Wishing everyone a happy new year.
Never let too much of tomorrow get in the way of today.
Saturday, December 31, 2011
Tuesday, December 27, 2011
Some Good News
My blood tests came back looking okay. Time to figure out schedules, and then let the drug trial begin!
Saturday, December 24, 2011
Eve
Amanda has been working on a toast for dinner tonight. Something about how as bad as some of our news has been this past year, it's also been a good year.
She's still working on it, and has asked for my feedback.
I think what she's trying to say is that, while we've had bad news, we've also had a bigger measure of love and support. Our share of happiness. Our share of fun. Here's to a wonderful holiday.
She's still working on it, and has asked for my feedback.
I think what she's trying to say is that, while we've had bad news, we've also had a bigger measure of love and support. Our share of happiness. Our share of fun. Here's to a wonderful holiday.
More Like It
Amanda joked that the RHCP aren't exactly in the Christmas spirit, so I'll post a different song to set things straight.
Before I do, I wanted to point out a new picture added to the Support Us page. An old favorite of mine...
But back to the Christmas spirit...Otis will set things straight (A slight delay as the owner spins up the 45 version!)
Before I do, I wanted to point out a new picture added to the Support Us page. An old favorite of mine...
But back to the Christmas spirit...Otis will set things straight (A slight delay as the owner spins up the 45 version!)
Up and Down
I like my music, in case you hadn't noticed. Amanda has been patient as I constantly flick through songs on the trips to Hopkins.
I feel like she was rewarded for her patience on our last trip...
...the last song on the trip up was
...and the last song on the trip home was
I feel like she was rewarded for her patience on our last trip...
...the last song on the trip up was
...and the last song on the trip home was
Friday, December 23, 2011
Thursday, December 22, 2011
A Gift
Several people have given money to support our family. Friends, family, and strangers have all been extremely generous.
The VMI Mens Soccer community deserves some time in the spotlight.
Richie invited me down to the locker room under the premise of getting my input on some carpentry he wanted done.
Instead, the entire team was there, along with Mr. Mallon, Mr. Rochow, Mr. Barnett, and Mrs. Seinifeld.
The team, and their family and friends gave our family flights to Florida, passes to Disney, and over $5,600. I could talk for days about how much this gift - and all the other gifts - mean to us, but this video says it best:
The VMI Mens Soccer community deserves some time in the spotlight.
Richie invited me down to the locker room under the premise of getting my input on some carpentry he wanted done.
Instead, the entire team was there, along with Mr. Mallon, Mr. Rochow, Mr. Barnett, and Mrs. Seinifeld.
The team, and their family and friends gave our family flights to Florida, passes to Disney, and over $5,600. I could talk for days about how much this gift - and all the other gifts - mean to us, but this video says it best:
Week In Review
Here goes...
This time last week, my Dad paid us a welcome visit to help with some work in the garden. The new swings and flower beds all got a fresh layer of mulch. Amanda's Dad pitched in; it turns out that we need two truck-loads to get things looking nice. Thanks to Pop and GinGin for all your efforts...Cora will also appreciate it when she takes her first spill off the swings!
Pop took the next day to tackle a hazard outside. We heat our house mainly through the use of an external wood furnace. It's proven to be extremely economical; the "fuel" costs approximately $300 for the entire heating season, and it also heats our household hot water. The problem is that getting to the wood storage involves navigating some steps that have proven quite slippery. I want to remain as active as I can, so replacing the steps was a much needed fix. Dad made an excellent start on the job -- digging out the ground to make for uniform steps has been time-consuming -- and will be back to finish up in the New Year.
We celebrated Amanda's birthday throughout last week; meals with David and Phyllis, Dad, Claudia and Renata and Aaron, Mike and Emily, and Mr. and Mrs. Rose completed a hectic period in our social calendar. I managed to take Amanda out for dinner and a movie - we both enjoyed the new Sherlock Holmes - before all crashing on Sunday!
The first few days of this week were quiet by comparison, but still fairly busy. Monday brought an amazing meeting with some wonderful people in the VMI Mens Soccer locker room - more on that later - before meeting with a committee of fine folks that will help coordinate the Conway Cup.
Of course, the biggest news of the week is my recent visit to Hopkins. My examination went fine, and we're waiting on my blood tests to make sure I qualify for the drug trial. I don't want to get my hopes up before the blood tests come back, but a successful set of results could see me starting a trial in mid-January. The drug doesn't do anything about the motor neuron loss, but it brings about a change in your muscles that returns some strength and function. Regardless of the blood tests, it feels good to be getting in to the trenches to help fight against ALS / MND.
This time last week, my Dad paid us a welcome visit to help with some work in the garden. The new swings and flower beds all got a fresh layer of mulch. Amanda's Dad pitched in; it turns out that we need two truck-loads to get things looking nice. Thanks to Pop and GinGin for all your efforts...Cora will also appreciate it when she takes her first spill off the swings!
Pop took the next day to tackle a hazard outside. We heat our house mainly through the use of an external wood furnace. It's proven to be extremely economical; the "fuel" costs approximately $300 for the entire heating season, and it also heats our household hot water. The problem is that getting to the wood storage involves navigating some steps that have proven quite slippery. I want to remain as active as I can, so replacing the steps was a much needed fix. Dad made an excellent start on the job -- digging out the ground to make for uniform steps has been time-consuming -- and will be back to finish up in the New Year.
We celebrated Amanda's birthday throughout last week; meals with David and Phyllis, Dad, Claudia and Renata and Aaron, Mike and Emily, and Mr. and Mrs. Rose completed a hectic period in our social calendar. I managed to take Amanda out for dinner and a movie - we both enjoyed the new Sherlock Holmes - before all crashing on Sunday!
The first few days of this week were quiet by comparison, but still fairly busy. Monday brought an amazing meeting with some wonderful people in the VMI Mens Soccer locker room - more on that later - before meeting with a committee of fine folks that will help coordinate the Conway Cup.
Of course, the biggest news of the week is my recent visit to Hopkins. My examination went fine, and we're waiting on my blood tests to make sure I qualify for the drug trial. I don't want to get my hopes up before the blood tests come back, but a successful set of results could see me starting a trial in mid-January. The drug doesn't do anything about the motor neuron loss, but it brings about a change in your muscles that returns some strength and function. Regardless of the blood tests, it feels good to be getting in to the trenches to help fight against ALS / MND.
Wednesday, December 21, 2011
Looking Good
All that remains is the results of my blood work. Aside from that, all the other tests look good...including my EKG
Tuesday, December 20, 2011
Overdue
I feel like a long blog post is long overdue. Unfortunately, that post isn't coming tonight.
Amanda and I are preparing for an early departure for Johns Hopkins. There's a feeling of one part excitement and one part trepidation as we prepare to hit the road. There's still a chance I won't be accepted into the trial, but the mere prospect of doing something to help with research in this field is very exciting.
Here's to a safe journey and good news...
Sunday, December 18, 2011
Friday, December 16, 2011
Thursday, December 15, 2011
Unite
Silly title for the video, but some things are expressed that have crossed my mind recently...
Wednesday, December 14, 2011
Medical Update
In the first stage of an ongoing phase 2 clinical trial to test the experimental therapy CK-2017357 in amyotrophic lateral sclerosis (ALS), the drug was found to be safe and well-tolerated.
Participants who received the highest dose showed improved scores on tests that measure motor and breathing function, muscle strength and fatigue.
CK-2017357 is designed to work by increasing muscle sensitivity to calcium, which in turn is expected to increase skeletal muscle force and improve muscle function.
The drug is the lead therapeutic candidate for ALS from South San Francisco biotechnology companyCytokinetics, and was granted “orphan drug” status by the U.S. Food and Drug Administration (FDA) in March 2010. (Orphan drug status provides financial incentives for the development of drugs for rare diseases.)
The phase 2 trial results were reported Nov. 30, 2011, at the 22nd International Symposium on ALS/MND in Sydney, Australia, by Jeremy Shefner, professor and chair of the department of neurology at Upstate Medical University, State University of New York in Syracuse. (Shefner directs the MDA/ALS Center at that institution, but MDA is not involved with this study.)
Birthday Girl
The run up to Christmas is getting busier and busier, and making frequent posts is becoming challenging.
Before things got too hectic, I simply want to wish Amanda a very happy birthday.
I love you
Before things got too hectic, I simply want to wish Amanda a very happy birthday.
I love you
Monday, December 12, 2011
Sunday, December 11, 2011
A Holiday Weekend
I've had a wonderful, long weekend.
Martin came in to town for a day to hang out, talk shop, get beaten at FIFA 12, and spend some time with the family. We had a fantastic time.
Mum and Dad, AKA Nana and Pop were our next visitors. Again, another wonderful visit: Dad and I built a swing for the girls - thanks to Claudia and SHC for the awesome supplies. We all put up the Christmas tree. And had the opportunity to have a dinner to celebrate Amanda's upcoming anniversary of her 28th birthday.
There were lots and lots of smiles, and you can't beat that. Plus the house is ready for the holidays!
Martin came in to town for a day to hang out, talk shop, get beaten at FIFA 12, and spend some time with the family. We had a fantastic time.
Mum and Dad, AKA Nana and Pop were our next visitors. Again, another wonderful visit: Dad and I built a swing for the girls - thanks to Claudia and SHC for the awesome supplies. We all put up the Christmas tree. And had the opportunity to have a dinner to celebrate Amanda's upcoming anniversary of her 28th birthday.
There were lots and lots of smiles, and you can't beat that. Plus the house is ready for the holidays!
Saturday, December 10, 2011
Support
As mentioned in a previous post, many people have been in touch asking what they can do to help support our family financially.
Please visit the new page in the menu above: Support Us
Please visit the new page in the menu above: Support Us
Tuesday, December 6, 2011
Money Well Spent
Just read the fine print of my brain MRI report. I believe, according to the report, that the MRI shows I have a stuffy sinus.
Glad the insurance covered 95% of the $1300 bill for that.
Glad the insurance covered 95% of the $1300 bill for that.
Ripple
The support I've had since my diagnosis has been staggering. I might almost describe it as a ripple effect.
Relaying the diagnosis to my family in October brought the first wave of support. Visits, phone calls, and hugs were in abundance.
Sharing my news with local friends here in 24450 brought another wave of support.
Posting the news on Facebook, and highlighting this site gave rise to another wave of support.
The most recent wave seems to have swollen up from people who have heard my news through word-of-mouth, and people that have known for a while that have had time to reflect on things.
In the past 16 hours, I've spoken with two people that fall in to that last category.
I caught up with Charlie, my college class president, late last night. I say late; technically it was during what I consider VMI business hours, so I can't complain about a late night call! Today, Spencer, a young man I coached in high school, and someone that has grown to be all-too-much of a nice guy, joined me for a lunchtime sandwich.
Interestingly, both guys wanted to talk about what they could do to help Amanda and our daughters. A similar theme arose when I spoke with Steve Ross about a charity football tournament. I've also heard the same sentiment from friends and family.
With such a growing desire to support my family, it seems like it's time I stop bristling at the idea of people helping us.
Irrespective of the idea of providing a way for people to support my family, all of the support -- emails, calls, hugs, visits, letters, text messages, and more -- has done a lot to raise my spirits, and that's putting it lightly.
Thanks to you all
Relaying the diagnosis to my family in October brought the first wave of support. Visits, phone calls, and hugs were in abundance.
Sharing my news with local friends here in 24450 brought another wave of support.
Posting the news on Facebook, and highlighting this site gave rise to another wave of support.
The most recent wave seems to have swollen up from people who have heard my news through word-of-mouth, and people that have known for a while that have had time to reflect on things.
In the past 16 hours, I've spoken with two people that fall in to that last category.
I caught up with Charlie, my college class president, late last night. I say late; technically it was during what I consider VMI business hours, so I can't complain about a late night call! Today, Spencer, a young man I coached in high school, and someone that has grown to be all-too-much of a nice guy, joined me for a lunchtime sandwich.
Interestingly, both guys wanted to talk about what they could do to help Amanda and our daughters. A similar theme arose when I spoke with Steve Ross about a charity football tournament. I've also heard the same sentiment from friends and family.
With such a growing desire to support my family, it seems like it's time I stop bristling at the idea of people helping us.
Irrespective of the idea of providing a way for people to support my family, all of the support -- emails, calls, hugs, visits, letters, text messages, and more -- has done a lot to raise my spirits, and that's putting it lightly.
Thanks to you all
Monday, December 5, 2011
My Adoring Audience
Don't worry; I'm not so pig-headed as to believe the title of this post. Then again, I checked out some stats for this blog and saw some post-worthy numbers.
- I've just passed the 1,000 visitor mark (Well, 1000 different computers!)
- My posts have been accessed over 14,000 time by those visitors
- The average visit to the blog lasts 3 minutes
- Over 60% of the visitors are returning
- You all like emotional posts ( Dear Cora )
Sunday, December 4, 2011
Friday, December 2, 2011
Value
My current morning ritual consists of waking as Amanda exits the shower, putting on ESPN, and gradually awakening to the sight of athletes being, well, athletic. This means that my sleepy eyes see fleeting clips of highlights and news before it's time to rise.
A story I heard this morning made me chuckle. [DISCLAIMER: I understand how an employment contract works, but still...] A University in Texas fired its Head American Football Coach after a dismal run of form. ESPN reported that the decision was an expensive one: the coach would be due a payment in excess of $5 million.
The part that made me want to grab the bed-side table and launch it at the TV was the last line of the report: the Coach said he was owed $8 million and was seeking legal advice.
Must be a tough life; be so crap as to get fired, be given a payoff approaching what an average person might make in a lifetime, and then have the balls to say it's not enough.
All of this is brought in to crystal-clear perspective by our recent appointments with my life insurance representative. I'm a fairly smart guy, and I have a job that pays well...but when your "inadequate" payoff for being fired is several times greater than my life insurance payout, I think you need a reality check. And that's putting it politely.
I should say, we have a wonderful insurance agent with New York Life, and I'd be happy to pass his info on to anyone that's interested.
A story I heard this morning made me chuckle. [DISCLAIMER: I understand how an employment contract works, but still...] A University in Texas fired its Head American Football Coach after a dismal run of form. ESPN reported that the decision was an expensive one: the coach would be due a payment in excess of $5 million.
The part that made me want to grab the bed-side table and launch it at the TV was the last line of the report: the Coach said he was owed $8 million and was seeking legal advice.
Must be a tough life; be so crap as to get fired, be given a payoff approaching what an average person might make in a lifetime, and then have the balls to say it's not enough.
All of this is brought in to crystal-clear perspective by our recent appointments with my life insurance representative. I'm a fairly smart guy, and I have a job that pays well...but when your "inadequate" payoff for being fired is several times greater than my life insurance payout, I think you need a reality check. And that's putting it politely.
I should say, we have a wonderful insurance agent with New York Life, and I'd be happy to pass his info on to anyone that's interested.