home.

Synonym for CBGD=Unfair

After talking with a dear friend about my mixed emotions concerning my Daddy's disease, I decided to begin blogging to sort out my feelings. I'm hoping this will be good therapy for me.

My dad was diagnosed with CBGD about two years ago after having difficulty with his right hand. CBGD is a lot like Parkinson's but without tremors; at first that is what they thought Daddy had. After doing a series of tests, they came up with this 4 letter acronym standing for Cortico Basal Ganglia Degeneration. This stands for "one side of the brain is going away"; in Daddy's case it was his left side.

He worked for 30+ years as an appliance repair man, one of the best! Daddy had always been one of the strongest men I knew until the past few years. He had his strength, just not control. For example, he was holding a salt shaker and his hand opened and it dropped to the table. He couldn't control it. This is how this dreaded disease works. It takes what you can use and makes it unusable (if that's a word). He began to hold his right hand to his chest because he couldn't use it. Eventually this hand would be clinched and frozen to his chest, almost immobile. His legs would begin to slow down too. He walked slow, slower and the last time he walked, he broke his hip and hasn't walked since.

For the past two years we have gone to many different doctors. We've been to a Neuro-Movement Specialist at Duke, who the last time told him, "There's nothing more I can do." What he didn't realize was Daddy wasn't going to give up! He continued to search and search for something, anything to make him better. He even saw a Discovery Channel Health Show that explained a brain surgery performed to Parkinson's Patients that helped. "I want to do that." he said to me. What Daddy didn't understand was this surgery was performed to stop the tremors, not stop the Parkinson's. In other words, it would do nothing to help his disease. Soon, we were on the way to the Veteran's Hospital. Off to Salem, Virginia we went, only to be put back on the same page...nothing. This doctor did perform a brain scan which showed the white matter in his brain was shrinking. Just another dead end. On the way home, he mentioned going to Wake Forest...we haven't made it there...yet.

Daddy has had a lot of pain through this, mainly in his back. He's been to a Pain Specialist to have injections in his spine, but the last one didn't help. We have been blessed though, because Daddy's mind still remains much in tact. He has the memory of an elephant! He has had some OCD tendencies which I've learned are par for the course with this disease. Unfortunately, Moma has had to endure this the most plus my brother, who has been Mr. Fixit for the past year and half.

These symptoms sound awful, but the absolute worst...loss of speech. Daddy knows what he wants to say, only his brain won't allow the connection to his mouth. When he struggles for a word, inside I'm screaming, "Please let him say it! Please let him say it!" This has been the hardest for him. He will sometimes just give up when trying to tell me something or he'll just stop and say, "I don't know." He knows, believe me! He just can't get those words to come out. I cannot imagine how helpless he feels when this happens. I know how frustrated I feel.

Now that you have a window into our life with Daddy and this terrible disease, I will stop for today.

CBGD is a True Four Letter Word!