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.