Tonja's Gatherings - A Christian Blogger from Dothan, AL
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Tonja's Gatherings - A Christian Blogger from Dothan, AL
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CEREBELLAR ATROPHY AND ALEX

October 21, 2007 by tonja 1 Comment

SYMPTOMS The most characteristic symptom of cerebellar degeneration is a wide-legged, unsteady, lurching walk, usually accompanied by a back and forth tremor in the trunk of the body. Other symptoms include slow, unsteady and jerky movement of the arms or legs, slowed and slurred speech, and nystagmus — rapid, small movements of the eyes.
WHAT IS IT?
Cerebellar degeneration is a disease process in which neurons in the cerebellum – the area of the brain that controls muscle coordination and balance – deteriorate and die. Diseases that cause cerebellar degeneration can also involve areas of the brain that connect the cerebellum to the spinal cord, such as the medulla oblongata, the cerebral cortex, and the brain stem. Cerebellar degeneration is most often the result of inherited genetic mutations that alter the normal production of specific proteins that are necessary for the survival of neurons.
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The severe pain that Alex experiences is not usually a condition associated with Cerebellar Atrophy. We do not know , and doctors can not pinpoint why he is having such pain. He does have the issue of migraine, but that pain is differentiated from the constant pain that is unrelenting.
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Alex was the easiest to raise of my 3 boys. This was due to his pleasant disposition and eagerness to please. He enjoyed reading and never minded playing alone. He could entertain himself for hours. He never was as agile and quick as his brothers, and he sometimes seemed a little clumsy, but there was never any noticeable problem that would cause any concern. He began having migraines at about age 4, and we found that his vision was very poor and he was wearing glasses at age 5. There was some concern, I remember, that the doctors were unable to properly correct his vision to 20/20 with glasses, but they did not seem too concerned about that.
One day, when he was in the 8th grade, one of his teachers called me and said I needed to come to the school and pick up Alex. She said that he was bumping into things and said he was seeing double. He was not complaining at all when he went to school. I picked him up and went directly to his pediatrician, who sent us straight to the hospital for a CT scan. Nothing showed up. The next day we were in Birmingham, at Children’s hospital for an MRI. This is when the damage showed up. The doctor said that part of his cerebellum was gone. He said he must have had a severe infection or virus to cause it. Then he sent us home. Nothing else…just…go home. We did, and the next morning I was back in the pediatrician’s office…asking “what now?” He could not walk with out aide and could not see because of double vision. Our Dr. here sent us back to Birmingham. We went first to a pediatric opthamologists, who fixed prisms for his glasses so he could see better. Then, we went back to CHA, and saw a different neurologist who explained a little about the process of cerebellar degeneration or atrophy. He gave us a medicine to try to help alleviate the symptoms, but it did not help.

This was the beginning of our nightmare. Our doctor here found the leading specialist in Cerebellar Atrophy, and sent us to see him. He was at the University of Michigan. We found out the most info here. They did a battery of tests here that told us more of what we were dealing with. We learned what to look for and what to expect. We were told that the disease could progress, or could stop where it was. It could go into remission for a while, only to start up again later. But, no treatment.

At first, Alex was able to continue with school, but soon the pain began to get so bad, he could not keep up. He tired easily and there was another problem with his eyes. He began having nystagmus, which is a constant jumping of the eye. He began having trouble seeing and reading.

We went to a pediatric pain specialist in Boston, who came highly recommended. He did many tests and finally told Alex there was nothing he could do. When Alex mentioned how bad his eyes were, he suggested we see a friend of his who happened to be an opthamologist. We went the next day, and for the first time, he and his associate were able to make some glasses that enabled Alex to have decent vision again. He said he had only seen this kind of nystagmus one other time in his practice. It is extremely rare.

We saw a doctor at the University of Mississippi who is a researcher into cerebellar atrophy. He began testing Alex for all the differing causes of the condition. Every test turned up negative. This led him to believe that we were not dealing with an inherited type, but just a gene mutation. Not that that is any better. We still do not know why or what the exact cause is.

So, our life consists of Alex seeing a pain management specialist who tries to keep him comfortable with narcotics. If we hear of any possibility of treatment, we seek it out. We have gone to doctors all across this country. But, no one knows enough to help. They all send us away, and can do nothing. But, still we search, and we will continue to search. We will continue to track down every lead. And, Lord willing, we will find some help for him.

As a matter of clarification…it is the severe pain that keeps Alex totally homebound. Even though he has to walk with the aide of a cane, he is not handicapped by this enough to be a shut in. He would love to further his education, he would love to be able to just get out and go to the bookstore. He is incapacitated by the level of pain that he faces everyday…unrelenting and constant.

We pray…we deal daily…we wait on God.

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PICTURE INFORMATION

October 20, 2007 by tonja No Comments

Well, I have already had several friends contact me about the picture on the front of the book I recommended. I knew a little about it, but I tracked down ‘the rest of the story.’ This picture was made in 1985 and was called simply AFGHAN GIRL. It was on the cover of National Geographic. To read the rest of this interesting account go to the website below. I tried to link to it, but it’s just not happenin’. There you will see her as she is today. Those eyes…aren’t they amazing?

www.nationalgeographic.com/ngm/afghangirl/

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I RECOMMEND…#1

October 20, 2007 by tonja No Comments

This is a book that I bought recently for a Christmas gift. And, actually, I gave one to my Mom last year, too. The title is PORTRAITS by Steve McCurry, a photographer for National Geographic. He says, in the foreword, “In PORTRAITS I look for the unguarded moment, the essential soul peeking out, experience etched on a person’s face…For me, the portraits in this book speak a desire for human connection, a desire so strong that people who know they will never see me again open themselves to the camera, all in the hope that at the other end someone will be watching…someone who will laugh or suffer with them……From an outpouring of pictures over 20 years, these are the faces I cannot forget.”

Friends, this is an awesome book. There are young faces and old…beautiful and ugly…rich and poor….happy and sad. But on them all, you see that “unguarded moment” where humanity peeked out. You can almost FEEL what they are feeling at the moment.

If you have someone on your gift list who appreciates beauty, who loves to travel, who can look at a picture and see something deeper…this is the book for them. The only place I have ever seen this book is at World Market, and it sells for $19.95.

(I beg the forgiveness of my photographer son who would have most certainly been able to get this picture without the sunspot…but alas, he’s off shooting a wedding.)
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FIRST in a series of recommendations for gifts you may not have thought of. I shop all year for Christmas, and I love it when I find the PERFECT gift for someone.

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CHRISTMAS SPIRIT AWARD

October 18, 2007 by tonja No Comments

“It’s beginning to look a lot like Christmas”…and I love it. Christmas is such a wonderful time of year, isn’t it? We all seem to be a little closer to who we should be all year.

My friend, Kat, has started my Christmas celebrating off with a bang. She has awarded me with a Christmas Spirit Award. Thanks, Kat. I am so honored.

The SPIRIT OF CHRISTMAS AWARD: What exactly is this award? Quite simply, it is for those who have a generous and giving nature. Those who care about others. Those who have a kind word to say or a broad shoulder to lean on when others need that. Pass it along to those wo have touched your heart with their kind and giving and caring nature.

And, so I will pass this award along to Angie at With Faith…Angie and Nancy Grayce at Too Wonderful For Me. Merry Christmas, Ladies! Go here to get the code for award.

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WHERE HAVE ALL THE LITTLE GIRL’S GONE?

October 17, 2007 by tonja No Comments

Today my friend, Kat, posted a video on her blog. It is something you should see. Go ahead and watch it…I’ll wait.

Welcome back. As I said in Kat’s comments, little girls do not get to be little girls anymore. Granted, I did not raise girls, but some things we should just know. It is surprising to me what some parents let their daughters wear. I’m sure you know what I mean…little girls who wear clothes that a teenager would wear. Skin tight leggings, off the shoulder tops, high heeled shoes…for heaven’s sake, and eye shadow, and lipstick. It is atrocious to see some little girls clomping around in shoes obviously designed for someone 10 or 12 years older. They can’t even run around and play. And then you see them in these long dangly earrings that are just an accident waiting to happen.

Why should this obsession start so young? Little girls already are talking about “looking fat.” It is bad enough that we adult women fixate on size and weight, must our little girls worry and stress over it while they are still babies? Is it because they hear us talking: “Do these pants make me look fat?”, “Oh, no, I can’t have dessert, I’m trying to lose weight.” , “I wish my hair wasn’t so flat, or curly.”, “Will you look at these freckles/age spots on my skin…they’re so ugly.”
We MUST learn to love ourselves…whatever shape we are in…and pass that love on to our daughters, and neices, and grandaughters. It is such a crock that we are handed daily by all types of media…we must look younger, thinner, smoother, tighter, taller or we do not measure up. Measure up to whose standards? Do we even KNOW what our own standards are anymore…or have we adopted the world’s ideas of beauty and perfection? Do we tend to think the “pretty people” are somehow more worthy of our attention? I am in favor of getting and staying healthy, and I think exercise is great…for mind and body. But, there are some of us who will never fit into a size 6 again no matter how much we diet and exercise. But, if we are the best we can be…that should be enough. And if all we, as adult women ,do is obsess about this, if it colors everything we say and do, how can we expect our little girls to have any other attitude? Which little girl that you know will be passed over because she is a little chubby? Which of your daughters or grandaughters or neices will not be thought of as ‘good enough’ because she is not wearing the cool shoes or clothes or purse? If we allow our 4 and 5 and 6 and 7 year old girls to dress like teenagers, why are we surprised when they want to act like teenagers? They are missing out on the chance to grow through the normal stages of girlhood…to find out who they are and what they think. And us moms of boys…we are just as responsible to teach our young men, that all women are to be respected and valued. We must teach them to look at the whole woman…not just the outside.

Oh, the responsibility we have. But, first we must accept ourselves and learn to love the person we are now. I am not where I would like to be in regards to weight…but, I am where I am at this point in my life, no less worthy, because of a few extra pounds. I can deal with the problems and obstacles before me…and I can be proud of the choices I make. I can stand tall and proud of ‘me’ even with a few rolls around the middle. This body has seen me through many trials, good times and bad, 3 sons, a husband…..and even though it gets mighty weary sometimes…it’s still going. And, I thank God for it. Every young girl in our world today, regardless of size, shape, or color should learn from the youngest age that they are of great value…they are worthy of all good things..they…themselves…their soul…NOT their size.

Well, this post started out as one thing and ended up somewhere else, didn’t it? Thanks for listening.

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I am a Christian woman who has survived many years on the planet. God has blessed me with a wonderful family: husband, 3 sons, a dear DIL, and a precious grandson. I also have dear friends to keep me inspired. I am an artist of sorts and am finding my way through the great blessing of retirement. I recently retired after 20 years as a music teacher. Life is good!

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