Answers about Multiple Sclerosis (to the best of my knowledge)

Due to several e-mails I have had from friends and family members having questions about Multiple Sclerosis I guess I will try and answer them all here. I didn’t think there would be so many questions (nosy people). ;o)

For information about MS go to this Multiple Sclerosis site.

MS does not run in families. Peter has been experiencing numbness in his face, shoulders and his left hand. His MRI’s indicate an abnormal brain (areas of myelin in the brain that are getting eaten away) – but the myelin spots that show up have not been getting bigger like in most MS cases. This has been going on for 18 months now. He has had at least two separate and distinct episodes of the numbness which used to be all they needed to diagnose MS. It can sometimes take a few years to diagnose (most people are diagnosed between 25 and 40 years old). He has had MRI’s nearly every three months plus a couple of other really fun tests.

The reason the doc ordered the spinal tap is because he was confused because Peter’s myelin spots in the brain have not been enlarging and the doctor wondered if it might be something else, but then Peter was experiencing numbness again. If the test is positive then he will be diagnosed with MS and begin medication immediately. If the test is negative then it could still be MS and it might not be. Some MS patients do not have this indicator show up in their spinal fluid. Twenty years ago, before some of the tests now available, he probably would have already been diagnosed with MS. There are a few other things that can mimic MS but it could still be a while before we know anything for certain.

His doctor says if Peter has MS then he will have a very good prognosis – those who start by having complete weakness in their limbs and have an inability to use their hands usually have a more difficult time with it and generally decline faster. Most people with MS live average life spans.

We are both OK with it if he does have it; the shock is quite over. Right now we are just struggling with the waiting game – uncertainty seems more frustrating than a positive diagnosis. It should not cause him to be unable to work (heaven forbid that I should have to be the family bread winner…)

If it does come back positive then he will meet with a medical board for the Air Force to discuss if he will stay in or if he will be medically retired. There are people in the Air Force who have MS and where Peter does not have a war time job our option would most likely be to stay in. Of course the medical board has the final say. If he is medically retired his MS would be taken care of through the VA (there is a slightly higher percentage of MS among military folks than in the general population so they have decided that this is something the VA will cover).

This could rock the boat – there is a chance that he might not be in the Air Force any more and we would be looking for a new place to live and a new job (but mom, don’t even think for a second that we would end up in Utah – that would be highly unlikely). With a Ph.D. in Electrical Engineering and a top secret security clearance and lots of contacts in the defense contract underworld (and a reputation of being competent) he would not have difficulty finding a job.

There, I hope that answers every ones questions… �

Oh, and I don’t think I will be able to get Annette Funicello’s, Alan Osmond’s or Ann Romney’s autographs for you…

Peter is a couch potato

After having several MRI’s and many other fun tests this last year, Peter thought it would be fun to have a lumbar puncture (spinal tap) today. We are still waiting to see if a diagnosis for Multiple Sclerosis will be official. If the test comes back positive then he will be diagnosed. If it comes back negative then we are where we were before – some people with MS do not have the problem that sometimes shows up with this test. Oh so frustrating. So Peter has to sit on the couch the rest of the day and is not very happy about it.

Anyway, that is our news for the week.

Sorry no new pictures… you’ll have to look at the old ones.

I have not taken a single picture of my delightful children this week so I am going to take you on a trip down memory lane. Peter and I were married ten years ago (August 18, 1998) and I have just been going through our wedding pictures and scanning them into our computer. The one thing I regret not doing for our wedding and reception is hiring a professional or even a not-so professional photographer. And it’s all my mom’s fault that I don’t have the negatives because she never keeps them (we got married a couple of years before the big digital camera craze). Here are a few pictures of Peter and I when we were dating and from our wedding:
How many guys do you know that wear a Christmas shirt in the summer? Peter still does it. I buy him a goofy Christmas t-shirt every year that he has to wear to the ward Christmas party (which he despises). However, he thinks it’s really funny to wear it the rest of the year.
This picture is one of my favorites. It was one of the pictures we had taken for our wedding invitations but not the one that was actually sent.
In front of the Jordan River Temple in South Jordan, Utah. There was only one other couple getting married there that day (it was a Tuesday). After Peter and I were married I went into the bride’s room along with the other bride and we both took some time to get ready for pictures. After my pictures with Peter and our both of our families were done I went back in to change and the other bride was STILL getting ready for her pictures.
Oh my gosh, we look so young – well, that’s probably because we WERE so young.

I will have more pictures of our wedding later because I have only scanned in about five so far. An arduous task!

Here is our week in a bullet list:

  • Sydney has started taking private swim lessons with the same teacher that she had for group lessons. Although it is costing me a pretty penny Sydney can now float on her back and do the monkey, air plane, soldier thing, she can dive down the the bottom of the pool to get a dive stick and she can swim about half the length of the pool. And the bonus is that Sydney LOVES swimming and going off of the diving board! Good job Syd.
  • Isaac has been getting quite good at going under the water. He likes to play in the water by the stairs and go under the water by himself. Yesterday at the pool he got very brave by putting his head under water and letting go of the edge of the pool (only about an inch away) for a couple of seconds and then he would grab the edge again. Any step in the right direction is good!
  • Peter and I got sunburned at the pool yesterday even though we put sunscreen on.
  • We cleaned out our garage and got rid of seven buckets of kids’ clothes that were sitting in our trailer. It always feels good to get rid of stuff!
  • I did some more furniture re-arranging (if you know me then you know this happens on a regular basis). I also cleaned out and organized three closets (I do not hire out).
  • Isaac keeps telling me that I have a friend named Sniggy Nee-uh. Do any of you answer to that name?

That’s all folks…

For the Audrey Hepburn poll I had a very hard time deciding which movie was my favorite. I remember watching Wait Until Dark at a sleep over at Audrey Madsen’s house when I was in junior high and all I can say is that we were appropriately freaked out. I will leave it to your imagination as to how we screamed and jumped when Alan Arkin turned on the light and jumped out of nowhere with a knife (he plays the roll so well it’s down right scary)! But this is not my favorite Audrey Hepburn movie (I do own this one but I won’t watch it without Peter. It is the only scary movie I like).

My faves have to be Charade and Roman Holiday. I own Charade and I just watched it this last week in honor of my poll and now I think I will have to get Roman Holiday on Netflix! I also own My Fair Lady and I LOVE the horse race scene but after seeing a live version of the musical that was pretty excellent I hardly watch the movie version any more. One movie on my poll I don’t like and that is Breakfast at Tiffany’s. Don’t make me watch it with you.

Now come check out my Dizzie Lizzie blog and vote for your favorite Emma Thompson movie! I have also been tagged but I need your help for this one!

The Johnson’s in Real Life

You know your kids are weird if….they sit in front of the TV absorbed in watching a cooking show (it’s called Good Eats on the Food Network – it’s hilarious!).
One last picture of my brother Tyler.
One last picture of my sister Megan. I only had a couple of days to teach her how to cook – she made a fried egg (sunny side up), a berry cobbler for a dessert, and in this picture she is cutting up chicken for a family favorite called Santa Fe chicken wraps. My mom has forgotten to teach Megan how to cook so she is going to have to come out again next year to finish her Cooking 101 class with me!
Mom, take my picture!
I couldn’t believe he actually wanted his picture taken.
He never cuddles up with me! This was a treat (and he even let me sit and finish my book).
“Fairylyn” A.K.A. Sydney.
Here is Sydney’s first completed sewing project! She even bought the material, lace and batting with her own allowance!
I love a man with dish-pan hands ;o)

Here’s our week in a bullet list:

  • We had lots of fun on Monday at the beach with Megan and Tyler – this was their first time ever seeing the ocean (I am not posting the beach pictures). Of course we had to take them to the Ron Jon surf shop in Cocoa Beach to find some souvenirs. They both enjoyed trying Indian food for the first time at our favorite local restaurant, Punjab.
  • Megan and Tyler had to go back to Utah on Tuesday. When they got home, Megan discovered a large Palmetto Bug in her suitcase! I just laughed when Tyler e-mailed me.
  • The bugs are out in full force here in Florida. I need to call the bug guy tomorrow to come and take care of some small red German cockroaches that I have found behind my upright piano. Yuck – these are the bad ones that will infest so it is important to take care of them ASAP. It is the price you pay to live in paradise…
  • Sydney put on a fabulous show for us this afternoon (after my 2 1/2 hour nap). She performed acts of daring stunts including balancing on a broomstick, juggling scarves and balancing the end of a peacock feather in the palm of her hand. We were also favored with many knock-knock jokes (the kind that are common in a seven-year-old’s repertoire of jokes – I’m sure you know what I’m talking about). She is still having a hard time at perfecting the interrupting cow knock-knock joke…
  • I got a fabulous haircut that I love! Thanks Aubrey! I had a couple of questions from friends wanting to know if Peter prefers my hair short or long. Peter refuses to answer – says I look good so matter what – I think he will take his PC opinion to the grave. Good answer Peter!
  • I have been on a reading rampage finishing three books in one week, and they were all excellent! Go to my Dizzie Lizzie blog and click on “book reviews” on the sidebar. I have new reviews for Emma by Jane Austen, Three Cups of Tea by Greg Mortensen and David Oliver Relin, and The Prize Winner Of Defiance, Ohio by Terry Ryan.

That’s all folks…

As to the poll for this last week, my favorite kind of ethnic food is Indian with a close second by Vietnamese (which no one voted for).

Budding Artists

Spiderman and Wolverine in Spiderman’s Car (That’s Why There’s So Many Wheels) by Isaac (I don’t get why that means there’s so many wheels either.)
Our Family On a Bus by Isaac
Meadow of the Horse by Sydney
A Bus by Sydney (This work was inspired by an earlier piece by Isaac)
Simple Egyptian Symbols by Sydney

Johnson Family Vacation 2008 – Savannah, Georgia

My sister Megan and my brother Tyler were visiting from Utah so we decided to take them to Georgia.

Isaac and Sydney

Peter and Liz

First stop: Old Fort Jackson

We got to see these re-enactment guys shoot a cannon ball at this Navy ship that was coming into port.
Peace on Earth
The kids’ favorite part of the whole fort was the officer’s privy.
For being a toilet facility, the officer’s privy sure has a nice view.

This fountain is found at Forsyth Park in downtown Savannah. It was built in 1854. When Sherman and his Union soldiers came through Savannah near the end of the Civil War, they did not burn the city because Sherman said it was too beautiful.

Trying on some hats at the Savannah History Museum. Sorry, I couldn’t get Peter to participate!

The Light Station on Tybee Island. We got to climb all 178 stairs to the top! It was hot and slow but worth it all once we reached the top. The view was beautiful and the air was breezy.
This is a crow named Edgar Allen Crow.
The view from the top of the lighthouse.

The view of the lighthouse atop a nearby battery.

Large tree at the entrance to Wormsloe Historical sight – Wormsloe is an old Georgia plantation that was started circa 1735 by one of Georgia’s first settlers.
I thought you might like to see one of the several cool spider webs we saw.
This is the ruins from the original home and fort built at the Wormsloe Plantation. Decendants of the original family still live in the family home that was built in the 1800’s.

The salt marshes.
Here is a picture of a Magnolia Tree just for my mom.
The rest of my family was looking at the camera – I must have been in la la land.
Tyler and Megan.
The “bottoms” of the Savannah Salt Marshes. I’m so funny!
Sydney is a budding textile artist.
The boys.
Here are some pics from the camp site.

“I don’t want to eat my delicious breakfast. I want fruit snacks.”

Peter doing the manly cooking.
This fuzzy caterpillar was crawling towards the tent and finally made its way climbing the tent so Peter went over and squished it onto the ground.
Here is the burial mound Sydney created for the fuzzy caterpillar.
Isaac is going to miss his Uncle Tyler.
After a torrential downpour of rain we decided to leave a day earlier than planned since Lake Titikaka decided to form in front of our tent.
We took down our camp sight in the middle of another rainstorm and then discovered a red ant hill under the tent. Peter got covered in red ants and so did the tent. The tent got thrown away. Peter is now recovering.
Some fun on the drive back home.

Here is our week in a bullet list:

  • My baby brother and sister are here visiting from Utah.
  • Our trip to Savannah, Georgia was lots of fun but now I’m glad we’re back home!
  • On the fourth of July we went to Tybee Island and were planning on staying the entire day to see a big fireworks show at night, but upon driving there we discovered it was an insane touristy island with backed-up traffic all over. We stayed to see the lighthouse and then went back to our camp site and just slept more that night. Oh, and we got a parking ticket but don’t bring that up with Peter – he is so mad about it.
  • Sydney lost a tooth at the camp site. She was playing on a teeter totter with Peter and he bounced her a little too hard. Her mouth hit against the metal and one of her top front teeth fell out and she got a nice fat lip.
  • I am never doing another blog posting this long!

That’s all folks…

And be sure to check out my Book Blog – I posted a picture of my new haircut and finished my review for the book Emma.