Dear Friends,

I know, I know… I probably should have written a while ago. But for those of you who have an inkling of what’s been going on medically in my life, you can probably understand why I haven’t.

As most of you have either heard or guessed by now, I have undergone a tracheotomy and am now reliant on a ventilator to breathe for me. I am lucky enough that I am still, for the moment, able to speak and eat. But along with this massive life change, there have also been positive changes as well. Kaylan and I have found the most perfect house for us. The layout of the house is the most perfect that we could have asked for considering the condition that we’re in. It even has a back yard for Smuchit, which makes him incredibly happy, which in turn makes us happy. I’ve also been blessed with the nurses from Bayada who have been taking very good care of me at home. Nurses like Lorin and Bill, as far as I’m concerned, have become part of the family already.

And then there are the other changes, which I am slowly coming to terms with. I no longer have any functioning limbs. There is some slight movement in my right arm and leg but neither of which can accomplish anything. While I can still eat real food, instead of pumping cans of medical food into my stomach, I cannot feed myself. I can’t control the tv remote and at this point, I can’t control the remote that helps me move the hospital bed. Even though I can still talk, my voice has changed dramatically. Certain words and phrases are nearly impossible to understand. I even have to wear a microphone that looks like something that Britney Spears would wear in order to be heard. There have been a slew of other medical problems that have followed the procedure. I have an unrelenting yeast infection under my scrotum and on my legs. I have a horrible, itchy case of psoriasis, which I can’t scratch. I am in constant unrelenting pain, particularly in my legs, which have an excruciating combination of neurological and muscular pain. Whoever said ALS is not a painful disease is a fucking idiot. I’ve been catheterized more time than I can count on my hands and this continues to happen still. Going to the bathroom has become an increasingly difficult chore and one in which I have no privacy. In fact, I no longer have any privacy at all. I have to live with the constant knowledge that without having someone around that knows how to operate the vent and who understand my condition fully, I will die. Everything feels like a gamble and although I have such good care around me, sometimes it’s hard not to dwell on that. It can be awfully scary living with this disease at any stage but this has been the hardest so far. I knew it would be.

I told myself three months is what I need to figure out how to rebuild myself into what is now my new body. I knew this would be hard, but I don’t regret for a minute that I did it. And I would encourage all ALS patients, particularly those who have a good support group, to take this step. I don’t find it an artificial means of living at all. I still have my full range of emotion in tact. Because I can get full deep breathes, in a sense I haven’t felt this good in ages. I have no doubts that I can fit my personality within these restrictions. As always, I am trying to dwell on the positive rather than the negative. During this time, there have been so many things that have made me happy (i.e. things that you can do to make me happy). I’m still able to eat food and even though I can’t prepare it, which was a passion of mine, the eating portion is just as enjoyable. I’ve enjoyed seeing so many of my friends and have been overwhelmed by the amount who have trained themselves to take care of me in this position. Although it takes a lot of work, being outside on a sunny day has never meant more. Please remember that although I can no longer hug you or shake your hands or bump fists, that it’s in no way because I don’t want to. When you see me, please hug me, shake my hand, stroke my head- because affection from my friends makes me feel safe. I can’t think of anything I miss more than being able to put my arms around someone, especially Kaylan.

So even if you can’t come over and give me a hug, know that I love you guys and appreciate you. The army has given me strength that I never knew that I had. And because of that, I will continue to do everything that I can to fight this horrible disease and stay alive.

Thank you and I love you all.

me

An interesting article about Dr. Chio, a professor of neuroscience at the University of Turin, and his study of ALS in soccer players in Italy. It was published in The Florence Newspaper written by Shannon Coleman.

Chio’s study included native Italian male professional soccer players who were on the team roster from 1970-2002 and played in at least one official match. 18 cases of ALS were found (3 cases were excluded because they were not Italian and 10 cases were excluded because they were before 1970) Researchers interviewed all living players with ALS and gathered family histories paying close attention to neuromuscular disorders. Specific questions were asked and include things like, soccer activity and which position he played and the teams he played for, major physical traumas and drug use. This study concluded that none of the players were affected by the inherited type of ALS. Rather, all of the players were affected by the “sporadic” type.

Read more…

Could there be a link with environmental toxins, head trauma or drug use? Who knows, but at least there is something to look into.

During the newest podcast of Savage Love, Dan had a caller ask how Tim was doing and Dan was nice enough to give Often Awesome a plug where his listeners could check out the series to see how Tim was doing. For those of you who don’t know, Tim and Catie Braly have a recording project called the Popovers and they wrote the theme song for Savage Love. We just wanted to thank him for for his continued support of the series and to thank all of his listeners who have followed Tim’s story. It means a lot to us and I know Tim is very appreciative.

Please check out Savage Love and you can also find Dan on Youtube and Facebook.

Darling Often Awesome Soldiers,

This morning, Tim received a voluntary tracheostomy at Moses Cone Hospital. He is in recovery and when he woke up, he made the surgeon say, “It’s a boy!” Typical Tim, maintaining his sense of humor through the pain.

He is not currently able to speak but can communicate via communication board and his eyetracking computer, which he’s getting quite good at. Apparently, they plan on changing the cuff ASAP and will potentially speak even better due to more breath and energy.

I will keep you all updated as things progress!

All my love,

lis

According to Andrew Gengos, president and CEO of Neuraltus, the company’s experimental drug is designed to flip a molecular switch in cells known as macrophages in the blood and microglia in the central nervous system.

“There’s a switch that it hits,” Gengos said, “that regulates these cells from an activated, inflammatory mode back to a more normal, wound-healing mode.” (For more about this phenomenon, see ALS: Not Just About Motor Neurons Anymore, in the May-June 2010 ALS Newsmagazine.)

Testing in ALS research mice has shown NP001 flips a molecular switch, turning certain immune system cells from damaging to protective.

Neuraltus is completing its mouse studies, and hopes to conduct a phase 1 safety trial of NP001 in people with ALS by fall 2010.

See the full article here.

It is the 846th drug that the Massachusetts lab ALS TDI has tried since 1999 to slow the progression of ALS.

And the first to work in lab mice. It’s expected to go to human trials next year, and Nieto hopes to be part of those trials.

“It’s the biggest thing that’s ever happened in ALS,” say Nieto and his wife Lynne – who themselves have been the biggest fundraisers in the history of the disease.

See the full article here. More information on 00846 can be found here.

To make a donation in Joe’s name…… 1) Go to www.TLCcares.org 2) Click on the Make a Donation link 3) Click on “Make a financial donation” 4) Use PayPal or send a Check.

To be truly inspired, please check out Carla’s blog here.

The ALS Therapy Development Institute (ALS TDI) announced today that it is supporting a new awareness campaign driven by several ALS patients diagnosed with the progressive neurodegenerative disease commonly known as Lou Gehrig’s disease before the age of 30. This campaign, called ‘Young Faces of ALS’, is designed and led by a group of seven young men and women and will consist of a group effort to visit each of the 30 Major League Baseball (MLB) parks during the 2010 baseball season. The Young Faces of ALS Campaign will leverage this national platform to educate people about how ALS can strike anyone and that there are no typical ALS patients. They hope to encourage greater action toward supporting on-going research at ALS TDI to slow and stop the disease. ALS TDI was co-founded by Stephen Heywood, who was diagnosed with ALS at age 29. Stephen lost his battle with ALS during the fall of 2008.

A grassroots movement, this Young Faces of ALS group is using Facebook and other online social media to share information about the campaign, including pictures from the games each of them attend. The group regularly meets via conference call or video call and works together to choose who will go to each game. The group also invites other ALS patients diagnosed at a young age to contact them and get involved with the campaign. An anonymous donor provided funding to execute their project and the group relies on their friends and other ALS patients in the cities they visit to help provide other forms of support.

Wherever the group goes they will be answering questions and fundraising via text message set up by the Institute. People can donate $5.00 to ALS research and in support of the Young Faces Campaign by sending ‘EndALS’ to 20222. A website is planned that will contain full bios, pictures and a blog regarding the group’s efforts and travels during the 2010 baseball season. This public awareness campaign is an independent effort and is not affiliated with MLB or any specific baseball organization. For more information, please email us at info@als.net.

See the full article here.