Ulrike has asked for no flowers or cards but instead if you would like to send something, you can donate to the ALS Association in Jason’s name. http://webwa.alsa.org or the the Orpe fund.
If she needs anything I will be sure to let people know.

Thank you

The ALS has definitely progressed. Jason is spending most of his time in bed as this is the most comfortable place for him and he has limited energy. (He has an amazing adjustable bed that is NOT a hospital bed.) He is taking frequent naps during the day and times them so that he and Jonas (and Ulrike) get to nap together. He is on oxygen at night and sometimes in the day if he is having difficulty breathing. There are good breathing days and bad breathing days. Jason is receiving all nutrition from a feeding tube but will sometimes eat something for the taste. His speech is pretty good still but has a low volume, especially when he is sleepy or has recently taken his meds. Being the nerd that he is, he has maintained his computer access with the use of a head mouse and a clicker in his hands. He still has good head movement but is having lots of difficulty moving his hands. He’s not doing a lot of driving himself in his wheelchair for the sake of the toes in the household.

Ulrike is still quite busy managing everyone and everything in the house including managing Jason’s care, coordinating CNA help, taking Jonas to pre-school and swimming lessons, battling the insurance company about getting services and equipment for Jason, and attempting to keep her sanity. Jonas has shot up and is a very energetic 2 ½ year old boy. He is loving preschool and loves to crawl all over daddy when he is in the wheelchair.

Jason and Ulrike shared their 4th wedding anniversary little over a month ago. They were able to have dinner at the Columbia Tower Club Restaurant which was where their wedding was held. They were given a private room and enjoyed some special and much needed time for just the two of them.

Please again, if you have any questions about how Jason and the family is doing, please direct your questions to me as Ulrike definitely has her hands full.

Thanks,
Megan Morris
megan.morris@gmail.com

 So a good friend of ours, Megan Morris, has volunteered to be the voice of our family. If someone wants to get an update on Jason’s condition, has questions regarding our family or just wants to pass on a message to Jason or my family (and wants an answer), that person can e-mail or call Megan and she will be our voice and write/call back. Megan gets weekly updates from us and if something out of the norm happens i.e. Jason getting sick again) she will be able to provideupdates for everyone.

 Megan’s info is:

Telephone:(206) 422 0796

e-mail: megan.morris@gmail.com

My mom gave me crap yesterday for painting “too rosy of a picture” regarding my ALS progression..So here are a few charts of my overall treatments and symptoms that I’ve been tracking on http://www.patientslikeme.com.

First off FRS and FVC:

Functional Rating Scale (FRS) Score helps you keep track of your overall condition by measuring symptoms in all parts of your body: head, chest, arms, and legs. You can ask your doctor to help determine your FRS score or answer some simple questions about the impact of ALS on your day-to-day life

(FVC) Score measures your lung strength and is an important indicator of overall progress. This is the important one because it measures the strength of the diaphragm and my ability to exhale. In other words as this goes down I’m closer to death. And Im getting retested on 1/20..

Here are my current symptoms:

Besides sharing our emotional journey we also wanted to add a level of transparency so you know how your contributions were used and how your help directly shaped our lives. Here’s a very short list:

• Wheelchair Accessible Mini Van (Braun Entervan)
• Lifts\elevators:  1 8ft and 1 12ft
• Motorized bed: Basically a fancy hospital bed
• Lift chair: A lazy boy that helps me stand and transfer
• Endless hours of volunteer work that led to our house being wheelchair accessible (an estimated 800 hours of people’s personal time was donated)
• Widening door frames, widening hallways, finish work
• Lift installation and subfloor reinforcements
• Major bathroom remodel that meets ADA standards (grip bars, heightened toilet, Toto wash let, no lip shower, wet room conversion, raised sink, special ADA faucets, and all the other stuff you need to complete a bathroom)

The key point to emphasize is that besides the structural work to our home everything will be donated to the ALS association once it will no longer be needed (i.e I croak). Your donations will carry forward to help others in need, other families just like ours who were struck by this disease out of nowhere. Again, thank you for the support. It will never be forgotten.

 Jason and Ulrike

Hey all,
Been battling demons for the past few months…I’ll write about those on the blog…Your emails and comments have been great and have really helped. Sorry for not replying…Typing is hard work. If you want to know how it feels try tieing five pound weights to the back of your hands and then bang out 100 words…You’ll get the idea. The good news is that Im getting my eyegaze system up and running so that should help me connect with the world at large…

So whats the status of the ALS? Not good news. My progression is maintaining maximum warp and Im losing functionaity…My legs are shot now and now need the power chair. I can still stand and transition but walking unassisted is out of the question. Im getting a feeding tube in a few weeks which should slow down the weight loss and will help me resume my daily glasses of Makers. Anyways, you get the idea…ALS sucks

What have I been doing? right now Im currently enjoying a little Social D radio on Pandora (hey Matt), choking down my second cup of vanilla creamed joe and ordering a trike for Jonas at Amazon for xmas. What else? Well, here’s the abriged list:

Lots of time with family
Got knocked out in September and ended up with a head gash in the ER. I think this fall deducted at least 15 IQ points. Something I can’t spare..
Finished Halo:ODST
Played Left for Dead
Writing to Jonas; Not as much as I should
Shopping for a van
Watching too much TV
Physical therapy
One or two naps per day
Too much time on the bidet..I love that thing
Went to the UW v Arizona game courtesy of Sark and had an awesome time. Bendik kept me in stitches and Stephanie was an amazing hostess. So good to catch up with old friends.
Went to the Seahawk\Jaguars game courtesy of my good buddy Rehan. Cant really comment on the game; was staring at the Seagals the whole time. I know, still a perv.
Turkey day was good. I almost died by choking on a deviled egg but Ulrike gave me the heimlich. That thing shot out with force. Can’t blame that on ALS.
Hung out with John Romero last saturday. Had an awesome time catching up while watching UW destroy Cal.
Now, just getting ready for xmas

Emotionally, Im on the upswing now (Thanks to John) and I’m gonna try and make regular postings from here on out….This post took 2.5 hours…Need to nap

“Have you been to the support groups?”
“You haven’t been yet? Oh, you should go”
“He has ALS? Oh, he should go to a support group.”
“Has he talked to any other folks with ALS? He should get their advice”

This wears on an individual and in time both Ulrike and I started to believe that we were missing out on something good; something helpful. After all, this advice is woven into most conversations about our ALS trials. A mind shift started to happen and we started chewing on the notion. But, we felt apprehensive and scared as support groups were a mystery; neither of us had been before. We started to wonder, hope, and believe that we could learn something vital if we went; that some key insight would be shared that would both elevate our spirits and carry us through our daily struggles.

Opportunity presented itself as an invitation to the ALS Evergreen Chapter annual ALS BBQ on Saturday August 8. As I read the e-maiI I suppressed my initial gut feeling to ignore it and just stared blankly at the screen. I knew it was time. Shit, I had ran out of excuses and maybe, just maybe, it was time to take a blind leap into the greater ALS community. So we went into it with an open heart and an open mind. Plus, secretly I had a morbid curiosity to see the PALS who were farther along in their progression. I wanted to step into the train wreck and see the carnage for what it is. Raw and unfiltered. It was time and I was tired of carrying the fear of the road ahead.

As we walked into the event we did a quick survey. My first thought: “Fuck, there’s a lot of people here.” Then I started looking for wheelchairs. Didn’t see any. No walkers either. Any young people? No. Didn’t see any. Just a mix of 50 some things and blue haired AARP members. “Goddamn it” I thought as the first realization sank in. “I’m the youngest PAL here.” As the afternoon moved on I met some really nice folks; Genuinely decent people. With my nametag blazing across my chest conversations began with “when were you diagnosed?” Which was really an in-direct question…”What’s your ALS story?” As I listened to their tales of pain, sadness, frustration, anger and hope “reality” decided to increase its assault and shift focus to my testicular region. As the deep down knowing in my gut sank in, I realized that not only was I the youngest PAL in attendance but I was also, collectively, the farthest along in my ALS progression with a diagnosis date of less than a year. These folks could all walk fine, talk clearly, some had hand issues that were worse than mine but the kicker was that the majority of them have had ALS now for 5 or more years. You gotta be fucking kidding me! That realization was not what I was expecting. It hurt. It was a low blow. Then the final realization hit me….in this scenario I was the train wreck.

We said our goodbyes with the best shit eating grins we could muster…..Throughout the event I hardly spoke to Ulrike. She had been chasing Jonas around and didn’t have a chance to sit down for a break. But, she met quite a few PALS that I hadn’t met and over the course of her conversations she had arrived at the same conclusions. As we walked to the car there was a long silence between us. Without words we both knew what was up and as soon as we were out of earshot with tears running down my face, I laughed, shook my head and said, “I’m fucked”. Upon hearing this Ulrike lost it. She cried and cried while I wrestled with feelings of dejection. The car ride back was mostly silent except for the roar of the road, Ulrikes sobs and the intermittent blurt of “It’s not fair” occasionally thrown in here and there.

But, Ulrike was pretty savvy with her weekend scheduling. She had a feeling we were going to be low in spirits, granted for other reasons, so she planned a get together with some of our friends; a couple that we always have a good time with. As we got closer and closer to their house the silence began to fade and we started talking. In doing so a mind-shift started to unknowingly happen. We realized that we didn’t need the ALS community to feel supported. After all, we’ve lived with this for almost a year now and if you know us, you would know that neither of us are passive when it comes to information or preparation. Experientially, I’m progressing fast. Shit, I’m a goddam’ bullet train. At the BBQ I needed and expected to see folks who are in chairs and using devices to talk. Which are the people I need to talk to. That’s my future. All of the PALS I saw at the bbq are where I was last January. Anyways, we started talking about our experience with ALS, the support that we have, and determined that it’s ok for us to not be involved in the greater ALS community. This is huge for us. We concluded that it’s ok not to need the “support group” advice if we don’t choose to. That we’re not missing anything by going on with our lives as it is. And as a matter of fact, we realized how very very fortunate we are to have the friends and family that we have.

A few weeks ago I posted a note on Facebook thanking everyone for their continued efforts and for the positive words on encouragement. In that note I shared a quote that my grief counselor shared with me:

“When someone is in crisis the people who are there for you are the ones you least suspect. And those you think will be there won’t be.”

I will say it again. These words ring true. In my case, countless people have volunteered their time, services, blood, sweat and tears to help me and my family. They, you, stepped up when it mattered most to us. You brought food, you took time off of work to volunteer for our remodel. You watched Jonas (which is not an easy task ) You took care of our yard or took me to a movie. You invited us to dinner or read my rambling blogs. You setup websites. You setup and manage bank accounts. You donated. You sponsored and drove fund raisers. You sent me email(s) or Facebook messages containing words of inspiration. You rallied the troops resulting in the MOJO that someone in my position needs day in and day out. Or, you simply listened and cried with us when we were down…..

As I think about it, I realize that it’s the collective whole that has elevated us the most. It’s this group, this community, this circle of friends both old and new who’ve banded together and reminded us that the battle is not lost, that life is good, that we do not walk alone, and that with you we can endure.

Ulrike and I will never be able to capture and express the gratitude that we feel. But please believe us when we say that we are sincerely moved by the generosity and demonstration of the human spirit you have show us. Often we talk about how we can reciprocate but we know we cannot at this point in time; and we know now it’s not expected of us. All we can do is humbly thank you from the depths of our hearts. You have changed our lives.