Cortico-Basal Ganglion Degeneration, Mom and Me
I’ve never been very close to my mom. I suspect there are multiple reasons for this, some of which were visited upon her by the sins of her mother and her mother’s mother. Consequently, we’ve never been buds. Now I’m working hard to be a good mom.
I’ve never really corresponded with my mom. Her idea of a letter was to clip an “Ann Landers” column and send it to me with a one-line note. My idea of correspondence was to shove a Christmas card into a box of packages waiting to be mailed. Now I send my adult kids one-line emails. That needs to improve.
I’ve never liked the things my mom likes. She’s crazy about jewelry; for me it’s one more thing to think about when getting dressed. But when my dad divorced her, she sent me her West Point miniature engagement ring, and her wedding band. Now that’s something I liked to receive.
I’ll never fully understood my mom. I’m a singleton and she’s an identical twin. It seems identical twins can’t “leave and cleave,” since they’ve been “married” since the womb. My dad once said “never marry and identical twin – you can’t compete.” Now I’m raising identical twin girls. I hope I raise girls who don’t visit this sin upon future husbands.
I’ve never lived close to my mom since leaving for college at 18. And I’ve never returned to the nest, except for occasional visits for Christmas. After we had five kids, my mom came to us, about once a year, or once a birth, whichever came first. She was a big help, especially with the twins. Now she’s lives 20 miles away at assisted care. That’s close.
I’ve never talked on the phone much with my mom. She would call once every two months whether I needed it or not. I would call in the intervening time, mostly out of guilt. When we talked, I controlled the conversation by my rude behavior, telling her I’d heard her stories before. Now I’m very aware of how my daughters and I communicate.
I’ve never been as brave as my mom. She’s dying an agonizing death in which she knows what’s happening to her, symptom by symptom. Her “death by brain loss,” is like being fully aware that you have Alzheimer’s Disease, and are trapped in the body it produces without the resulting memory loss. Now I think about the treasure of good health and a sound mind.
I’ve never been fully sympathetic to my mom’s plight, even though I’ve been fully aware of her disease progression. Now she has every horrible effect the disease produces. I’ve been told she’ll die in less than a year. I’ve just enrolled her in hospice. This is CBGD:
Cortico-Basal Degeneration by Dr. Basil Ridha, Dementia Research Group
This is a rare progressive neurological disease that causes disturbance of mental processes and motor skills. The disease is named after the areas of the brain that are principally affected. Cortico refers to the cortex, which is the outer layer of the brain, and basal refers to the basal ganglia, which are deep structures in the brain that control motor skills. In these brain regions, there is more significant loss of brain cells than in normal aging. Corticobasal degeneration can present in many ways. It can affect mental processes such a memory, vision perception, speech, organizational skills, personality and behavior. It can also affect motor skills causing rigidity, tremor, clumsiness, limitation of eye movements, involuntary movements, odd posturing of limbs and difficulty walking. A specific symptom that may be present in corticobasal degeneration patients is the ‘alien limb’, where a limb seems to move without control in a mind of its own. In all these movement abnormalities, one side of the body is affected more than the other.
National Institute of Neurological Disorders and Stroke:
There is no treatment available to slow the course of corticobasal degeneration, and the symptoms of the disease are generally resistant to therapy.
I’ve been whining about my mom lately. She’s frustrated and confused. She’s irritable and depressed. She’s yelling at her caretakers and cussing at them. She’s belligerent. When she laughs she chokes. When she cries she chokes. She’s incontinent. She’s very large and hard to manage. Her money is paying for caretakers. Now I eat with her twice a week and play dominoes. My role is small.
I’ve also had an incurable disease. My mom’s known it all along.
I’ve been a baby – my mom’s baby. I was large and incontinent. I didn’t walk until I was 18 months old and weighed 36 pounds. My mother carried me, changed me, and loved me. Now others are doing that for her.
I’ve been a druggie. Just like CBGD, that can affect mental processes such a memory, vision perception, speech, organizational skills, personality and behavior. It can also affect motor skills causing clumsiness, involuntary movements, odd posturing, and difficulty walking. I was frustrated and confused. I was irritable and depressed. My mom never stopped caring for me, cooking for me, or loving me. Since I straightened out 35 years ago, she’s never reminded me of my past. Now she tells me she’s proud of me and that I’m the daughter she always wanted.
I’ve been belligerent. In the days of my horrible disease, I yelled at my mom and cussed at her. There were no paid helpers during that sickly time of my life, just my mom. I was incapable of fixing myself, and there was no cure. My mom provided my assisted care. Her role was large. Now I’m grateful.
I’ve been cured. My disease had a shorter name than CBGD. It was S-I-N, and I nursed it for 30 years, until I met the great physician, healer, comforter, counselor, and friend. This doctor, Jesus Christ, not only healed me, but He forgave me, and gave me a new life. I introduced my mom to Him several months ago. Now it’s time for me to be close to my mom, the one who gave me life, before it’s too late.



Thank you for sharing your story, Anne. I will pray for your mom, that God will protect her remaining time, and allow it to be peaceful. I will pray for you, that God will carry you through the coming months. And I will pray that you will experience the closeness in these closing months of her life that you both have longed for.
Let me know if I can do anything. In the meantime, I’m on my knees for you.
–r
Anne,
That was beautiful.
-H
Anne,
I hope you find comfort from being there for your Mom now. My Dad also has CBGD and it really hurts to see this disease take over their body and soul.
Thanks for sharing your story.
Rajj
I am happy that you’ve gotten to the place you are but saddened to know that my family will have to endure your heartache. I have recently been diagnosed with CBGD. I am trying to quickly get my affairs in order while I still can. If there was something you wished your mother had done before now that she can’t now do, what would that be?
Thanks, and God bless.
Beautiful story..glad you found your way back to your mom and became close again before its too late. A Mothers love is like no other !
My mom also has CBGD…it has been 13 long yrs, she is still hanging on. It has been a rough road. I wish you and your family the best. Thanks for sharing.
Thanks Donna — it was hard to write. I cried through the whole thing. My mom is now in a nursing home. Her twin died in March. She continues to fight, much like your mom. Since I wrote the article, I feel even closer to her. It’s been a growing experience for me. Thanks so much for commenting and mostly for relating.
Thank you for this account. My mom was recently diagnosed with CBD and we are both pretty scared. I’ve read alot of frightening stories. I am hopeful my mom’s will be different. How is your mom doing today? I wish you luck and blessings.
Dear Friends,
After an 8-year battle with the disease, my mom, Ollie, died on September 20, 2009. As she was going, her hands were unclenching. It was so nice to see her hands again. Her last words to me were the sweetest “I Love You” I have ever heard. She’s now free from pain and the confines of her body. My prayers are with those of you still in the fight.
That was a beautiful story. We just lost my mother in law yesterday to this disease. It was more suffering than I’ve ever seen anyone go through in my life. She was 69. He husband is devastated. He took care of her to the end.
Thank you for sharing. I believe that is how God would have us see things too!
Anne,
Thank you for sharing, I cannot tell you how much I can relate to your and your mom’s story, amazing. My mom has passed and the one thing that I remember the most was how her hands were able to start un-clenching once she was at the hospice center. How wonderful that was to see and also to know that her body was no longer in pain. No one should ever have to endure such pain as this disease inflicts. Funding research is the key to cures.
Thank you so much for your story. My husband has CBGD, and has reached the point where he is beginning to have a tremor in his left hand, has difficulty speaking at times, falls from time to time because of the shuffling walk, has to have assistance with dressing and sometimes with eating. I had planned to retire on my 65th birthday in 2011, but suspect we don’t have that long to travel and do things we can enjoy together, so am preparing to quit my job and be with him over the next year. Your faith in Christ, as with us, is a foundation you can’t match. We started noticing symptoms about 4-5 years ago, slight at first, so have been trying to speculate as to the progression and time frame. Now, it doesn’t matter. What matters is that God has given us provision to live over the next year without me working. When he goes, I know he will be with the Lord.
Dorothy,
You will never regret the time you devoted to his care. I am so thankful with you that your lives are built on the rock of faith in Jesus Christ. Our hope and future is sealed in eternity. Blessings to you and your husband.