Pearls and Dreams: September 2006

Wednesday, September 27, 2006

Judgmental looks ....

Pearls and Dreams

So ... Saturday, I let someone get to me. I worked harder than what my body had to give. It took me 2 days to uncurl my flared body from the position it went into when I finally stopped. I'm still paying the price. It's Wednesday and I still haven't loosened up enough to feel like I'm going to be OK by Saturday. When that happens ... the cycle would be endless.

So, my concern is mounting through the week and I'm praying.

"God, you know what I want to do! You know how much my hands want to be in the middle of this, you know how much it hurts when the looks come to tell me I'm not enough ... I HAVE TO DO THIS GOD!"

So, I argue with God, all day, every day. I HAVE TO DO THIS! I've worked too hard, prayed to hard, cried too hard and trusted Him too hard to not be a part of this now!!!! I cannot just sit back and watch ... what am I supposed to do sit still while my house is being built by others?

Sit still?

I've heard that before.

Still ... still? God? You want me to SIT STILL? How in the world can I sit still? My house needs to be built, what will people think? What will they think of my testimony about YOU if I just sit still?

So tonight ... we sing a new song ... Called STILL

Based on Psalm 46:10
If I could have ... I'd have been on my knees.
The scripture I memorized for a ribbon as a child rang loud in my heart

Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth!

Do I need to do anything for God's name to be exalted? Do I have to be the one to swing the hammer or sweep the mud?
Be still ... and know that HE is God.

So, I looked it up, in context ...
Verses 6 through 10
6 The nations raged, the kingdoms were moved; He uttered His voice, the earth melted. 7 The Lord of hosts is with us; The God of Jacob is our refuge. Selah 8 Come, behold the works of the Lord, Who has made desolations in the earth. 9 He makes wars cease to the end of the earth; He breaks the bow and cuts the spear in two; He burns the chariot in the fire. 10 Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth! 11 The Lord of hosts is with us; The God of Jacob is our refuge. Selah

I sat back and realized ... I've talked repeatidly about how he calmed the war zone of my household. How He ended the war in our family ...and brought PEACE and calm.
I constantly am in awe at the family that I now call mine. That God gave me inspite of the war that once existed.

This is the same God ... be still and know ... I can sit back and watch him build my house ... and know that he is God. That doesn't mean that I can't do anything. But when it's time to sit, and let my body rest ... I can sit ...and rest and know that HE IS God ..and in HIM I take refuge.

Not in what other's think of me, not in what I can do or can't do ... not in whatever I am afraid that people will think of God if I don't do ...

It's not my job to do anything but
To be still and know that HE is God and he WILL be exalted.

Monday, September 25, 2006

QUICK RECAP

Pearls and Dreams

Start of Day one September 9, 2006 ... Raise the wall ...

End of Building Day one, September 9, 2006.

End of Building Day 2, September 16, 2006.

End of Building Day 3, September 23, 2006 (but in reality, just 2 calendar after the first wall went up!!!)

My goodness .... it's a blurr!!!!!!!!

Sunday, September 24, 2006

Pearls and Dreams

Pearls and Dreams

So far, only 4 pictures from yesterday's build. However, Take note, they ARE from yesterday, and this is not Tuesday ... my nephew got them out to me yesterday. Goooood Nephew!!!!

They have the roof on them from the roofers last Monday.

Also, notice how pristine white the porch cement was last Saturday in spite of the 61 people trapsing in and out ... and look at the mess from yesterday ...oh my oh my.

I spent yesterday trying to keep some degree of cleaning going. Pk's lupus did not appreciate it. My hands are swollen, muscles sore. You can actually SEE my sternum swollen with the costochondritis!! I have mouth sores (being in the sun too long?) and the Myasthenia is in a nice little flare (over use of muscles in trying to scrape off mud? who knows)

I gotta get past the looks ... there was one lady that was just a power house. She was older, little, long gray hair ... and could do anything. But everytime I sat down she'd give me this sour look that said "this is YOUR HOUSE! WHY are you sitting down?" More than once, she shot me a dirty look for not working as hard as she was working. It was really hard because I couldn't lean against a wall, or sit down without having her give me this look of disappointment or look of distain that said "Look at me, at my age ... and you, young and it's your house, what a shame!"

I'm used to those looks ... I get them frequently. I hate them. Don doesn't get it. He says he's never seen one and doesn't understand what I'm talking about. Well Don, no, you wouldn't. You, who would have been over 6 foot, but because of polio/scoliosis is 5'3 on one foot and 5'0'' on the the other, weighs 98 lbs ...is VISIBLY disabled ... you who people watch and wonder HOW you're even able to walk ... no one looks at you that way. It's the people with invisible disabilities that get those looks.

I worked so hard I got home at 4:30, was in bed by 5. Got up for dinner at 8, was back in bed by 9. I woke up this afternoon at 3 pm. I can tell you, I won't be up late tonight.
My pastor preached today on Balance. I missed it. Ironic.

Here's yesterday's pictures. Hopefully there will be more.

Friday, September 22, 2006

Pearls and Dreams

Pearls and Dreams

Thank you Deneice at The Journey ....

Your Linguistic Profile:

60% General American English

15% Dixie

10% Upper Midwestern

5% Midwestern

5% Yankee

What Kind of American English Do You Speak?

Tuesday, September 19, 2006

Saturday's Habitat Pictures (Sept 17)

The first truss went up at 7:30 in the morning.

Before we knew it they were all up!

Solid construction!

Look at our Handiwork!!

So many people, some just had to look on.

The decking was hard work.

Peeking through a decked out roof!

The end of building day 2. Work enough for building day 4 1/2. Ready for the roofers to come on Monday September 19. (Roof is on, as soon as the pictures come, they will be posted). My friend T and I had fun going back and forth through the front door. In and out, in and out. Benjamin got on our nerves at one point and LITERALLY got sent to his room. :D He quite enjoyed that.

Monday, September 18, 2006

Time Flies

Pearls and Dreams The vaccination records quandry a while back for my oldest got temporarily fixed, but they asked us to get it "FIXED". I only knew one person who could FIX it, and that was the doctor who'd given the vaccines. The clinic, where the boys go now, is where the doctor works as an attending. I tried to get the administrator to go to this doctor, fill him in and ask him what to do, but, she said "our doctor's don't know what to do, they are not administrative doctors" (Ok, I understand that this is a medical school clinic, but this doc ran his own clinic for over 15 years, he does too know what to do!!!!)She also said he would not remember me. Um, my husband has extremely severe scoliosis due to polio, my kids both were born with immune deficiencies and were both hospitalized repeatidly during the first year of their life. (5 for Samuel, 7 for Benjamin, Benjamin was hospitalized an additional 3 times in his life, including once for meningitis) I, went into his practice, perfectly healthy and walked into the hospital to have Samuel, and walked out with Myasthenia Gravis and Lupus (although it did not get diagnosed for a couple of years) He saw me through a blood clot, MG diagnosis (what doctor is going to forget a myasthenic diagnosis????) Benjamin had seizures, craniosynostosis, speech and developmental delays ... and Samuel was talking full sentences at a year old and would tell Dr. M that "you are a goofy goofy man!" when Samuel was just 13 months old! We're not exactly a forgetable family. Granted, I just told the administrator that I knew he'd remembered me because he'd told the residents that he'd delivered my kids and to tell me hi on more than one occassion that we'd been in there. Nope, he'd not remember, it'd been too long. The most she could do was make an appointment and see if I could work it out face to face with him. Fine, at least I'd get to say hi. (I think she counted on him telling me there wasn't any thing to be done). So, we get there today, he walks in, significantly more white haired than he was when he left private practice 10 years ago, a bit shocked to see my child a young man and said "I'm old". To which, I about died laughing because I told Samuel that was going to be the first words out of his mouth. Samuel, was a bit unerved by our whole interaction ... Dr. M and picked up where we left off ... we'd have been friends if we'd met in another venue, and Samuel said it was obvious. I had told Samuel everything Dr. M was going to say, and Dr. M told Samuel that I had probably told him that he'd say this or that. Samuel, was a bit freaked out by the whole thing. 10 years took nothing from our ability to communicate. So, he looks into the computer and sees exactly what the vaccination record problem was, and knows exactly how to fix it. (yes, it could have been done at the administrative level, his comment to that ... "well, at least this way you got to come in and say Hi". Samuel almost fainted) Samuel got to talk to him about going into medicine and his plans for forensic pathology and family medicine and you could see Dr. M's pleasure that he'd chosen that route. We left and I went to shake his hand and he said he wanted a hug instead, very very sweet. It reminded me of the day he left and I took the boys in to say goodbye. Very neat. I forgot to tell him about the Habitat House and my book. oops! I did find out how his family is. :D I don't know how we would have made it through those early years of parenting and early years of the disease process without his support and education of what was going on. I was devastated when he chose to leave private practice (he initially went into quality assurance for insurance before going into teaching) I have had many doctors in the years since .....

Saturday, September 16, 2006

Building Day 2, or is it 4?

Seriously, I know it's end of day 2, but, we might as well have been at the end of day 4.

For all the trouble that we've faced getting here, the miracles we've seen God work out getting it done and while it's happening are just tremendous.

Today we had the roof decking finished, including the covered porch decking, got our two front doors and our outside insulation. It is ready to be shingled and siding put up.

Yes, we're way ahead of schedule.

We were working this morning and a truck pulled up. Asked to talk to the person in charge. Seems he owns a roofing company, they'd just (literally just, they were driving home from it) finished a project and had some left over shingles. They were taking it to donate to some charity somewhere. Rather than do that, how about if they donate it here to this build.
More than that, their crew isn't busy on Monday, would it be ok if they do the roof for us?

EXCUSE ME? *gulp* So, our site supervisor told them that we'd do what we could and he'd meet with them tomorrow. (he couldn't insist the volunteers stay and do extra work.)

He thought, well, we'll try to get it as far as we can, then a Habitat crew could come and do some more on Sunday. Well, about 4ish, the crew that was left found out what was going on ... and there was no way they were going to let this opportunity slip through our fingers. We knew the donated shingles were ours, but the labor ... we had to get the roof ready!

And, we did. We left the lot 11 hours and 15 minutes after we got there this morning. Site supervisor left 11 hours and 45 minutes after he got there!!!

It is incredible indeed ... At the rate we're going, we were told we should be done by Halloween. So much for Thanksgiving! :D

I will put up pictures as soon as my nephew gets them up. I was just so excited about the blessing today I had to share. There was more today, but I'm so tired, that's all I'm getting out of these fingers tonight!

oh, and we had 61 people sign in. Not sure how many missed the sign in sheet!!!

Thursday, September 14, 2006

Good News ...YIKES

Pearls and Dreams Friday Fellowship has been fast tracked. It could be out in 6 to 8 weeks!!! I could be getting my house and my book at the same time. Yikeziewozers!

Tuesday, September 12, 2006

Saturday's Dreams

Pearls and Dreams

And we pick up our dreams.

A burden carried alone, is too heavy to bear, but together, it is easy to lift!

It's up!

Lifetime of dreams!

Putting another wall together, together.

Building on the foundation of prayer.

A houseful.

That's MY NAIL!

That's MY HOUSE!

Day's end. (roof is neighboring church)

Happy Satisfaction. Dreams coming true.

Monday, September 11, 2006

September 11 Tribute

I thought I knew how to make a post stick at the top. Evidently, I don't.

Please go here to read my post on

To honor Michael Edward Gould

Sunday, September 10, 2006

Pearls and Dreams

Pearls and Dreams

World Suicide Prevention Day
September 10, 2006

Today was an important day in the world. I should have posted long before 9:40 at night. I planned on posting a few days in advance. After all …what good will it do to have it on after the day passes. I was torn, because the September 11 tributes were up as well.

I didn’t hear a word about it on the news. If not for Dr. Deb, I would not have known about the day. A day, that means everything to me.

There are people who think they can end their pain by ending their lives. They don’t realize what they do to those left behind. They don’t know the chaos that they will leave. They don’t know the destruction that is left behind. They only know that the chaos in their head will stop. They don’t realize that the chaos in their head might be loud, it might be strong, they might think it will never end … but it will. Eventually, it will.

But the grief … the pain that is left in the wake of a suicide …the broken heart …no, it’s not broken, it’s shattered … will never end. Grief doesn’t end. Just like the pain of a loss from something like the Oklahoma City Bombing or 9/11 ..the grief continues … it’s intense.

Suicide is such a secret shame. When it touched my life the first time, it was still a social taboo … our pastor wouldn’t even come to our house. He was ashamed that a member of his congregation had done such a thing!
I had teacher’s at school tell me that I could tell my peers that my father had died in an accident, but I could not tell them that he’d taken his life, it would traumatize them.

People are afraid to tell those they love they are suicidal because they are afraid they will be locked up and put on suicidal watch.

Suicide … is chaos.

I have a friend who has been suicidal more than once. She’s made great progress in the past year, but she’s scared me a few times. I have told her that she cannot kill herself, because she can’t do to me what it would do to me. She seems to understand that. There has been times that it has taken every ounce of strength that she has to not do it. Those moments, it takes every ounce of strength I have, to not run and protect my heart from the possible chaos that might be left in the wake if she chooses the wrong choice. She reads this blog, she’ll know who she is. She also knows that I struggle with this, and that she still has to tell me when she gets like that. My fear of loosing her, isn’t worth her keeping it from me … and the possible consequences if she’s alone in her pain.

When my step dad left me, he thought he was ending his pain, and making life easier on our family. He really thought that his depression and his pain was causing as much grief and torment for us as it was for him. No matter how much pain you are in, I promise you, if you end your life, you will cause more pain to those you leave behind.

Left Behind, Suicide is Not Painless
by Peggikaye Eagler

Pulling in the parking lot,
The hymn you're belting out,
I am aware of nothing,
But my Daddy's praising shout.
A walk in the woods together,
On Thanksgiving day each fall,
It gives my mom a needed break,
As we ran and talked or played ball.
When my peers would tease me,
And I thought my heart would break,
It was in your arms I found comfort,
You knew my future was at stake!
Then one day I ran home,
A good day at school I'd had,
Excited to share my joy,
I didn't know I'd lost you, Dad.
The time will stand forever,
A memory never to be erased.
A vision of horror and pain,
Abandoned, now pain, with anger laced.
You left me when I needed you,
Your pain stronger than my love,
I was still a child at heart,
But that day - into adulthood, shoved.
What pain could you have had,
That made it worth changing my life.
Did you understand my heart,
Would be shattered under this strife.
"Get over it already!"
I heard from those around,
I learned I could not grieve,
Show only a smile, never a frown.
So instead of healing pain,
Denial became my game.
Never show the broken heart,
Being sad brings only shame.
It's time for real healing,
That means reaching out to show,
Christ's love to the hurting,
Through healing, brings a time to grow.
How can I tell others,
That what you did was wrong?
If I cannot face the loss and pain,
Can I help them understand the new song?
Let's finally face it, Daddy,
Your choice for death was bad,
Not only did you kill yourself,
But you broke my heart, made me sad.
Your temporary depression,
Caused for me a life of grief,
I must choose God's healing,
Only He can bring true relief!
Your death I tried to bury,
But I have friends looking down your path,
Somehow I have to show them,
They would leave behind pain and wrath!
A permanent deadly solution,
To a hearts temporary pain,
It is not the real answer,
It will bring heartache, not gain!
Real healing will only come,
When in God's able hands they leave,
Their own pain and desperation,
In God's mercy they must believe.
From a father who chose death,
To a God who breathes life,
An experience to share with all,
Proof God can heal a heart's strife.
So while I know their pain is real,
And I don't mean to lessen their grief,
I do want to be an example,
That only God, not death brings relief.
I will shout it from a mountain,
Write the words on many a page,
Till others know of God's grace,
And choose life, not death or rage.
© Peggikaye Eagler

Michael Edward Gould

Dear Michael,

We never met, but when I started to read about you for this memorial project, I felt like I did know you. I wish, I had. I think, I would have liked you a lot. I think, we would have been friends.

It was odd. My reason for wanting to do this project was because of how much I identified with the terrorism. Even though 9/11 was on a much bigger scale than the Oklahoma City bombing, and it was from foreign attackers ... it still hit at the heart of our nation. I'd lost a friend in the OKC bombing. A friend of mine died in the OKC bombing, and in honor of her, I wanted to honor someone who died in this tragedy as well.

So, I started to research who you were. I found that you were a 29 year old, from Hoboken NJ. You had lived for a few years in San Francisco and had recently moved back to the East Coast. You were a securities trader for Cantor Fitzgerald that was the 104th floor of the World Trade Center.

Your degree was in finance from Philadelphia's Villanova University in 1994. When you graduated, you got a job with Cantor Fitzgerald, the nation's largest bond broker. You started working for t the firm in New York City, moved to San Francisco, then back to the East Coast.

You loved sports, having played both hockey and baseball as a teenager.As an adult, you enjoyed weight lifting, and also enjoyed in-line skating, playing the guitar and driving fast cars.

Those were the facts. Statistics. General Late 20's hard working American man. Just the kind the terrorists were after. To tear apart our nation.

But I dug deeper and found a tribute page to you. My heart broke, it was on the same tribute page that held tributes to the Oklahoma City Bombing victims. Some of the same comments written to my dear friend Trudy were written to you. You weren't just a man who went to work every day and played just as hard.

You were a loving man, who cared about your friends and family. When you committed yourself to someone, they became a part of your heart. The emotions in the goodbyes and I miss you's were felt through the computer screen so deep ... it was unmistakeable what kind of a person you were. You had a heart of gold, just like Trudy. How fitting that I did this for Trudy, and got someone like you to have the privilege to honor.

Some of the comments made were:August 26, 2005
Mike, I Love and Miss You. I went to Braga Park the other day to pick up my Daughter, When I got there my Husband was puzzled? Why are you crying? I remember Mike here, I said. I Love and miss you my sweet Nixon. Kiss my Mom for me. Love, Justine
Justine (Newport)

July 30, 2005
Happy Birthday, Mike. This date brings bittersweet memories for me. Burnt birthday brownies Fed Ex'd to Hoboken (both you and Martha Stewart were disappointed)...

Time goes on, but your memory never fades. I try to focus on the light, the happy and many fun times; that's how I will always remember you. I will continue leaving it to God to provide comfort when I feel sad about the fact that you are gone. Miss you.
Vanessa Mills (Redwood City, CA )

September 8, 2004
Dear Mike,

May you know that you and your family are in my thoughts and prayers. I think of you often and know your looking down upon us. I think about ALL the VU memories we shared together and smile and laugh a lot thinking about those times together. God Bless you and your family and know I pray for you ALL daily and often! May I meet each day with the determination and drive you did Mike..Thinking of you.
Justin O'Malley (Philadelphia)
December 31, 2001
Dear Mike, It goes without saying that the holidays find us missing you so much. As I look back on the past year trying to reach for the things to be thankful for, I think of you and all that you taught me. You inspired me to be a better person, to give with my heart, to love unconditionally. You taught me to be strong, and that strength of character and loyalty are some of the greatest and rarest qualities that one could possess. I will never forget when my mom fell ill and I called you from the hospital. I said, “Treat your parents like gold while they’re here, because you never know when your time with them will be the last.” There wasn’t even a pause before you said, “I could have told you that a long time ago.” You knew exactly what it meant to treasure the people you care about. So as this year comes to a close, it is not your loss that I will remember, but all that you have taught, inspired and gave. Your spirit does live on and you will never be forgotten.
Vanessa Mills (Burlingame, CA )

You taught people what it was to love, to care ... and to inspire. So did Trudy. It is not fair that you were taken away in such an awful painful way. Many today will be writing about how the terror happened, and how it effected our world, but I wanted to write to you, and tell you that your presences is missed in this world. You were important and your memory remains ... and will be treasured.

God bless your family, God bless you.

A stranger and fellow American,
Peggikaye Eagler

9/11 Project

Saturday, September 09, 2006

AWESOME

Pearls and Dreams

Today was an AWESOME and incredible day. One of the counselor's from camp came from Norman to see the wall raising. She's been praying for this project for 2 years!

Unfortuneately, The wallraising was about 20 minutes late because the Mayor of Broken Arrow was late, so our Pastor and his wife had to go, their daughter's soccer game was at 9:30. But, they did get to see the walls that were raised being built, and all the people there. Our Associate pastor was part of the ceremony.

No one warned me that I would be giving a speech at the ceremony. I found out about 2 seconds before the ceremony started!!!! So I had to talk off the top of my head!!!

In the program they had the scripture from Psalms 127:1a Unless the Lord builds the house, its builders labor in vain.

I didn't choose it. I didn't know it was going to be there. I couldn't have chosen a more appropriate verse.

The house has made remarkable progress. All outer walls are up, the inside frame is build. You can see where our bedrooms, our closets, the bathroom, mudroom, kitchen and living room will be. The windows and doors are cut out. There is a little house sitting on the corner of 616 S. Cedar Broken Arrow!

There was about 100 people that showed up throughout the coarse of the day. They average 50 at a wallraising.

As soon as my nephew sends me some pictures, I will post them.

It was just incredible.

I am utterly exhausted. Happy, incredibly happy.

Friday, September 08, 2006

best laid plans of mice and men

Pearls and Dreams

I had planned on writing a specific post tonight. I will have to do it tomorrow.

Tonight ... I went to work out this afternoon and then Don and I went to the grocery store. I walked into the house to come in to hear Benjamin crying. He was crying his cry that I've told him he's not to cry unless he has a broken bone.

He and Samuel had had a disagreement. Benjamin had no shirt on. Sugarfoot, Samuel's cat jumped on Benjamin's back and Benjamin threw him off. Sugarfoot hit the table and being a cat ...she hit the floor on all four paws and ran off, a bit miffed.

Samuel, being rather protective of Sugarfoot was livid that Sugarfoot had been thrown. (um, sorry, cat jumps on my bare skin, and I'm likely to fling said cat too!)
He got mad and kicked Benjamin.

Benjamin didn't want to be kicked.

Benjamin held out his hand to prevent being kicked.

Samuel's barefoot kicked Benjamin's hand.

Benjamin was screaming.

Samuel was shocked and mad that Benjamin was screaming so badly, but then, the hand did look a bit odd.

I got home about that time.

Took Bj to the emergency room. Fracture to the 5th metacarpel (however that's spelled). Dark purple bruise on the inside of his hand, big swollen lump on the back side of his hand.

By the time they told us it was broken ... he decided it was funny ...girls think it's cool for boys to have broken bones. OH brother!

Samuel is filled with guilt. We had to force him to eat dinner. Sorry bub ... not going to allow you to self destruct in order to assuage your guilt.
Glad you realize your mistake, but not going to allow you to inappropriately express it. *hugs*

The ER doctor said that normally they send you to the orthopedist a week later, but for some reason the ER doctor wants to see him on Monday. So, I don't know what means or why that is. Maybe they told him this is a rather happy squirmy kid. It is very swollen. We've dealt with too many fractures in this household ...and this is the most swelling I've ever seen. :(

The poor kid went to bed and said it didn't hurt hardly at all. But 10 minutes later called me and said "MOM!!! this hurts!" Yea, honey, you have a broken bone, it's going to hurt especially till you get the real cast.

So much for getting to help raise the wall :*(

For those who follow his essays in Under Cover ... um ...he'll be doing quite a bit of oral work for the next few weeks. *grimace*

Thursday, September 07, 2006

Pearls and Dreams

Wednesday, September 06, 2006

Done

Pearls and Dreams

Got the work done that my publisher asked me to (thank you so much Enigma and Marsha!!!) and tonight was the first night back for the school year for the worship team. It was a good day.

Picked up a script from the pharmacy. I can't wait to move. I keep thinking I should change pharmacies, but I'm moving in a couple of months and it seems changing 15 meds is an awful lot of trouble to move when you're moving in a few months.

I have one medication, Mestinon Timespan. Says right on the bottle ... Swallow whole, do not chew or crush.
Now, I've always been told that with Mestinon timespan, there is a special coating on it that allows the medication to be time released ... and if you crush it, chew it or cut it ..that it will release the Mestinon from the inside of the pill in an untimed fashion ... and therefore not in the manner that is the way it is meant to. It is ALSO the most likely way to get a Mestinon overdose (not a pleasant experience!).
So, I've been on Mestinon timespan before, but when Oklahoma Medicaid limited me to 6 medications a month, the convience of having the timespan and the regular mestinon seemed foolish with all the other necessary medications. So I stopped.
With Medicare Part D, I'm not limited in the number of medications, so my neuro and I realized I could start it up again. My MG is also doing well enough, I won't have to do as much of the regular Mestinon and I might be able to get by with mostly the timespan and just take 'booster' Mestinon's here and there. Very convienient.
So, he writes the script for 2 a day. 60 a month.
I pick it up.
My ambien, is written for 1/2 tablet a day 30 a month.
I pick up the medications.
I have 60 ambien ...tells me to take 2 a day.
My Mestinon Timespan says to take 1/2 tablet 2 times a day.

That'd be good ... give a myasthenic double ambien and half the mestinon with an open timespan so it's not being metabolized correctly. Can I say own Walgreens?

Check your meds people. Don't follow the label unless you know that's what the label is supposed to say. Make sure you know what the doctor meant for you to take.

I'm seriously thinking of moving my meds to a pharmacy by the new house since we start to build on Saturday and we'll be out there a few times a week.

Difficult Patient ... I did see your tag ... I will do it tomorrow, I'm still thinking about the answers.

My house starts Saturday ...can you believe it! It's finally here!! The day after tomorrow we go at 1 PM to mark the foundation and load the lumber into the trailer! So technically it's only 2 days.

It's less than 72 hours away!!!!!!

The brother that I posted about a while back, is coming later this month. He'll be here for a 3 day visit on the 28th!! Yeah! He'll get to see my house in process. :D

The publisher said they got the information I sent and now in Text management. It could take weeks there. (they format it for printing). I wonder if a devotional with poetry is faster, or takes longer ...hmmmmm.

Two weeks on green tea instead of coffee ...except today I had coffee with Wanda when we went out ... I think I like coffee better than Green Tea. Green tea is good for a treat, or just a beverage, it is NOT a good caffiene based drink. I need my coffee.

Tuesday, September 05, 2006

Pearls and Dreams

Pearls and Dreams

Possible pictures for the back of my book. The manuscript is due tomorrow. With the dedication, acknowlegment and forward, being written by my pastor.

House starts in just a few days. What a wonderful week this is!!!!!!!! God is good! Blessed be the name of the Lord.

edit ... played with picture editor ... these the one in black and white and the other in sepia

Sunday, September 03, 2006

Famous Myasthenics

Pearls and Dreams
John Spencer (1936-2006), famous snooker player who twice won the world championship (in 1969 and 1977). Born in Radcliffe, Lancashire he was first introduced to snooker at the age of 14 by his father. He was diagnosed with myasthenia gravis in 1985. He worked as a BBC Television summariser and was, from 1990 to 1996, chairman of the World Professional Billiards and Snooker Association.
Roque Carbajo Reyna (1936-1996), famous Mexican musician and songwriter. His mariachi band traveled all over Europe and played at Grace Kelley's wedding to Prince Rainier of Monaco.
Wilma Mankiller, former Chief of the Cherokee Nation (Oklahoma, U.S.A.)
Harold P. "Chuck" Klein (California, U.S.A.)
Amitabh Bachchan, the well known Indian actor, public figure.
Leonas Letas the well known Lithuanian poet (1924-1998) recognized in this page of Lithuanian Poets and a memorial page by his son.
Henrique da Costa Mecking (Mequinho) in Brazil. Mr. Mecking won the Brazilian chess championship at age 13 in 1965 and later went on to word numerous other Brazilian, South American and international championships. A website documenting chess in Brazil (in Portuguese) includes some background on Mr. Mecking's accomplishments.
Linda Darnell (1921-1965), famous Hollywood actress who starred in more than 30 Fox films.
Heine Toerien, famous radio personality in South Africa and first Chairman of the Myasthenia Gravis Foundation of South Africa.
David Niven (now deceased), famous actor and writer.
The late Aristotle Onassis - Greek business tycoon and husband of Jacquiline Bouvier Kennedy
Roger Smith - husband of the movie actress Ann-Margret (U.S.A.)
Lamar Lundy - formerly a football player with the Los Angeles Rams (California, U.S.A.)
Rondell Jones. He is a defensive back who plays for the Denver Broncos (Colorado, U.S.A.)
Hjalmar Gullberg the former poet laureate of Sweden. His poetry often describes his symptoms of MG.
Doris Lilly, (1922-1991) author of "How to Marry a Millionaire" and a book on Aristotle Onassis called "Those Famous Greeks." She was also a society and gossip columnist for the New York Post (U.S.A.)
Suzanne Rodgers, actress in "Days of Our Lives" soap opera (U.S.A.). Ms. Rogers is approaching her 27th anniversary on the soap opera as the character "Maggie Horton " who also has myasthenia gravis. Another page with Ms. Rogers. Several photos (note: copyrighted) Maggie Horton (Suzanne Rogers): 1 - 2 - 3 - 4
Sir Peter Wright - formerly director of the Royal Birmingham Ballet - now a Vice-President of the Myasthenia Gravis Association in the U.K.
The late Lord (Sir Lawrence) Olivier - world famous actor and film star - then director of the British National Theatre.
John Spencer - formerly World Snooker Champion - now active in the MGA in the U.K.
Amitabh Bacchan, the leading personality of the Indian Celluloid Screens. (India)
The late Phil Silvers (actor - Sgt. Bilko) (U.S.A.)
Noah Deitrich, right hand man for Howard Hughes.
Weeb Ewbank (former coach of the NY Jets and Baltimore Colts) (U.S.A.)
Lucianno Pavorotti's (the famous singer) daughter has MG (Italy)

"Sleepy" (©Disney) of Snow White and the Seven Dwarfs - reportedly modeled after a friend of Walt Disney who had MG. Note the drooping eyelids. (Hollywood, U.S.A.)

Another list has :

A short list of a few famous people that have been reported as having myasthenia gravis:

A - E

Frank Ballance - Former congressman in the US House of Representatives

Brandon Cox - Auburn Tigers quarterback

Weeb Ewbank - NFL Hall of Fame & two-time Super Bowl winning coach

Mabel Fairbanks - US Figure Skating Hall of Famer

F - J

Oscar Henriquez - Former Major League Baseball Pitcher

Donald Herbert - Famous radio personality in Los Angeles

K - O

Henry Kornhauser - Advertiser who also worked on Reagan presidential campaign

Lamar Lundy - Former NFL Pro Bowl linebacker

David Niven - Famous actor

Barney Nugent - Former baseball trainer for the San Francisco Giants

Lawrence Olivier - Famous actor

Aristotle Onassis - Famous husband of Jackie Kennedy

P - T

Glenn Parsons - Former mayor of North Baltimore, OH

Suzanne Rogers - Famous 1970s and 1980s soap opera actress

"Sleepy Dwarf" - One of the seven dwarves - believed to be modeled after a friend of Walt Disney's that had MG

Phil Silvers - Famous actor

Pro Football Hall of Fame Coach Weeb Ewbank
Roger Smith - Famous actor and husband of famous actress Ann Margaret

John Spencer - World champion snooker player

Saturday, September 02, 2006

MDA Research News

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August 25, 2006
Value of Thymectomy In MG To Be Tested
A multinational trial to determine the value of removing the thymus as a treatment for myasthenia gravis (MG) has opened at some 70 centers in the United States, Europe and Asia.
Removing the thymus, an organ of the immune system located in the chest, involves a surgical procedure known as a “thymectomy,” and it has long been used as a treatment for MG, a disorder in which the immune system mistakenly attacks the parts of muscle fibers that receive signals from the nervous system.
But, until now, no systematic study has been conducted that measures what, if any, benefit there is for patients in adding thymectomy to standard MG medications, such as prednisone. This study is designed to determine whether thymectomy provides additional control of MG symptoms or reduces the amount of prednisone patients need.
The trial is seeking adults with MG who are between 18 and 60, willing to be randomly assigned to receive prednisone and a thymectomy or prednisone alone, willing to be studied for at least three years, and meet other criteria.
For details, see the study’s Web site at www.soph.uab.edu/mgtx/, or call Greg Minisman at the University of Alabama-Birmingham at (205) 934-4905.

Return to the Previous Page My thymectomy was performed in June of 1992. I never recieved any benefits from that we know of. I will be watching this research very carefully. I will never regret having the surgery done, because, while it was a dramatic surgery, it was done on the best research available at the time. To this day, if they told me that they thought they left a piece of the thymus, and if they went back in and took it out, I'd go into remission ... I'd let them do it. Largely, because at this point, I'd do anything for remission, but also, because, it just did not hurt THAT much, for THAT long in the grand scheme of life. At the time, Having your chest cut opened and seemed like a big deal, having 6 weeks of recovery time seemed overwhelming, but hindsight, it really doesn't IF it was going to offer me my future, or hope of my future. I do wonder, however, how much the thymectomy contributed to the severity of the costochondritis that I have. (that is blamed on the lupus).

Pearls and Dreams

Pearls and Dreams The MDA is a constant source of research and keeping patients informed where research is going on regarding the disease that effects themselves or the ones they love. Currently, regardling Myasthenia Gravis, this is what the MDA has available for research:

Clinical Trials and Studies
Active Research Grants
Research Grant Programs
Translational Research Program

Physicians and Health
Care Professionals

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MDA Research Contact Information
Medical and Research Links
Research News

Visit Our MDA News Section and Research News for Updates.

(Last Updated 8/15/2006)
Clinical Trials & Studies of Neuromuscular Disease - Selective Listing
Active Trials Completed Trials Postponed Trials Discontinued Trials
Search active Trials
Search Results:
Myasthenia Gravis (MG)
CellCept in MG (Duke, Roche, FDA)
CellCept in MG (Roche, Aspreva)
Creatine monohydrate -- safety in children with neuromuscular disorders (UCSF)
Mycophenolate Mofetil (CellCept) in Myasthenia Gravis
Clinical trials are experiments conducted using human participants that seek to determine the value of a potential treatment, such as a drug, dietary supplement or exercise program. Most trials compare a treated group of participants with a “control,” or comparison, group, which receives an inert substance (“placebo”) or a sham treatment.
Many trials are divided into phases, the first of which is usually quite small and almost always designed only to assess the safety of the new treatment and how well it’s tolerated. Phases 2 and 3 of a trial are larger and address questions of effectiveness and dose.
The term “study” implies either a trial or a more general research question under investigation, such as how many people with a certain set of symptoms have a particular genetic change or how parents cope with raising a child with a disability. Personally, I was excited to see these studies going. While I'm not eligable to participate in any of the studies, I've never been (my doctors always seem to have me on the treatments being investigated, therefore, not eligable for study) it is exciting to see that they are far enough to be in these stages of trial. My doctor often gets his treatment information from the MDA, and what they think is coming down the pike. I talk to myasthenics all across the country. Those of us who have doctors who follow the MDA protocol have better success, better treatments and are more knowlegeable about our disease than those who don't, even if we don't avail ourselves to the MDA clinics ourselves.

This Weekends Dedicated Posts

Pearls and Dreams

This weekend, Labor Day Weekend, I will be doing a series of postings on the Muscular Dystrophy Association, and it's benefits for Myasthenia Gravis, as well as why Myasthenics need the MDA. I may post just once a day, I may post several, as the mood hits.
We'll just see how the weekend plays out.

The thing I want to get across the most is, that by Monday, when the MDA telethon crosses your television sets ... you remember that you are in the blog world with a Jerry's Kid. A very very lucky Jerry's Kid, but a Jerry's Kid none the less ... who, if not for people who donated 40 years ago ... probably would not be here to write about it today. That's how far the MDA research has brought the disease. So, when the telethon starts on Sunday and runs into Monday, please, consider donating.

This years Telethon is Jerry Lewis's 41st Telethon for the MDA ... I'm 41. Kind of weird!

I grew up with Labor Day weekend being my absolute favorite. The Mariposa County Fair was labor Day weekend, and it closed around 10 am to noon on Monday. Since we didn't have animals, we usually went straight home. The first thing my sister and I did was turn on the telethon. We'd save up our entire allowance from August to be able to call in the pledge. We knew by the time the pledge sheet got there, we'd have 6 weeks to give. $6. It wasn't much. But it was all. The girls on the phone seemed excited to take it, they didn't notice it was $6, not $60 or $600.

By the time I was a teenager, it was $30. That $30 seemed even less significant to me than the $6 had when I was 7. But 15, I understood the value of a dollar. But, it was still all I had. And I gave it. Because it was all I had.

I never knew anyone with MD. Nor ever ever expected to know anyone with it. It was just something that touched me when I was about 5. I had to help them! I remember this one lady, her words slurred, and her eyelids dropped as she tried to talk to the person interviewing her. Her toddler daughter tried to climb into her lab, and she started to lift her, and she was unable to pick her past her knees. I can remember thinking at that age, that she'd must have had a stroke like my neighbor did. It must be hard for a mommy to have a stroke when it's normally grandmommies.

Now, thinking back, it was most likely Myasthenia Gravis that caught my attention and drew me into the MDA, if not MG, then ALS. God knew what my heart needed to see to draw me to it ....

It's weird how when you pay attention to the path in your life how you can see how they all form together to make a road.

The MDA covers MANY MANY neuromuscular diseases. Muscular Dystrophies are only a few of them.

Alternate names and commonly used abbreviations are given in parentheses)

Muscular Dystrophies:

Duchenne Muscular Dystrophy (DMD) (Also known as Pseudohypertrophic)
Onset: Early childhood - about 2 to 6 years.
Symptoms: Generalized weakness and muscle wasting affecting limb and trunk muscles first. Calves often enlarged.
Progression: Disease progresses slowly but will affect all voluntary muscles. Survival rare beyond late twenties.
Inheritance: X-linked recessive (females are carriers).

Becker Muscular Dystrophy (BMD)
Onset: Adolescence or adulthood.
Symptoms: Almost identical to Duchenne but often much less severe. Can be significant heart involvements.
Progression: Slower and more variable than Duchenne with survival well into mid to late adulthood.
Inheritance: X-linked recessive (females are carriers).

Emery-Dreifuss Muscular Dystrophy (EDMD) [read more]
Onset: Childhood to early teens.
Symptoms: Weakness and wasting of shoulder, upper arm and shin muscles. Joint deformities are common.
Progression: Disease usually progresses slowly. Frequent cardiac complications are common.
Inheritance: X-linked recessive (females are carriers).

Limb-Girdle Muscular Dystrophy (LGMD) [read more]
Onset: Childhood to middle age.
Symptoms: Weakness and wasting affecting shoulder and pelvic girdles first.
Progression: Usually progresses slowly with cardiopulmonary complications often occurring in later stages of the disease.
Inheritance: Autosomal recessive, X-linked recessive.

Facioscapulohumeral Muscular Dystrophy (FSH or FSHD) (Also known as Landouzy-Dejerine)
Onset: Childhood to early adulthood.
Symptoms: Facial muscle weakness, with weakness and wasting of the shoulders and upper arms.
Progression: Progresses slowly with some periods of rapid deterioration. Disease may span many decades.
Inheritance: Autosomal dominant.

Myotonic Dystrophy (MMD) (Also known as Steinert's Disease) []
Onset: Childhood to middle age.
Symptoms: Generalized weakness and muscle wasting affecting face, feet, hands and neck first. Delayed relaxation of muscles after contraction. Congenital myotonic form is more severe.
Progression: Progression is slow, sometimes spanning 50 to 60 years.
Inheritance: Autosomal dominant.

Oculopharyngeal Muscular Dystrophy (OPMD)
Onset: Early adulthood to middle age.
Symptoms: First affects muscles of eyelid and throat.
Progression: Slow progression with swallowing problems common as disease progresses.
Inheritance: Autosomal dominant.

Distal Muscular Dystrophy (DD) Onset: 40-60 years.
Symptoms: Weakness and wasting of muscles of the hands, forearms and lower legs.
Progression: Slow progression but not life-threatening.
Inheritance: Autosomal dominant.

Congenital Muscular Dystrophy (CMD)Onset: At birth.
Symptoms: Generalized muscle weakness with possible joint deformities.
Progression: Disease progresses very slowly. Fukuyama form is more severe and involves mental functions.
Inheritance: Autosomal recessive, autosomal dominant.

Motor Neuron Diseases:

Amyotrophic Lateral Sclerosis (ALS) (Also known as Lou Gehrig's Disease)
Onset: Adulthood.
Symptoms: Generalized weakness and muscle wasting with cramps and muscle twitches common.
Progression: ALS first affects legs, arms and/or throat muscles. Usually progresses rapidly with 3 to 5 year average survival.
Inheritance: Autosomal dominant, autosomal recessive.

Infantile Progressive Spinal Muscular Atrophy (SMA, SMA1 or WH) (Also known as SMA Type 1, Werdnig-Hoffman)
Onset: Before birth to 3 months.
Symptoms: Generalized muscle weakness, weak cry, trouble swallowing as well as sucking, and breathing distress. Cannot sit up.
Progression: Progresses very rapidly with early childhood death.
Inheritance: Autosomal recessive.

Intermediate Spinal Muscular Atrophy (SMA or SMA2) (Also known as SMA Type 2)
Onset: 6 months to 3 years.
Symptoms: Weakness in arms, legs, upper and lower torso, often with skeletal deformities.
Progression: Disease usually progresses rapidly and respiratory problems may develop.
Inheritance: Autosomal recessive.

Juvenile Spinal Muscular Atrophy (SMA, SMA3 or KW) (Also known as SMA Type 3, Kugelberg-Welander)
Onset: 1 to 15 years.
Symptoms: Weakness in leg, hip, shoulder, arm and sometimes respiratory muscles.
Progression: Disease progresses slowly. Wheelchair often required later in life. Life span usually not affected.
Inheritance: Autosomal recessive.

Spinal Bulbar Muscular Atrophy (SBMA) (Also known as Kennedy's Disease and X-Linked SBMA) Onset: Adulthood (20 to 50 years - variable severity).
Symptoms: Weakness and muscle wasting of bulbar region (mouth and throat) and skeletal muscles. Usually affects only men -- women as carriers may have a mild form. Facial fasciculations and mild sensory involvement are common.
Progression: Slow, variable progression, sometimes accompanied by breast development, infertility and testicular wasting in men. Normal life span.
Inheritance: X-linked recessive (females are carriers).

Adult Spinal Muscular Atrophy (SMA)
Onset: 18 to 50 years.
Symptoms: Generalized weakness and muscle wasting with muscle twitches common.X-linked form affects men only and involves muscles of mouth and throat as well as other muscles.
Progression: Variable disease progression. Relatively mild form of SMA with little impact on life expectancy.
Inheritance: Autosomal dominant, autosomal recessive.

Inflammatory Myopathies:

Dermatomyositis (PM/DM)
Onset: Childhood to late adulthood.
Symptoms: Weakness of neck and limb muscles. Muscle pain and swelling common. Skin rash typically affecting cheeks, eyelids, neck, chest and limbs.
Progression: Disease progression and severity vary among individuals. Often responds to drug therapy.

Polymyositis (PM/DM)
Onset: Childhood to late adulthood.
Symptoms: Weakness of neck and limb muscles. Muscle pain and swelling common. Sometimes associated with malignancy.
Progression: Disease severity and progression vary among individuals. Often responds to drug therapy.

Inclusion Body Myositis (IBM) Onset: After age 50.
Symptoms: Weakness of arms, legs and hands, especially thighs, wrists and fingers. Sometimes involves swallowing muscles.
Progression: Slowly progressive. More common in men than women.

Disease Of The Neuromuscular Junction:
**************************************************************
Myasthenia Gravis (MG)

Onset: Childhood to adulthood.
Symptoms: Weakness and fatigability of muscles of eyes, face, neck, throat, limbs and/or trunk.
Progression: Disease progression varies. Drug therapy and/or removal of thymus gland sometimes effective. This is the disease I was diagnosed with when in 1992. I had my thymus removed, and I'm on Cellcept (immunosuppression, Prednisone and Mestinon) I also have had plasmapheresis, IVIG therapy ... and probably some other stuff I'm not thinking of right now.
**************************************************************
Lambert-Eaton Syndrome (LES)
Onset: Adulthood to middle age.
symptoms
Weakness and fatigue of hip muscles with aching back and thigh muscles common. Lung tumor is sometimes present.
Progression: Progression varies with success of drug therapy and treatment of any malignancy.

Congenital Myasthenic Syndrome (CMS) [Onset: Infancy or childhood, can be later.
Symptoms: Generalized weakness and fatigability of voluntary muscles, including those controlling mobility, eye movement, swallowing and breathing.
Progression: Varies in severity, and weakness can fluctuate.

Myopathies Due To Endocrine Abnormalities:

Hyperthyroid Myopathy (HYPTM)
Onset: Childhood to adulthood.
Symptoms: Weakness of upper arm and upper leg muscles. Some muscle wasting.
Progression: Usually improves with treatment of underlying thyroid condition.

Hypothyroid Myopathy (HYPOTM)Onset: Childhood to adulthood.
Symptoms: Weakness of arm and leg muscles. Stiffness and muscle cramps common.
Progression: Usually improves with treatment of underlying thyroid condition.

Diseases Of Peripheral Nerve:

Charcot-Marie-Tooth Disease (CMT) (Also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy (PMA))
Onset: Childhood to young adulthood.
Symptoms: Weakness and atrophy of muscles of hands and lower legs, with foot deformities and some loss of sensation in feet.
Progression: Slow but variable progression among individuals. Normal life span.
Inheritance: Autosomal dominant, autosomal recessive, X-linked recessive, X-linked dominant.

Dejerine-Sottas Disease (DS) (Also known as CMT Type 3 or Progressive Hypertrophic Interstitial Neuropathy)
Onset: Early childhood.
Symptoms: Same as CMT, but more severe.Delayed motor development in childhood. Weakness and muscle wasting affecting hands and lower legs. Variable loss of sensation in feet.
Progression: Severity and progression of disease vary.
Inheritance: Believed to be autosomal dominant.

Friedreich's Ataxia (FA)
Onset: Childhood to adolescence.
Symptoms: Impairment of limb coordination, with weakness and muscle wasting.
Progression: Severity and progression of disorder vary. Often associated with diabetes/heart disease.
Inheritance: Autosomal recessive.

Other Myopathies:

Myotonia Congenita (MC) (Two forms: Thomsen's and Becker's Disease) Onset: Infancy to childhood.
Symptoms: Muscle stiffness and cramps usually occurring after periods of rest. With activity, returns to normal muscle function.
Progression: Condition causes discomfort but is not life-threatening.
Inheritance: Autosomal dominant, autosomal recessive.

Paramyotonia Congenita (PC)
Onset: Childhood to early adulthood.
Symptoms: Poor or difficult relaxation of muscles, which may worsen after repeated use or exercise. Often may be associated with hyperkalemic periodic paralysis.
Progression: Condition causes discomfort throughout life but is not life-threatening.
Inheritance: Autosomal dominant.

Central Core Disease (CCD)
Onset: Early infancy to childhood.
Symptoms: Delayed motor development. Hip displacement at birth not uncommon.
Progression: Variable severity and progression. May be disabling.
Inheritance: Autosomal dominant.

Nemaline Myopathy (NM)
Onset: Early childhood.
Symptoms: Delayed motor development. Weakness of arm, leg, trunk, face and throat muscles.
Progression: Severity and progression vary. Life expectancy is threatened.
Inheritance: Autosomal dominant, autosomal recessive.

Myotubular Myopathy (MTM or MM)
Onset: Infancy.
Symptoms: Drooping of upper eyelids, facial weakness, blackout spells. Weakness of the limbs and trunk muscles. Reflexes usually absent.
Progression: Slow progression.
Inheritance: X-linked recessive, autosomal recessive, autosomal dominant.

Periodic Paralysis (PP) (Two forms: Hypokalemic - HYPOP - and Hyperkalemic - HYPP)
Onset: Childhood to adulthood.
Symptoms: Episodes of generalized muscle weakness with periods of paralysis affecting arms, legs and neck. Hyperkalemic type may be associated with paramyotonia congenita.
Progression: Frequency of attacks and severity vary. May respond to drug therapy.
Inheritance: Autosomal dominant

Metabolic Diseases Of Muscle:

Phosphorylase Deficiency (MPD or PYGM) (Also known as McArdle's Disease)
Onset: Childhood to adolescence.
Symptoms: Muscle cramps usually occurring after exercise. Intense exercise can cause muscle destruction and possible kidney damage.
Progression: Variable severity and progression.
Inheritance: Autosomal recessive.

Acid Maltase Deficiency (AMD) (Also known as Pompe's Disease)
Onset: Infancy to adulthood.
Symptoms: In infant form, disease is generalized and severe, with heart, liver and tongue enlargement common. Adult form involves weakness of upper arms and legs, trunk and respiratory muscles.
Progression: Progression varies.
Inheritance: Autosomal recessive.

Phosphofructokinase Deficiency (PFKM) (Also known as Tarui's Disease)
Onset: Childhood.
Symptoms: Muscle fatigue that, upon exercise, can lead to severe cramps, nausea, vomiting, muscle damage and discoloration of urine.
Progression: Progression varies widely.
Inheritance: Autosomal recessive.

Debrancher Enzyme Deficiency (DBD) (Also known as Cori's or Forbes' Disease)
Onset: Early childhood in first year.
Symptoms: Generalized weakness and muscle wasting. Enlarged liver in infancy. Episodes of low blood sugar.
Progression: Slow to variable progression. Muscular symptoms may be delayed until early teens and adulthood.
Inheritance: Autosomal recessive.

Mitochondrial Myopathy (MITO)
Onset: Early infancy to adulthood.
Symptoms: Generalized muscle weakness, flaccid neck muscles and inability to walk. Brain is often involved, with seizures, deafness, loss of balance and vision, and retardation common.
Progression: Wide variety of progression and severity.
Inheritance: Maternal mitochondrial gene (mtDNA).

Carnitine Deficiency (CD)
Onset: Early childhood.
Symptoms: Varied weakness of shoulders, hips, face and neck muscles.
Progression: Progression varies and carnitine supplementation is often effective.
Inheritance: Autosomal recessive.

Carnitine Palmityl Transferase Deficiency (CPT)
Onset: Young adulthood.
Symptoms: Inability to sustain moderate prolonged exercise. Prolonged exercise and/or fasting can cause severe muscle destruction with urine discoloration and kidney damage.
Progression: Severity varies.
Inheritance: Autosomal recessive.

Phosphoglycerate Kinase Deficiency (PGK)
Onset: Childhood to adolescence.
Symptoms: Muscle pain and weakness, with muscle damage and urine discoloration possible after vigorous exercise.
Progression: Severity varies. Avoid intense exercise.
Inheritance: X-linked recessive, autosomal recessive.

Phosphoglycerate Mutase Deficiency (PGAM or PGAMM)
Onset: Childhood to adulthood.
Symptoms: Muscle pain, cramps, muscle damage and urine discoloration possible during intense exercise of brief duration.
Progression: Severity varies. Avoid intense exercise.
Inheritance: Autosomal recessive.

Lactate Dehydrogenase Deficiency (LDHA)
Onset: Childhood to adolescence.
Symptoms: Exercise intolerance with muscle damage and urine discoloration possible following strenuous physical activity.
Progression: Severity varies. Avoid intense exercise.
Inheritance: Autosomal recessive.

Myoadenylate Deaminase Deficiency (MAD)
Onset: Early adulthood to middle age.
Symptoms: Muscle fatigue and weakness during and after exertion, with muscle soreness or cramping. May not attain prior performance levels.
Progression: Severity varies. Usually nonprogressive and non-debilitating.
Inheritance: Autosomal recessive.

Dr. Suess

Wednesday, September 27, 2006

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