Historically, Thanksgiving Day has been my favorite holiday. It came with no baggage. No obligatory gifts, no religious dictates, no fireworks, and no memorials. It was a day to count my blessings. A day to focus on the good in my life, eat lots of comfort food, and spend the afternoon with family. It was a day to be thankful for.
One of the symptoms of CBGD is "social withdrawal." To analyze the reasoning behind the symptom is difficult because there is always the possibility that any psychological symptom may be caused by the, very real, degeneration of my brain. I think not.
Having led a life rooted in athleticism, I find my seemingly sudden frailty to be humiliating.
Eating is a particularly embarrassing thing to have to do in front of people. While eating should be a mindless task, it has become a slow, laborious endeavour that becomes more difficult if I believe I am being watched.
Last year's Thanksgiving was eventful in that I passed the carving-of-the-turkey on to my son. I fear that another year from now might mean someone feeding me at the head of the table. I don't think I can do that.
So you see, "social withdrawal" has its roots in the loss of dignity that permeates this disease.
Too much pride may not be a good thing, but its loss is deadly.
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Are you writing a book about this? I imagine that it's difficult even to write the blog. Perhaps someone in your family. . . Or perhaps me. Of course I'd need to know much more. But your honesty, experience, and your courage to share are amazing and I really think your story can help a lot of people.
ReplyDeleteOf course, you aren't obliged to help others through your suffering, but I hope you choose to. I would be honored to help in any way.
I always read your blog in the middle of the night when I cannot sleep because my mind is worrying about my mother and the progression of her disease. I find comfort in your words. Do not worry about loss of dignity or social withdrawal. More important, never let feelings of loss of dignity lead to social withdrawal. About the only thing my mother can now do for herself is feed herself. It's not pretty, but who the hell cares? She gets out to the movies, to church, to get her hair done, to dinner. She goes to grandchildren's volleyball and soccer games. It's interesting because transfers are very difficult right now, and a caregiver agency I have for her doesn't want any new caregivers to take her out. I told them that I'd rather have my mother live her life than worry about being ``safe.'' She needs to live life and get out. What kind of life is it to sit in a chair in her room watching TV all day? She has always liked getting out. I know you read about social withdrawal with the disease, but I can tell that you have an adventurous spirit that this disease will not beat down. So don't ever let a loss of dignity get you down and keep you from doing what you want to do. You may feel that those around you are watching you, but those who love you do not care. Liz
ReplyDeleteOh CW... I can't even imagine your heartache and sadness... and that of 'Superwoman'. :(
ReplyDeleteI'm at a loss for words, but I like what Elizabeth said.
When you're with FAMILY and/or JESUS, is that considered 'socializing'??
Elizabeth, I feel for you...
ReplyDeleteDo you know about the weapons available that might fend off this disease?
If CBD is caused by "mitochondrial dysfunction", look for things that might help with that.
If CBD involves "glucose hypometabolism", search for things to help with that.
If CBD exhibits abnormal accumulation of iron, look for Iron Accumulation in Parkinsonian Syndromes.
If deficiencies of vitamin B12 can cause conditions mimicking CBD, then look for Could It Be B12?: An Epidemic of Misdiagnoses.
If CBD results in abnormal aggregations of tau proteins, look for Tau Busters.
If CBS might be caused in one out of four cases by Alzheimer's disease pathology, then look for Medications/Treatments for Alzheimer's and Other Related Dementias.
First you must believe that it can be, then you will look. If you do not believe, you will not look, and random chance is not in your favor. There are more things in heaven and earth than are dreamt of in your philosophy.
PC,
ReplyDeleteI've read your anecdotal research and it is missing a key element. The Scientific Method. You must eliminate the variables.
Hi, I just started reading your blog recently...like within the past couple days.
ReplyDeleteI wondered something...
Today in my neuroscience class we had a guest speaker with Parkinson's who has deep brain stimulation electrodes implanted between the thalamus and subthalamic nucleus...that's part of the basal ganglia, right? With that, and dopaminergic medications to make the best use of what is left of the substantia nigra, he is able to lead a better life without the extreme bradykinesia and muscle stiffness and such.
Could something like deep brain stimulation help you?
How did neurologists tease apart CBGD from Parkinson's? They seem similar, but I don't know a whole lot about CBGD.
And like, in Parkinson's, the substantia nigra lessens up to 80% by the time they're diagnosed, so that's degeneration of a basal ganglia structure also, so how can doctors know the difference? Or that the diseases aren't just subtypes of each other? Is the treatment different?
I hope my inferences aren't overwhelming, I'm just interested in learning about these things.
In regard to your actual post: I'm really sorry it's so difficult for you. I hope you're able to find a sense of peace and connectedness while spending time with your family over the holiday. I understand a bit about how difficult things can be. Today the speaker in my class started crying when he was talking about how his life had changed. I was afraid I would cry too; I had to force myself not to.
Stay strong, this all must be quite scary.
If it's any consolation, I'm sure your family views it differently although you feel like you're losing your dignity.
would deep brain stimulation help.since cbgd cant be properly diagnosed till after death surely everything is worth trying
ReplyDeleteI wonder if you would contact me if you are even in the teensiest bit interested in having yours be one of a handful of stories aout people who are facing death through a degenerative disease. I'd be happy to explain m y personal interest as well as you with a list of publications, etc. What ever credentials you'd like to see. It would be so helpful. I'd be thrilled to come and interview you, your family, co-workers, etc. You can contact me via my profile on this blog site.
ReplyDeleteGo happy.
Fay Campbell, Fay's of Life
Fay,
ReplyDeleteI am flattered. If my blog has a purpose it would be to give voice to words I cannot speak. It might be that, moving forward, I could use some help.
I have followed your blog and I feel for you. My mother was diagnosed with cbgd 2 years ago. She is 79yrs old. She has gone from walking with a walker to lying in a care home bed unable to feed herself. Her speech is very slurred, but she still knows whats going on. My dad has parkinsons but has not declined nearly as fast as she has. He was diagnosed about 10 yrs. ago.
ReplyDeleteLet me know what I can do. I really think it's important. AND I don't think you should feel obligated. (sorry, I'm a psychotherapist. can't help the AND statements)
ReplyDeleteHI Bob,, we had our first snowfall, about 4", so it is a wonderful winter snowland.We went to Decorah for thanksgiving, the hill going to Mom's was treacherous,,remember that steep hill, i worry about them always going up and down that hill. But I made it up , We will also head there for xmas. kel is doing fine, he continues to have problems with diarrhea, and i worry about him getting dehydrated. Did i tell you he got his hair cut, so glad,much more manageable for him. My boss gave me the tickets for the Badger basketball game againste North carolina,. Kel really has to be careful with the stairs, he easily misses one , do you find your perception is off with steps?? Bob , you have so much to offer people, thanks for your blog. I really believe after meeting you, that your friends see past the CBD, so try to let go of the "dignity" and the embarrassment that you feel, as i know Kel feels that too, and people seriously want to help , like buttoning your coat, and carrying your plate, or cutting up your food.. if you can just let it go..i am trying to teach Kel to just let that go, we are here for you . Hope your xmas holiday is good. Thinking of you and superwoman. Karla
ReplyDelete