Lou Gherig's Disease

Hi all,

It is now just two weeks until I ride in the ALS DoubleDay Bike ride to support my friends Jeff and Marilyn Leer. I teach with Jeff, and he and his family found out about 9 months ago that Marilyn has ALS. He is a young guy (my age) with 2 young kids.

For the first time in my life I am doing a fund raising effort for someone other than myself. It feels good and I'm looking forward to the 85 mile bike ride too.

Our team is now a dozen members with a fundraising goal of $250 each. Our team (Marilyn's Army Too), combined with the original Marilyn's Army team could be the major fund raiser if we can all reach our target. I'm asking for any help to reach my goal of $250.

Below is an update from my friend Jeff on Marilyn's condition. It has gone so fast! I have included a link if you wish to make a pledge to my ride. Even $5 bucks would help.

Thank you and love to you all!
Ron


Some days just suck. This was one of those days. We got home from the ALS clinic after Marilyn's all day appointment with heavy hearts. The news was not good. Her respiratory tests showed what Marilyn had been feeling. Her lung capacity has gone from 65% to 28%. We have noticed a big difference in the last few weeks. She needs to take many breaths to finish talking now. The disease seems to be progressing rapidly and the test results bore that out. Our meeting with Dr. Ravits was heavy and dealt with end of life issues. We are to have a family discussion and meet with him next Wednesday. We have to decide if Marilyn will have a feeding tube put in. Her test results are lower than they would like in order to perform this procedure. If it is to be done, it must be done quickly. We also have to decide on what, if any, breathing assistance Marilyn will choose. Heavy issues and heavy hearts. But even in dealing with this, my wife is thinking of others. Dr. Ravits said he could meet with us next Wednesday at the end of the day. Mare asked him if that would be too much for him after a long day. He just smiled, amazed that this lady was worried about him and not about the news she had just received.
Prior to the appointment, Carmen and Lynn had taken Mare to the bathroom. Marilyn's right leg likes to slip and go to the side. While in the stall, her foot did just that and there was someone in the stall next to her. The girls remembered Senator Larry Craig and his bathroom escapades where he was accused of trying to hit on the person in the stall next to him by tapping his foot near the other stall. They started cracking up as they wondered what the other person must have been thinking. To make the story even better, the person in the other stall turned out to be our physical therapist. We had a good laugh at that one. It eased the awkwardness of the news of her tests.
The ALS Ride is a little over two weeks away. We have so little control over our lives right now. Pouring ourselves into this ride allows us to feel like we are doing something. Marilyn has been asked to speak at the PALS (Person with ALS) dinner. It is quite an honor. The other day, the Skagit Valley Herald came out and interviewed Mare and took some pictures. Her story will be in the Thursday edition 7/9/09 of the Skagit Valley Herald. It will be great press for the ride which has not received any press in the previous 8 years of the ride. We are currently 2nd in total money raised (when we add both our team and the "Marilyn's Army Too" which is the team from my school riding for Marilyn) and tied for 1st in total team riders. We would love to be first in both. I want to thank all of you that have sent us checks (2124 S. 15th St. Mount Vernon, WA 98274) or donated online.


How to pledge:
1. Log on to the official ALS DoubleDay Bike Ride and Fund Raiser web site:

http://webwa.alsa.org/site/PageServer?pagename=WA_Bike_event_info
2. Click on “Team List” from the menu at the left
3. Click on our team, “Marilyn’s Army Too” from the list of teams.
4. If you wish to join our team and ride, click on “Join Team” and follow the prompts
OR
5. If you wish to sponsor a rider, click on the name of a team member you wish to sponsor.
6. Click on the “Sponsor Me” tab and follow the prompts.

Mam Te Rad!

Hi guys, this is Jessie again. Thought I'd check back in, since I'm on the other side of the world and my dad insists that you're all interested! hahah.

So far my trip has been good! I've had the chance to see almost all of Prague, the most beautiful city I have ever seen. It really is spectacular, the whole city is made up of four to six level buildings with the prettiest arcitecture [sp?] ever. They're all side by side. It's definitely artsy, and original in it's own way. I've taken a billion and two pictures, and you can go see my myspace or facebook and see them in the albums I've posted!

I also went to Berlin, Germany yesterday. It's the first time I've been back since I was like... two! I showed my passport, which says that i was born in Germany everywhere I went, and I either got a discount or free stuff. So it was totally worth it. hah. We jumped on a tour buss that drove to all the big sites all over the city, we could jump off, and hang out, and then another bus would pick us up in 15 minutes. The best parts were definitely the Holocaust memorial, and Checkpoint Charlie, I've included pictures of both at the bottom of this!

As for life at the center... It's non stop. No lie. Every day we are working all day, daily house chores and building things, I get messssssy.

The biggest thing we do is our "Coffee House Ministry", It's like a street ministry. Four days a week we send out two teams, one walks the streets and the other goes to the homeless villages. I've done both, and both are insanely depressing. I wrote about the street team last time, now the village ministry. There's a huge, abandoned apartment building that about 20 families live in. It is the dirtiest, nasties, smelliest, most satan possesed place i have ever been in. It stank of "a sun roasted mixture of vomit, dehydrated urine, and rotting garbage".

Yes, I just quoted myself from my journal. The Autobiography of an Amazing Girl.

I didn't eat for the entire night and next day. I have never seen anything else like this before, there were thousands of flies, really, flying everywhere. To the point where we had to duck down not to inhale them. The first room inside the door was stacked over our heads with garbage. The stairs were either covered in mud or poop, i couldn't decide which it was. I wasn't breathing through my nose after that first whiff almost made me pass out.

We made it upstairs to where a family was living. I didn't know whether to cry or throw up when I saw the kids rooms, with neatly made beds with one dirty stuffed animal on each, and football sized rats running from our feet. This room was also filled with swarms of flies, and the corners with old needles and the little plastic bottles their parents get their drugs in.

There are 20 families that live in that building, and another 10 or 15 that live behind it. They bunker down under old raised rails for trains from the trainstation. There is a little "living room" area made up of broken and rotting chairs around a fire pit. There is nothing but garbage of the worst kind, feet deep, for at least 100 yards in any direction.

I've never seen anything like this in my life. Most people haven't. It's reall ythe kind of stuff you see on TV, on those cheesy commercials asking you to send money to Africa and stuff. Actually, I think it was worse. These guys don't need money, all it would do is fuel their drug and alcohol problems. They need God.

I don't really know what can drive someone to this point, but that is thanks to my parents. I was raised well. Don't worry Grandma and Grandpa, you bred my dad good. I thank Jesus every day that I never fell into drugs. I think that God gave me a special place in my heart for people who have, though. I didn't know why i was here until i got the chance to go to this apartment complex. I've also got a few pictures attatched below.

Thanks again, to all of you who contributed to my trip. Please keep me in your prayers! I have to run now, I don't have the privledge of unlimited internet access.

I would not trade this summer for the world.

Looking into one of the rooms in the apartments

Under the rails, the living room

Me doing my part, with the help of winterfresh, at the berlin wall!

Me hanging out in the Holocaust Memorial.

Me, Staining wood. Getting dirty.

Checkpoint Charlie, Berlin

Someone sleeps here. No joke, we woke them up.

*Great Get Away

My trip up to Tettagouche Stae Park was amazing! We hiked parts The Superior Hiking Trail. On the night we got there we put in about 4-5 miles, the next morning after a hearty breakfast we left camp at 8:30 and hiked all day. The trail started out as easy walking but the side trips we made to some overlooks got a bit rough in spots. I saw the most amazing sites from some of them but Mt Trudee won hands down!! I took some video from my digital camera and I will try to figure out how to get that here also. It was so windy on the top that the wind almost knocked me off my feet...Ed just happened to be taking a picture when it happened so you will see me in an odd stance. I was trying to catch my balance to keep from falling.
The pictures are in photo bucket album Tettagouche State Park. Some have titles, some do not.

Deb
The link is below.

http://s289.photobucket.com/albums/ll235/thejohnstonfamily_bucket/Tettegouche%20State%20Park%20Deb/