The Ice Bucket Challenge for ALS

Unless you just crawled out from under a rock you have probably already heard of the Ice Bucket Challenge. The challenge is simple: People make a video of themselves dumping a bucket of ice water on their heads, post it on Facebook, Instagram or other social media sites, and then challenge friends to do the same within 24 hours or donate $100 to ALS. (Many do both.)

 It began with Pete Frates, a 29-year-old former college baseball player, who has been battling ALS since 2011. Pete who can no longer speak or move his arms and legs, first posted his challenge to friends on Facebook in late July. The challenge spread quickly through Boston circles, then across the web until last week when a parade of celebrities, athletes and corporate executives began to join in: Bill Gates, Lebron James, Jimmy Fallon, Taylor Swift, Kobe Bryant, Martha Stewart, Oprah Winfrey and even Ethel Kennedy to name a few. The challenge is taking social media by storm with over 1 million videos posted on Facebook and over 2 million tweets on Twitter. More importantly, the Ice Bucket Challenge is making real change. It has brought much-needed awareness to ALS and has raised over $14 million in the last 2 ½ weeks (compared to $1.3 million raised over the same period last year.)

My daughters, nieces (Kelsey, Allison, Michelle, Katie, Holly and Kelly)… and Jonny (Kelsey’s boyfriend) decided to join in, making a statement of support for this old man. I, at first, was going to join them. It would have been fun. But, after thinking about it for a while, I realized that Kathy would then have to lift, move my body, arms and legs to disrobe, dry then change me into new dry clothes. It was too much to ask.

The participants have all been soaked with buckets of ice and water. The challenges have been made. The first responses are beginning to come in. Christina, a coworker back in Fontana, and her husband Maru have joined in. They saw the girl‘s video post on Facebook and have started their own challenge in support.

As I view these videos, I am surprised at how much it impacts me. How such a simple stunt can warm the heart and brighten the soul. Each post is an action greeting card… a I’m there with you, supporting you gesture. It brings a smile and a whispered “Thank You.” You’ve joined me for a day, to walk with me, on this journey with ALS.

On behalf of all those afflicted by this terrible disease, a much heartfelt appreciation and thank you to all who participate!

Won’t you join in?

Footpad Mouse Buttons

Yesterday was a good day. After lunch, Doug came over with the new gadget he had been working on. It is a footpad to place on the foot rest of my wheelchair. Embedded in it are 2 switches, one for each foot. Connected to the switches is a wire which goes up to the mouse. This device will allow me to click the mouse buttons with my feet.

I have been steadily losing control of my last remaining hand. Although I can still move 2 fingers and a thumb, they have become too weak to click the mouse. Right now, using Dragon (voice recognition software), I am still able to “click” the mouse. I say “mouseclick” or “right mouseclick” and Dragon recognizes my verbal commands and does the clicking for me.

Dragon works, but compared to clicking with your finger, it’s slow. It takes time for the computer to figure out what I’m saying then to click the mouse. I’m not complaining, because I know without it I wouldn’t be able to use this computer. It is my lifeline to the world. But, because it is slow, it makes many tasks cumbersome and hard to do. I also, can’t click and hold the mouse button down. So, dragging items and selecting items on the screen are almost impossible to do.

I’m excited. When we tried it, the prototype worked well, better than we expected. We made a few minor changes. Doug will make some adjustments this week and should have it ready by next. With it, I should gain a lot of functionality back. I anticipate by using my feet, mouse clicking should be easy once again. 

This is good. It will be nice, for a change, to have the day where I will be able to do more, not less, than the day before.

Thanks Doug!

How Are You Doing?

How are you doing?

It’s been a while, so I thought I would give everyone a status update. “How are you doing?”, that is usually the first question everyone asks when they haven’t seen me for a while, understandable since with Al, my physical status is always changing. Well, to answer that question for all who have seen me in a while, I’m weaker; much, much weaker.

I have named my current condition stage 3. Stage 1 was where I could compensate for my loss of function by simply changing how I did things. Stage 2 was where I could no longer adapt on my own and needed Kathy’s assistance to maintain functionality. Now at stage 3, Kathy’s is no longer strong enough to compensate for my weakening condition. We now require an ever growing number of adaptive devices to perform my daily tasks. Our house is looking more and more like garage as we acquire an ever-growing collection of adaptive devices: Hoyer lift, BiPAP machine, oxygen concentrator, portable commode, power wheelchair, transport wheelchair, portable lift to name a few.

My decline has also given rise to a curious anomaly which has complicated my life. My legs swell now whenever I sit. Even with support stockings I can only sit for half a day before my legs become painfully swollen. To complicate matters, when my legs swell they weaken. What little strength I have left in my legs to stand and shuffle is gone further complicating the task of moving me one place to another. As a result, in order to preserve my legs, I spend most of my day in bed with my legs in the elevated position.

Thankfully, I can still use the computer while in bed. Although, I've lost most of the use of my arms and hands, I still have enough function in my right hand to control the mouse. And, although I haven’t been able to use a keyboard in a while I can still speak clearly I use Dragon Naturally Speaking, a wonderful program that allows me to continue to type by speaking. I am using it now to write this blog.

As you can see, I’m very weak now. I envy the strength of a 90 year old. Kathy helps me with virtually everything. Without her, I would just lay in bed all day. I need her help to sit up, transfer to my wheelchair, eat, dress, bathe to name just a few. She is a warrior; continually, throughout the day, she helps me with whatever I need to do. Devoted, without ever a complaint, she is always there to help me. When I tell her how sorry I am that fate has made her my caretaker, she cheerfully quips, “I made a promise to be with you in sickness and health.” Never once, has she made me feel like a burden. She is my rock.

Despite all this, we still laugh, joke and smile. Life is different but it is still good. ALS changed my perspective, life is fleeting, precious. We have less, but savor what we have and it is enough – life is still good. The funny part about this is that when I am among people and I sit and listen; I often hear complaints, what’s wrong with life. How odd it is to hear that. Life is too brief, too precious to miss all that is good about it.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.                          

2 Corinthians 4:16-18

Speaking at Trinity Nazarene Church in Monterey Park

Last Sunday, it was my privilege to speak at Trinity Nazarene church in Monterey Park. This was the first time I was to deliver the main message of a worship service. A bit nervous I sat there during the worship songs, wishing I was better prepared. It’s not that I didn't try, there’s something about me and putting words on paper. I spent all of the last 3 weeks working on this talk and 1 to 2 weeks before that contemplating of what I wanted to say: outlining my ideas, taking all the experiences, emotions, revelations and experiences in trying to weave it into an understanding testimony of what I had experienced and learned on this journey.

I’m not good at this, and this preparation was revealing it in spades. Writing, rewriting and rewriting again, I took one approach then another, trying to best express my thoughts. If it wasn’t for Word for Windows, an old-fashioned typewriter attempt would have buried me under a mountain of balled– up, crumpled rejects.

It’s not that I didn’t know what to say. It was that there was so much in my mind. Snippets of experiences, observations, feelings, conclusions and questions; all the things that I’ve collected along my journey with ALS were bouncing around in my head like bingo balls in the spinning cage; each banging around vying to escape onto the paper.

The night before I was to speak, I looked at it once again. I know, I know this talk should have been finished and in the can a week ago. Believe me, I TRIED. It didn't happen. When I reviewed it this time, I hated it. Ideas I liked before, missed the point. I glossed over points that upon review should have been emphasized. I was angry: disappointed at letting down everyone who had put faith in me and missing a wonderful opportunity to witness for Christ. I asked God, “Why do you do this!? I work so hard to share what you have taught me and it comes out like crap!” I am a reject. I can’t do these things. I should never do this.

In my heart, though, I knew this was wrong. I knew sharing is what God wanted me to do.  I had to be faithful and just keep pressing on. There is a purpose, he’s teaching me. I just have to be faithful. I cut-and-pasted, made major revisions, crazy for a talk that I’m presenting in the morning. Much of it now resembles how I’ve shared in the past. Something I wanted to get away from. I wanted something more sophisticated, but maybe, just maybe, this is what He wanted.

On the morning of service, I reviewed parts but did not review the whole– no going back now. The message was to be 30 to 40 minutes long; I had NO IDEA how long my message will be. As we drive, I’m nervous. It’s not overwhelming, just a low simmer of nervousness gnawing at my gut. It’s not because I’m afraid of how I’ll look if I fail – I’m terminal, why would I care about that? It’s because of the missed opportunity and all the people I’ll let down. At the end, I said to God, “You know I worked as hard as I could on this and I did it all for You. Okay, now it’s on you.”

As we sat in service, singing worship songs, I knew it would be my turn soon. Simmering up was that nervousness again; I kept thinking I wish I had done more. But, my mind turned to Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go”, I repeated the last part that God would be with me. It turned off the flame to the simmer. I felt good. These words were a reminder of my continual experience of His faithfulness – I knew He was there with me.

Now, was the time for my message. It started a little haltingly at first, but once I got up to speed the words and thoughts just flowed out. I felt like a ventriloquist’s dummy, sitting there, my mouth moved and the words came out. When we checked later, I spoke for 42 minutes, almost on the nose.  I hate to review my own talks. It’s not really for me to decide. But, people did come up, later; some with tears, to say what I had shared had touched them. Kathy did say it was good, as did others. I don’t know but I give God the credit on this one.

Reflecting back, perhaps it turned out this way so that God could let me know that the word spoken that day were His words, not mine. I’d like to think that this is why it happened this way. It sounds good.  But, the real reason is probably that I’m just disorganized, a crappy writer that needs a lot of work. There is an interesting side note to this: this blog/note – normally 3 day process for me to write – was done in one straight shot – a first.

God is good.

Thank You

Thank You everyone for your support of families afflicted with ALS. The LA County walk for ALS was a great success. There were 150 groups ranging in number from an gaggle of 92 to a dedicated individual of 1, each were there to support or in memory of a person stricken with this disease.

Our final tally: 32 friends and family walked with us that day; through your generous support, as of last count, $7,300 was raised. A special thanks to all who joined our ranks in the walk. Your company was special. Each of you joined on your own accord, volunteered, unsolicited; many taking up our cause as your own asking your own friends for support. And, to all of you who gave so generously, you gave more than what we could have asked. Many donated without being asked. Shirley - the one who started it all - had to continually set the team goal higher and higher: $200, $500, $1000, $1500... Each time a new goal was set ... It was exceeded. Even our final goal of $6500 was surpassed by $800.

Thank you all. Many families will benefit from your generosity and one day, hopefully, a cure will emerge. Most of all, our family is reminded, once again, of the very, very special community that has embraced us.

A Walk For ALS

This Sunday at Exposition Park in LA (new home of the Endeavour Space Shuttle) we will walk - I will ride my chariot - to raise awareness for ALS.

This walk, initiated by my sister-in-law, Shirley - Kathy's sister, came as a complete surprise to me. Never, ever, had I heard any word of walking. The first notice of her decision was a post on facebook. Although christened "Team Daniel", there was no team. Shirley, set out on this quest alone, her personal voice of protest against the injustice of this disease and to support a family she loved. I don't know if she expected others to join, perhaps so - knowing our family - but I could tell by the passion in her voice that it didn't matter. This is something she needed to do.

Almost immediately, Kathy was onboard with Sarah, my eldest daughter right after. It wasn't long before both our families had signed up, ready to walk. Kathy, Shirley and Sarah sent out a round of emails to good friends explaining our cause and requesting help in raising funds to battle ALS. I felt funny as the poster boy of this quest and being raised Japanese there is this thing of 'enryo' (a social etiquette of restraint) which made one especially uncomfortable in soliciting help in a cause that I was included. To push further would be imposing on others and contrary to my Japanese DNA. So any funds that a polite request would bring and the rally of our two families together was more than enough for me. I was touched by their thoughtfulness and looked forward to our walk.

Much to my surprise, it didn't stop here. One by one, people joined this quest. What started as a walk of one has grown to a walk (as of today) of thirty-two. What started as a modest fundraising goal of a few hundred dollars has, through your incredible generosity, been continually exceeded and raised so that the goal is now at a very close $6,500. This group that started so modestly now stands as one of the top 10 contributors in this Sunday's walk for ALS. Others joined in to cook lunch so we could properly thank all the walking participants. And Chris, who recently completed as a gift to me, a beautiful oil canvas of my journey with ALS, called in favors to affordably produce our team t-shirts featuring the painting. I am humbled by the generosity and compassion of so many, for a cause that is not their own. I did nothing to deserve this yet you opened your hearts and gave generously of your resources and time.

Many will say "Oh, it was nothing!". Please, do not underestimate what you do. From this side, it is everything. Each person is a voice of encouragement and collectively you speak volumes to lift the spirit of a traveler on journey such as this. This path can be desolate and lonely but the chorus of your voices remind me that I am not alone. ALS is my cross, my burden that I carry for Christ. I bear it willingly in order to testify to His love. But, what I see now, is that what you have done is join together and spiritually lift the burden of this cross from my shoulders to place across your own; to share, if only for a moment, the weight of this journey with this witness.

Thank You

Philippians 1:3-6 I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.

http://webgw.alsa.org/site/TR/Walks/GoldenWest?pg=entry&fr_id=8174

I fell

Well it happened. Yesterday, going down the stairs, I fell. They said it would happen eventually.... falling. It's part of the progression, my life with Al, my gait becoming more unsteady, my balance more unsure. It was a hard fall. A concussion and a broken/cracked rib. I've long lost that ability to catch my fall, to protect myself from injury. Outstretched arms when falling are now only a symbolic gesture of protection. An artifact of a prior healthy time when my arms were strong and could cushion my fall. Now, they simply crumple on contact, assigning impact absorbing duty to my face, shoulder and/or back. Fortunately, I've only fallen only once, about 9 months ago; increasing vigilance in face of unsteadiness has served me well up to now. Not sure exactly how this one happened. I can't recall much around the fall, but by best guess I lost my balance, my grip on the handrail and then went timber like a tree down the stairs. I don't know what went wrong, it was probably a misstep that caused me to go head first down onto the stairs. Kathy was just outside the front door when she heard the loud thud signaling my contact with the ground. Once inside, she saw me laying there on my back at the base of the stairs, legs sprawled up a step or two. My eyes open, unfocused, staring blankly at the ceiling. The lights were on but nobody was home. It was a like a solid right cross was delivered to my temple. My brain was out... scrambled and was now in reboot mode. At first, I just moaned, unresponsive then mumbled incoherently. Gradually I began to gather my thoughts but it was a solid hour before I could think straight enough to get up. Initially I didn't want to go but decided later that it would be prudent to get checked out. In the ER, CT of the head was negative, no damage except for the tender left temple and stiff jaw. X-Rays showed a break/crack in one rib in the back, second point of contact with the stairs. I'm okay now, not 100%, but doing well. The room still spins a bit when getting up or laying down. Getting up, laying down and moving about hurts. The pain from the rib combined with the muscle weakness makes it especially challenging to get up. I need more assistance now... Gotta work on it to regain more independence.