Milestone

A big thanks to my buddy Scott Sands for his eloquent tribute to me on my 50th birthday.

See: http://www.scottsandsalive.com/?p=185

A Big Blowout

tommys bday cake

Tom's B-day Cake

As unbelievable as it seems to myself and others, I turned 50 years old on January 17, 2010.  The momentous event required a big celebration of course.  And it was GREAT, girls popping out of giant cakes, dancing girls clad in nothing but balloons!  I am telling you this party was incredible!  Then I woke up…

Actually, my party was much more family oriented and nonetheless fantastic.  Afterwards I counted over 100 attending!  My family accounted for about 40 of those present.  The rest were people from different parts of my life.  Some of the old muscular dystrophy families, friends from high school, friends from MDA summercamp, people I had worked with at the phone company, college friends and friends from church.  Some of these people I have known most of my life and they fit into several categories that I listed.  It was a bit overwhelming at times and I wish I could have talked to each person a lot more.

The MDA San Antonio district staff all showed up and presented me with a plaque for my fundraising efforts.  Several people got up to say a few words.  Then they sang “happy birthday” and we had cake.  That was on top of the BBQ served earlier.

My niece put together all of the decorations which included a timeline with pictures from each decade and year of my life.  I tried to supply the pictures from what I had but I think I missed a few years.  Thanks again to my very talented niece Traci!  I also want to thank everyone that helped out in any way because they took the burden off of my parents.  We could not have made this happen without your assistance.  Thank you!

In closing, I want to thank everyone who has been part of my life so far for their friendship and everything they have done for me to make my life better and happier.  Thank you!

Christmas As Usual

It seems like Christmas came and went in a flash this year. Every year seems like it is speeding by faster than the last. But the few moments with friends and family make it worth riding along on this speeding train.

Tom & Maria Christmas 2009

"Together" Christmas 2009

We had a record attendance at our annual Christmas Eve party. I think maybe this year was the 40th party here at the house. My parents inherited the Christmas Eve event from my grandparents sometime around 1971 when they no longer could host such an event.

The gift exchange game that we play had more than 40 participants and seemed to take forever. But it is always fun to watch as the most prized gift is “stolen” by the next player. Somehow, the game came to be known as “Chinese Christmas” or other people may call it “white elephant”.

Before we play the game, we always have a short Christmas pageant including the kids.  My sister started the pageant about 25 years ago with the grandkids and now it includes the great grandkids.

We all have many nice memories of Christmas.  However, it is always a lot of work getting everything ready, mostly for my mom.  Luckily, everyone pitches in Christmas Eve to take the load off the matriarch.

An Old Landmark

I had been hoping to visit an old San Antonio landmark this fall when the weather became cooler. So, when a sunny and fairly warm beautiful day came up, we headed for the Japanese Tea Garden.

I have lived here all my life and I have never visited the “Sunken Garden” as it is generally referred to locally. It is located in an old limestone quarry and is adjacent to the San Antonio zoo and Brackenridge Park and are all old depression era projects just north of downtown San Antonio. Another interesting fact is that after the attack on Pearl Harbor and up to about 15 years ago the name had been changed to the “Chinese Tea Garden”.

The slideshow has about 140 pictures from inside the gardens and from above on the quarry rim and along the trail and road that takes you up on top. There are some photos of the Sunken Garden Theatre which is adjacent to the garden. I have been to concerts and music festivals at the theater back in the 70s and 80s.

The city has just recently allocated money to improve the garden but it is supported mostly by private funding. Repairs have been completed on the ponds and now a restoration has been started on the old residence of the Japanese family that maintained the garden for years. The garden was made accessible in the early 90s. I’m glad I finally went to see it.

Shark!

In early October we took our almost annual vacation to Port Aransas Texas which is on the Gulf Coast just north of Corpus Christi. As usual, we took a long weekend leaving on Thursday and returning on Sunday.

As before, my friend for over 30 years/former college roommate and his wife were with us at our favorite condos, “Casa on the Beach”. Activities will mostly looking for a seafood restaurant to eat at and driving around the area to see what we could see. In the condo I had a great view of the beach from the fourth floor and the large windows. I usually don’t go on the beach in my wheelchair but we do drive in my van along the beach.

Once again we had a great time eating and playing an extended game of dominoes. It’s a great break from the day-to-day routine even though it takes a large effort to get me away from my house with all my required equipment. A big thanks to my mom and dad and Stephen and Donna for making the trip possible.

No Go

If you remember my post in February “An Anniversary”, our attempts to obtain a tourist visa for my dear Maria so that she could be at my 50th birthday party were unsuccessful. She spent two weeks in Manila applying two times at the US Embassy for the visa.

After the disappointments, we had to wait a few days to get a less expensive fare home. On the day of her flight back to her home island the first of four typhoons hit the northern Philippines. The streets were flooding in the torrential rain when she was leaving for the airport in a tricycle taxi. The driver soon told her that they could not get to the airport. It turns out that the airport had been closed to flights already.

Luckily, the house where she was staying with her sister, who works there, was on higher ground. The next day the weather had cleared and she went to the airport to get a rescheduled flight. She was home late that afternoon safe and sound after a long wait at the airport.

Safe but disappointed with no visa… and no idea when or if we will ever see each other in person. Only other possibility is a K-1 fiancée visa but I have local opposition to the idea that will need to be worked out. One day.

We did it again this year!

Success BarometerDespite the hard economic times, we were still able to raise a record amount with my annual MDA Telethon drive. A huge thanks to everyone that dug into your pockets and contributed this year! I could not have done it without each and every one of you.

The money collected will be used locally for MDA summer camp and the MDA clinics. A portion will also go to research to continue working toward a cure.

Every year I am amazed at everyone’s generosity. I would think you would get tired of my e-mail appeals every year, now twice a year with the Stride and Ride walk, but I’ve been able to increase my collection each year for 20 years.

This year’s total (so far) is $15,320! in 2008, we raised $15,055. I did not quite reach my $16,000 goal but we have a record nonetheless. Thanks again to everyone that helped make this possible!

Here We Are Again…

barometerTime keeps flying by! Maybe it’s because I am approaching 50 and each year becomes a smaller percentage of your whole life. When I was 10 one year was 10% of my life so far. But now, at nearly 50, one year is only 2% of my life. I think that is why it seems like time is moving faster.

Well, it is August again and it’s time for my annual MDA Telethon fund drive. It seems like I was just doing this only a few weeks ago! This year my goal is to raise $16,000. Last year I surpassed my goal of $15,000 which continues my 20 year streak of raising more than the previous year. I owe it all to all the great people that have contributed, both friend and stranger. (And a little hard work…)

I will be celebrating my 50th birthday in January. So, give me an early present by helping me make my record goal..

Thank you everyone for your generosity!

No Beer Sold Here…

In early June my caregiver and I took an excursion to the recently opened and much anticipated San Antonio Riverwalk extension. The city had just completed improvements to the San Antonio river upstream from downtown where the original Riverwalk is located.

The northmost part of the extension is by the old Pearl Beer Brewery but we had to go two blocks further to find a wheelchair accessible point. Pearl beer and Lone Star beer were both San Antonio breweries originally but due to financial problems only the names remain. In fact, I heard that the original yeast was destroyed for both when the breweries closed. Kind of sad but I never drank either one.

We found a ramp entrance across the street from the river flood tunnel entrance where there is a little park with a parking lot. The entrance took me on to a long gradually sloping ramp down to the Riverwalk level 2 blocks down. From there we went as far time and my heat tolerance would allow. We took over 50 pictures.

I had been involved with complaints to the city over accessibility to the world-famous Riverwalk. It is good to see that they are making this new section as accessible as possible. Once the weather cools off, I will go back and check out the next section.

1, 2, 3… Yank!!!

My PEG (feeding) tube has been looking kind of nasty and rotten lately because I had been putting off having it changed for a while. So, before it stopped working completely, I called my gastroenterologist’s office to make arrangements for the tube change.

This was my third tube change since I had it inserted in 2003. The tube we were replacing had lasted the longest of any so far, three years by my records. I was kind of proud of how long we had made it last. However, I was about to find out that making it last too long caused other problems.

I use a Bard replacement .PEG tube with the rubber bumper on the inside instead of an inflatable type because they last longer and seemed to leak less. The on the problem with the bumper type is that very few technicians know how to insert them.

First of all, the old tube must be basically yanked out like the first time you replace a tube that was inserted with a scope down your throat. The idea is that when you pull on the tube the bumper flexes and comes out through the hole. However, my tube had been in there for nearly 3 years and the bumper had become hard. So, he yanked and it would not come out, so he yanked again and the bumper broke off! The tube was out, that was good. But, the bumper was still inside my stomach that could be bad.

Anyway, my favorite technician went ahead and installed the new replacement tube without a problem. Meanwhile, they called the gastro doctor to see what should be done about the old bumper inside. The doctor called back about 20 or 30 minutes later and said it will pass without a problem.

Next, it was off to radiology to take a picture to see if the new tube was placed correctly. The radiology department is across the street in the main hospital. So, they have to roll the bed with me and my ventilator through the underground tunnel to radiology. I think it must be a quarter mile or more.

After about six different views on the digital fluoroscope, everything looked fine. I hope that was not six x-ray doses… digital imaging takes less radiation, I believe. Well anyway, I did not glow-in-the-dark that night.

After this experience, I think I will keep track of the age of the tube and not let it get beyond two years max. I will continue to try to find a technician that can insert the bumper type stomach tube because the balloon type doesn’t seem to last even six months.

Now I don’t want you to take this as discouragement if you are considering having a feeding tube inserted. Having to have tube feedings has kept me healthy and made me feel 100% better than when I was struggling to get barely enough nutrition by mouth. It’s just one of those things that I have to live with and life is good!