Friday, December 12, 2008

Merry Christmas from the Bookamer home!

"The virgin will be with child and will give birth to a Son, and they will call Him Immanuel" — which means, "God with us." ~ Matthew 1:23

We are so thankful that God came to live with mankind as Jesus Christ, and that He is still with us through His Holy Spirit. Life is not always easy, but thanks be to God for His grace through Jesus Christ and the indwelling Holy Spirit.

To catch you up with our growing girls, Jamila is in 5th grade, Joanna is in 4th, Julia is in 2nd, & Jenna is spending her last year home with Mama before she goes off to kindergarten next year. She has told me that she has decided not to have any more birthdays so that she can stay home with me. :) Speaking of Jenna, this week she was so excited to tell me that she figured out “P starts with pizza” … then later “penguin, too!”

Jamila, Joanna, & Julia all played soccer (aka football) in the spring & plan to again this coming spring. Each of them does very well in school & love to keep up Webkinz accounts.

Jamila & Joanna are working very hard illustrating my children’s picture books based on UAE childhood memories. I then scan them into the computer to create my 2-page spreads, formatting to add the text & borders. I am getting pretty excited that they might actually get published after working on them for many years. (I had an excellent illustrator friend who just never had time to finish a book to submit it to a publisher.) So far, we have the inside covers, 7 pages & the glossary for the 1st book, as well as 2 pages for the 2nd book. I am so thankful for the girls’ abilities & willingness, especially since my neuro-muscular condition makes it impossible for me to draw like I used to.

The difficult aspect of our lives is my diagnosis with spinocerebral ataxia (SCA). I just finished 6 weeks of physical therapy, which (not surprisingly) didn’t help. David & the girls really pitch in to do what I find it increasingly difficult to do. In addition to all that David already does at work & at home, he is up for a 3-year term as deacon at our church. And so, the Lord continues to remind us to rely totally on His grace as we strive to live each day to His glory.

Saturday, December 06, 2008

Coming to the end of PT ...

Next week will be my 6th & final week of physical therapy. We can't see any improvement, but hopefully it is slowing down the progression of the ataxia (SCA). I have PT homework to do, so will try to remain faithful at these balance & coordination exercises. I will miss my therapist's lower leg massage rub-downs that I have been spoiled with at the end of each of my PT sessions.

I do struggle with feeling totally unmotivated & with bursting into fits of crying for inexplicable reason, but the prayer of dear friends & St. John's Wort supplements seem to be helpful. Thank you for your continued prayer for me.

Thursday, November 13, 2008

CTS Post Script

I was reading over old comments & realized I never updated regarding the carpal tunnel surgery, so this is especially for Maxine since you asked:

The carpal tunnel surgery was a success in that my right wrist/hand no longer goes numb or tingly any more. I still wear a brace on my left hand at night so that it does not "go to sleep." I continue to lack control of a pencil or other instruments that require fine motor skills. However, that is because of my SCA, so this is not something I expect to change. I must admit that before the CTS surgery, I was hopeful that I'd be able to draw once again, but since that wasn't the source of the problem, that's not going to happen. Oh well, I am thankful that the CTS is taken care of, though ~~ no more tingling sensation!

Sunday, November 09, 2008

NEW SHOES!

I am walking on clouds ... well, not literally, but I am loving my orthopedic shoes with 3 inserts & mega support!

We won't know for another week or so if physical therapy even helps at all. After Wednesday's session, I was an emotional wreck, which is probably one reason (along with its questionable results) that I am not so vocal about physical therapy. While I do love my therapist & see the positive side of what we are doing, my time there really highlights my physical limitations and leaves me pretty "played out."

Saturday, November 01, 2008

P.T.

I met my physical therapist yesterday. She evaluated and tallied my "balance score," which was something like 30 out of 50. She'll give me a printout of her report when I go next week. I am to see her 3 times next week.

Two new things she told me about are that ...
  1. ... she will set me up with a weighted pen, weighted spoon, etc, so that my brain can easier assess the location of these utensils.
  2. ... she will get me hooked up with an ataxia newsletter, which would be helpful identifying resources, etc.
It is amazing (& slightly alarming) to realize how taxing just a PT evaluation session was on my legs yesterday. My knees and shins were in great pain afterwards, but a couple acetaminophens did the trick. My one shin was even paining during the wee hours of the morning today.

Anyhow, I really like and feel confident with my physical therapist & will report on the progress.

EDIT: Berg balance score = 38/56

Wednesday, October 01, 2008

update

The physical therapy ℞ came in the mail today (4 Oct)! David reminded me that the doctor months ago had said it wouldn't hurt, but it wouldn't help either, so we'll see...

I have been less active, so seldom experience great leg or foot pain. The most recent development in the last month is that when I stand after sitting for any length of time and also during the night, I experience extreme tightness in my calf muscles ("Charlie horses").

I almost forgot to mention 2 other progressions that I have noticed. 1 is a more noticeable stiffness of my knees. I often experience pain in them, & they give out frequently. The other is that stepping on the tiniest pebble (a mm or 2 in diameter) at the wrong spot on the bottom of my foot has made my leg totally & suddenly give out (1 Sep 08).

Monday, August 25, 2008

Phone Call

I spoke with my neurologist's nurse today. She said the 3 pending DNA tests were all negative. This simply means that a blood test has not yet been developed for the particular variety of SCA I have. The nurse also said that tomorrow she'll send me a prescription for physical therapy. We'll see if that helps at all ....

Sunday, August 17, 2008

Dustpan for Jesus

This was my favorite VBS skit from last week. Jamila played Tisese, & Joanna was Mrs. Bush.


"Preacher, may I go with you to the mission? The young African boy begged. "I want to learn about Jesus, and how to read the Bible like you do.
Raymond Bush, the missionary, looked in surprise at the earnest face of the boy. "What is your name, my boy?" he asked. "And do you have permission from your parents and your chief to go along with me?"

"I am called Tisese," the boy replied. "Will you take me, if I am allowed to go?"
The missionary promised that he would, and so the next morning a very happy Tisese followed along with Raymond Bush and his men. It was a long way from Tisese's village in the interior of Africa back to the mission station. For nine weeks, the group of men and boys traveled through jungles, plains, and desert sand. The days were long and tiring, but very exciting to a young boy who had never been far from his home village before. The wooded lands were full of monkeys, giraffe, and elephants. On the plains, lions stalked herds of zebra and antelopes, while ostriches ran awkwardly through the tall grass. Clumps of thornbushes were everywhere. The Africans called these "Wait-a-bit thorns" because when you were caught in them, your friends had to wait a bit!
Night time was scary for a young boy. Their camp had to be surrounded by a ring of fire all through the night for protection from wild animals and mosquitoes. The men would cut timber, pile it all around the camp and set fire to it. During the night, the fire was kept burning, and although lions roared in the darkness outside, the travelers with the circle were safe.

At last they arrived at the mission station, where Raymond Bush lived. Now Tisese could finally go to school! How he loved to learn. Eagerly his quick mind drank in the stories of Jesus and all the truths of God's Word. When he was not in school learning, he would follow the missionaries around at their work, asking questions. "Tisese, you ask more questions in an hour than I can answer in a week!" Raymond said one day.

But Tisese was not embarassed. There were so many new things to see and learn, he just had to ask questions. "What is that thing that you are sweeping that dirt into?" he asked Mrs. Bush one morning as she swept the floor of her hut. "This is called a 'dustpan'," the missionary's wife replied.
"Thank you!" called the boy as he hurried past on his way to school. Slipping into his seat, he waited for class to begin. As soon as the teacher called his name, Tisese rose to his feet. "Teacher," he told the missionary solemnly, "I want you and everyone to know that my name is no longer Tisese, 'the-animal-that-runs-through-the-woods.' Now that I am a Christian, my name shall be 'Dust Pan' forever."
"Dust Pan?" the teacher exclaimed, surprised. "Why ever would you want to change your name to Dust Pan?"
"Because, Teacher," the boy replied earnestly, "I was just passing your house and saw your wife sweeping with that tool called a dust pan in her hand. She carried all the dirt out of your hut with it. I want to be a dust pan, too, so that when I go home, I may carry out the dirt from the lives of my father, my family and all my friends. I want to be a dust pan for Jesus."
From that day on, the boy could often be heard praying that God would make him a good dustpan for His service. Soon he brought five of his friends to Jesus, and the six Christian boys together witnessed to others.
Time passed and Mr. Bush was preparing to take another evangelistic journey into the north country where Dust Pan's village lay.
"Now, I can go home and tell my family the Good News about Jesus!" Dust Pan said joyfully.
"No, Dust Pan," the missionary objected. "You are still too young. You should stay here in school for a few years yet, and my wife will need you to help her while I am gone."
"Preacher, I must go now! cried Dust Pan. "There is no time to lose! Even now my family could be dying without Jesus. My father could be killed in a tribal fight. My mother may be eaten by lions while working in the garden! My brothers and sisters may die and never hear of Jesus in time."
"All right, my boy," the missionary relented. "You shall go along, and may God bless you as you try to be a Dust Pan to your people!"
Once more Dust Pan traveled the weary an dangerous miles through the African jungles following elephant ant hippopotamus trails. Through burning desert sands the caravan plodded, until Dust Pan's feet were sore and covered with blisters. One night the boy lay moaning with pain as the missionary tried to treat his blistered feet.
"You cannot walk any farther with such sore feet, my boy," Mr. Bush said sadly. I will leave you here with the choef of this village and pay him to care for you until your feet heal. You can go along with me to your village next year."
"No, no! I must go with you now!" Dust Pan insisted. "My father may be killed in tribe fighting. My mother might be eaten by lions while she works in the garden. My brothers and sisters might die before next year, and never hear of Jesus!"
So when the travelers went on the next morning, the determined Dust Pan came limping along with them!
The trail that morning led through miles of tall grass, called elephant grass. Suddenly as the path took them around a sharp bend, a lioness sprang from a clum of grass stems! In one awful instant, she pounced upon a servant who was carrying a box of supplies for the missionary. With a cry, the man dodged and the lion's paws struck the box on his back, sending it rolling into the tall grass. Jerking up the shotgun that he carried, Mr Bush fired! In the excitement, he missed. Hissing horribly, the lioness disappeared into the tall grass.
Feeling shaky, but thankful, after their narrow escape, the mission party continued on. Their water supply was low, so they were in a hurry to get to the river. At last, late in the afternoon, they reached their goal. As his men pitched their tents and refilled the water bottles, the missionary counted them. One was missing!
"Where is Dust Pan?"he called in alarm. "Dust Pan is not with us! When did you see him last?" But nobody knew.
"Maybe the lioness got him," one man ventured. "If he's out there in the grass alone, he's been eaten by now," the others muttered. "There's no use going back to find him!"
"What shall we do, Lord?" cried Raymond, falling to his knees in prayer. I've already had two men killed by lions during my travels, he thought. I don't want to lose Dust Pan! "Lord, I know that You can do anything," he prayed. "Please protect this boy somehow, and save him for the work he wanted to do!"

As the missionary paced around and around the camp, he strained his eyes searching for any sign of movement among the tall grasses. Far away a lion roared its horrible, coughing roar, and a shiver went down the spines of all the listeners!
The sun was sinking behind the hills, when the anxious missionary finally saw the grasses waving along the paths where they had travelled. Running forward eagerly, he cried, "Dust Pan! Are you safe, my boy?"
Staggering wearily out of the elephant grass, Dust Pan lifted his hands in triumph. "God kept me alive, to tell my parents about Jesus!"
When the relieved missionary reached his young friend, though, he saw a sad sight. Even though Dust Pan's sore feet had been bandaged and padded with dry grass, the blisters had burst as he walked and his feet were now bleeding with every step he took. It was no wonder he had not been able to keep up with the others!

Raymond Bush called for his men and together they carried the tired boy the rest of the way into camp. Kneeling before him, the missionary did what he could for poor Dust Pan's bloody feet. "Lord," he prayed humbly, wat a love for souls is in this boy's hear! He is a better missionary than I am. Help me to be more like Dust Pan!"
When Dust Pan finally reached his home village, the battle had only begun. His father was one of the most famous witch doctors in that part of Africa, and usually killed more than six hundred people every year! In his heathen cruelty, he put to death anyone who offended him by poisoning them, burying them alive, or tying them to ant hills and letting the ants eat them. Was there any use in hoping that such an evil man would become a Christian?
But Dust Pan's faith and love won the hearts of his whole family -- even that father! Both his parents, his three sisters, and all five brothers were converted and became Christians. Then Dust Pan began to share the Gospel with others in his village. When Raymond Bush returned the following year, he found three hundred and sixty-four new Christians wanting to be baptized, all through the witness of one young boy.
What a lot of sin, darkness, and dirt had been carried out of that corner of Africa, by one Dust Pan in the hands of Jesus!

EDIT: This account is taken from Missionary Stories with the Millers, by Mildred A. Martin, chapter 24. "Historical Note: Raymond L. Bush was an American missionary to South Africa in the early 1900's. The story of the boy named Dust Pan is recorded in his autobiograph, Thinking Africa."

Friday, July 18, 2008

Postponed Visit

Well, today's visit to the specialist was a little frustrating. I'll spare you the details, but basically we've known since November that I have a congenital, degenerative, untreatable condition called spinocerebellar ataxia, so the visit today seemed pretty pointless. Jamila was a great travel companion/co-pilot, but we didn't learn much ... except why Botox wouldn't help my condition since I don't need to specifically relax any particular muscles.

In defense of my doc, though, I should mention that he scheduled this follow-up appointment ...
  1. ... to shift our annual visits to summer in order to avoid snow storms like the one that coincided with our last appointment.
  2. ... because he is willing to keep me on (rather than send me back to my local doc) due to several unsettling comments my local neurologist had made.
The major disappointment was that I still do not have the 3 test results that were pending last time I went. Hopefully, my doctor will email them to me very soon.

Right now I'm feeling pretty wiped out (my legs are achy), so it's probably not a good time to post, but generally I just stay pretty inactive & I feel fine.

Thanks so much for praying!

Saturday, June 28, 2008

A Big Bill & the Lord's Wonderful Provision

We had a bit of a shock when we received the bill from the lab in Massachusetts. We had misunderstood the various insurance explanations & thought we were covered from the costs of this "for profit" organization that was performing the Complete Ataxia Evaluation, which is designed to analyze DNA. We were then required to send 25% of the bill amount to the lab, along with an application to qualify for paying only that amount, copies of certain documents, etc, within 30 days of our receipt of the lab bill. The 25% was just about covered by the government's stimulus tax return, which came to us just at the right time. We then received prompt word that our application was accepted & that everything was squared away with the lab! (What a quick answer to prayer!) Loving brethren have also generously helped us with the amount of the bill above and beyond that tax return, and we are very thankful for them and for the practical love they have expressed!

Just to keep you up on my mobility (or lack thereof) ... We found a corner of our bedroom where the computer can fit. (It used to be downstairs, and I rarely go down at all any more.) David and the older girls help a lot with laundry downstairs. I spend a lot of time here at the computer -- it's the safest for me to not tempt my poor balance much, so I stay off my feet a great deal. The downside is that I have gained quite a bit of weight. The combination of my inactivity and my hypoglycemia makes it almost impossible for me to loose any of it since if I cut back on my protein intake, I become quite ill.

The other thing that has helped me quite a bit (in addition to having the computer upstairs) is that my dear, handy husband has fastened two grab bars: one to make it easier for me to step up onto our back stoop in order to enter by the back door and the other to use as I step into our bathtub easier.

Hershey has moved my appointment to 14 July, so I will update after that. Thanks again for all your prayers and expression of concern.

Wednesday, February 13, 2008

Follow-up Visit

My visit yesterday was not completely conclusive, but it did reveal 2 major items. The reason it was not conclusive was that 3 items on the complete cerebellar ataxia are still pending, the receipt of these particular results will solidify a diagnosis.

Most results that did come back were negative; however, the test results did reveal a pair of heterozygous POLG1 (DNA polymarase gene). This is what generates protein for the cell mitochondria to produce energy. By heterozygous, I mean that 1 of this pair is functioning properly; the other is not. 2 out-workings of this finding are PEO (progressive external ophthalmolegia), having to do with the eye, & parkinsonism, which simply means that there are some similar symptoms to that of Parkinson's disease.

The test result report does say that this finding is "of unknown significance." If 1 of the 3 pending tests turns something else up, that would be more likely the source of my problems, rather than the POLG1.

The other revealing thing during my visit was my MRI CD, which I had asked the hospital here to make for this particular visit. My neurologist told me that my cerebellum and spine are small, characteristic with people with cerebellar ataxia, and that instead of looking full and bushy, my cerebellum resembles a "winter tree." This is not reflected in the MRI report, so I am very thankful for the CD that my neurologist was able to view. I apologize for the size of the picture in the link (associated with this post title -- mouse over the words "Follow-up Visit" & you should see a hand instead of the butterfly or I bar; click there), but it was the only 1 I could find that shows what I mean. (By all means, let me know if you find a clearer diagram.)

I have another appointment scheduled there for 23 June, 2008, when we may hopefully know the pending test results. The plan then is to visit annually just to "check in" with my neurologist. Presently, no treatment exists for any of these hereditary conditions, but who knows .... at some annual visit, my doctor may be able to tell me about some newly developed treatment!

Sunday, February 03, 2008

Blood Test Results

For those of you who have been praying ... & wondering, no, I do not know my test results. I am presuming they went directly to my doctor in Hershey. I see him on the 12th of this month, so we expect to know the results then. Thank you so much for all your expressions of concern.