The Year in Review

As 2007 comes to a close, it is time to reflect on the past year. The last year was full of ups and downs, happiness, sadness, and loss.

The year got off to a rocky start when in January scar tissue in my trachea created an obstruction to my airway, which caused me to stop breathing a few times which led to three visits to the E.R. and two short hospital stays. After the last ordeal, the doctor removed some of the scar tissue from my trachea. The problem was solved. But, nine months later after no problems with my trach, the obstruction returned and I stopped breathing a few times. This led to two visits to the E.R. in two days. The doctor advanced the trach tube past the scar tissue and the problem was resolved again. At the end of October I saw another doctor who ordered a different trach to hopefully prevent future problems. I hope to get it soon. (see blog posts of 3/14, 10/15, 10/17, 10/30/2007)

In March, I regained my voice. Trying to communicate with out a voice was a very frustrating experience for me and those trying to figure what I wanted. The thought of being mute didn't sit well with me. I was determined to talk again. With persistance and the help of my nurse, Ernie I acheived my goal.

In July, I celebrated my 39th birthday with a western-themed party with friends and family. It was an ideal way to spend my birthday. 39 isn't a particularly special birthday, but it was to me. When I was so sick in 2006, I was uncertain if I would see my next birthday. (see blog post of 7/9/2007)

In August, I attended my 20 year high school reunion. I enjoyed seeing and visiting with classmates I hadn't seen in years. I think many of my classmates were surprised to see me there. It was very nostalgic. (see blog post of 8/13/2007) I took in an abandoned kitten that my sister found. Lucky has turned out to be a joy and a comfort to me. Watching him play is also one of my simple pleasures. (see blog post of 9/1/2007)

In October, I went to the Miramar Airshow at the Marine Corps Air Station Miramar in San Diego. It was a fantastic show, especially when the Air force Thunderbirds performed their death-defying maneuvers. (see blog post of 10/12/2007) At the end of the month, wildfires raged throughout San Diego County, causing over 300,000 people to evacuate their homes and destroying around 1500 homes. My home was in the path of the firestorm and I had to evacuate for three days. It was a nerve-wracking time for everybody. The hard work of the firefighters prevented my home and other homes in my immediate area from burning. (see blog posts of 10/21 and 10/25/2007)

I had a nice, low-keyed Thanksgiving with my parents. I was thankful to still have a home. (see blog post of 11/22/2007) A few days later, I rocked out at the Van Halen concert in San Diego. It was awesome. (see blog post of 11/26/2007)

The year ended with a wonderful and joyful Christmas spent with family. (see blog post of 12/26/2007)

In Memorium


A summary of the year would not be complete without mentioning those who are no longer around. I lost two special people in 2007.



Aunt Kathryn (1923-2007)

In March my beloved aunt and godmother passed on after losing her valiant struggle with cancer. She was an integral part of the family and her death has created a void that cannot be filled. Not a day goes by that I don't miss her. She was a woman with inner strength, compassion, and grace. Whenever we went to her and my Uncle Bill's home, she was always happy to see me. She was a very welcoming person. Everyone was welcome at her house, including ex sons and daughters-in-law, and even strangers. She accepted people for who they were.


Lianne Harding (1963-2007)

In May, a friend of mine from the adult Muscular Dystrophy support group, Lianne Harding died suddenly at home. She was always concerned with others and enjoyed life despite her disability. Though she was frail in body, she was strong in spirit. She was an integral part of the support group and is still missed. (see blog post of 5/21/2007)

Christmas

Another Christmas has come and gone. It is always a bit of a let down when it is over. I wish it could last longer. But, if it lasted too long it would not be as special. I try to keep the spirit of Christmas alive all year. The world is in need of more peace, love, and goodwill.

On Christmas my family attended a church service at the Village (Presbyterian) Church in town. I am not a church going person, but I went because my niece, and nephews were taking part in the children's Christmas pageant. Also, my family was chosen to light the advent candles and sing a song. My mother, sister, brother-in-law, niece, and nephews belong to the church. I am a lapsed member; my father and brother never were. Since my father never attends church, my mom jokes that people think she's not married; they probably didn't know my brother existed until tonight. It was enjoyable to see the kids act out the story of the nativity and sing. They forgot their lines a few times, and the donkeys were wrestling and pulling each other's tails. My niece, Dallas had a solo singing and my nephew, Sterling had a speaking part and a singing solo; my other nephew, Stetson was one of the shepards. I was so proud of them. In the minister's sermon, he said that it would not be Christmas without children. How true that is.

After church we returned home for a small family gathering. My Uncle Richard and Aunt Carol stopped by. My cousin Greg and his wife Teresa and their kids Shannon and Rory came. Last was my cousin Toby, his wife Yada and their five week old daughter Mel (Mel means honey in Portuguese; the mother is from Brazil). We sat around the dining table eating a traditional Swedish Christmas dinner which has always been our custom. My mom likes to keep alive the traditions of her homeland. I miss not being able to eat it. There was a lot of talking, reminiscing, joking, and laughing. The kids were bouncing off the walls with the anticipation of the presents to be opened. The wait must have seemed like an eternity. When they finally got around to opening gifts, it was a chaotic whirl of ripping wrapping paper and bouncing kids. It is so nice to see the joy in the faces of the children.

Christmas Day my sister, her husband and their kids came back to open more gifts and spend the rest of the day with us. It was another nice Christmas.

Christmastime

Merry Christmas! I can't believe Christmas is only four days away. Where has the time gone? Christmas seems to arrive quicker the older I get. It comes and goes too fast. I wish it could last a little bit longer.

This is my favorite time of year. I just love the Christmas spirit of peace, goodwill, and giving. It would be great if this spirit lasted all year round. I also like that it is a great excuse to gather together family and to see friends.

Other things I like about Christmas:

• The music. It really gets me in the Christmas spirit. Songs such as Rudolph the Red-nosed Reindeer, Frosty the Snowman, The Christmas Song, I'll Be Home for Christmas, White Christmas, Silent Night, Jingle Bells, Happy Xmas (War is Over), Feliz Navidad, The Most Wonderful Time of the Year, A Holly Jolly Christmas, Jingle Bell Rock, Santa Claus is Coming to Town, Winter Wonderland, and Silver Bells. But, I could go on and on.


• The decorations. There is something joyful about seeing houses, trees, yards and buildings festooned with colored lights and decorations. It brings out my inner child and brings a smile to my face. Seeing the Christmas tree adorned with lights and decorations and colored packages arrayed around it gives me a warm feeling inside.


• The Christmas shows. Rudolph the Red-nosed Reindeer, Frosty the Snowman, Santa Claus is Coming to Town, A Charlie Brown Christmas, A Christmas Story, A Christmas Carol, and the music programs on PBS and other stations. It would not be Christmas without them.


• Seeing the excitement and joy in my niece and nephews at Christmastime. It brings back memories of Christmastime as a wide-eyed and excited child waiting for Christmas Eve and Christmas Day to come. The arrival of Santa Claus bearing gifts on Christmas Eve was the height of excitement for me.

Above are pictures of Lucky enjoying the season. He's had fun climbing the Christmas tree, swatting ornaments around, or running away with them in his mouth. He must think we filled the house with decorations just for him to play with.

Toys for Tots

Today I donated gifts to Toys for Tots; one of my favorite charities. It is such a great cause. But, I was saddened to hear that donations were down this season. The uncertain state of the economy is making people less eager to give. But, at least there are still toys to give away to poor children. Just not as many as they would like. I like the thought that the toys I donate go to children that may not have gifts to open on Christmas. It is always a nice feeling to give, especially to those who are less fortunate. As I have grown older I have realized that it is better to give than receive. That is the spirit of Christmas. If you are looking for a good cause to donate to, Toys for Tots is the one.

Rudolph the Red-nosed Reindeer

Last night I went with my father and nurse, Ernie to visit my sister, niece, and nephews at their home. My brother-in-law was out for the evening, and my mother was at rehearsal for the choral group she belongs to. It gave me more one on one time with my sister. We all gathered around the television to watch the beloved Christmas (Am I still allowed to use that word? I hope the politically correct crowd doesn't get after me) classic Rudolph the Red-nosed Reindeer. It is still my favorite Christmas show. It always brings up fond memories of my childhood when my parents would gather my brother, sister, and I in our pajamas in the den to watch the Christmas shows on television. It makes me smile to think of it. I like that my sister is carrying on the tradition with her children.

The reason I have always liked Rudolph the Red-nosed Reindeer is because I could relate to him. It is about being different and not fitting in; a theme I am well aquainted with as a disabled person. I remember as a child being excluded because I was not like everybody else and being made fun of. The nice part is that in the end Rudolph is accepted by the community despite the fact that he is different. It is a good lesson for life.

Van Halen

Last night I saw Van Halen in concert at Cox Arena on the campus of San Diego State University. When I heard that Van Halen was touring with original front man David Lee Roth, I had to get tickets. The last time I saw Van Halen was in 1986 at the San Diego Sports Arena. At the time Sammy Hagar was the new lead singer. It was a great show and Sammy was a worthy sucessor. But, I always wished I could have seen them in their original encarnation. When this chance arose I couldn't pass it up.

It was my first time attending a concert at Cox Arena and it won't be my last. The parking was very convenient and the disabled seating was very good; my nurse, Ernie had an attendant seat right next to me. All the disabled seating is at the top all the way around the oval arena. But, it is not nosebleed at all. Since the arena is fairly small, the disabled seating provided a great view of the stage. The seats in front of me were set farther down so that if people stood up my view was not obstructed; a large video screen at the back of the stage provided great closeups of the action.

As I sat in my spot waiting for the show to start and watching all the people file in I noted such a variation of ages. It went from teenagers all the way up to the 50 something crowd. The concert started with a reggae band; the name escapes me. That was an odd opening act for a hard rock band. But, they were pretty good. I especially liked their covers of Bob Marley's songs No Woman No Cry and I Shot the Sheriff . I like reggae, it is generally upbeat. They performed for about a half hour. For the next half hour we waited as they prepared the stage for the main act. By this point the anticipation in me was growing stronger by the minute and I could sense it in the crowd as well.

After what seemed an eternity, the lights in the arena went out and as the opening chords of You Really Got Me blasted from the speakers and the stage lights lit up the crowd roared. After that is was one great song after another. They performed songs such as Jamies Crying, (Oh)Pretty Woman, Beautiful Girls, Somebody Get Me a Doctor, And the Cradle Will Rock, Running with the Devil, Hot for Teacher, Panama, Ice Cream Man, Aint Talkin' 'Bout Love, Unchained. They ended with the song, Jump. I hoped they would have done some encores. There was also a great drum solo by Alex Van Halen and Eddie Van Halen had an amazing guitar solo. He is still one of the great guitarists. After all these years they can still rock. It was interesting to see Eddie's 16 year old son, Wolfgang playing bass; he replaces original bassist Michael Anthony. Michael Anthony was a great bassist and when I heard he was no longer with the band and that Eddie's teenage son was the new bassist, I was a little dissappointed. But, my dissappointment soon melted away when I heard him play. That boy can rock. It was great to see father and son performing together. David Lee Roth was still just as good, although he forget the words twice. But, it didn't detract from the show. He is still quite the showman after all these years with his glittering jackets and different colored top hats. He pranced and leaped around the stage and seemed to enjoy the limelight. Although his leaps were not as high as in his younger years, he still did a good job. Overall, it was a great concert and well worth the expense.

Embarcadero Park

Today I went down to Embarcadero Park in San Diego with my nurse, Ernie. It was a cool, breezy day along the waterfront of beautiful San Diego Bay. It was nice to stroll along the waterfront and see all the sailboats out on the bay catching the wind. There is something peaceful about seeing sailboats gliding through the water. There were a lot of other people out and about enjoying the day after Thanksgiving. I decided to avoid shopping areas, on this "black Friday", the busiest shopping day of the year. I guess many other people had the same idea as me. Because of the breezes there were an assortment of colorful kites of all shapes and sizes on display. I have always enjoyed the sight of kites. I wish I could come up with a way to fly kites from my wheelchair. Another interesting site was a man balancing rocks on top of other rocks. It seemed to violate the laws of gravity. A crowd of people were gathered around to marvel at this feat. I want to know how he was able to balance those rocks. Here and there hanging out on the grass and enjoying the day were the ubiquitous homeless people. I wonder what their stories are. How many of them are there by choice, how many are there because of unfortunate circumstances, or mental illness? On this day after Thanksgiving and seeing the homeless people makes me truly thankful to have a roof over my head.

Thanksgiving

It is Thanksgiving. A good time to reflect on what I am thankful for. The following is the list of the things that I am thankful for:

1. My Family because of their support and love, most especially during the times when I have been hospitalized and in life threatening condition. They gave me the will to pull through and to live on.


2. My friends because of their support, acceptance, love, and because they too have given me the will to live on.


3. My life because I am alive due to life-prolonging technology, and because I have a lot to live for: my family, my niece and nephews, and friends. Also because my power wheelchair and accessible van gives me freedom to get around and out of the house.


4. That I am able to live at home and not in a nursing home. This is made possible by my nurses who take such good care of me and allow for my independence.


5. That I have a roof over my head. This is more important to me since the recent wildfires in San Diego County destroyed so many homes, and my home was threatened with possible destruction by the fire.


6. The firefighters because they saved so many homes including my own during the San Diego wildfires.


7. My cat, Lucky because of the comfort and joy he provides me.

Thanksgiving is one of my favorite holidays because of the gathering of family, which has always been important to me. The turkey, mashed potatoes, gravy, cranberry sauce, and pumpkin pie used to also be my favorite part of the holiday. But, now that I no longer eat, that part of the holiday is now a pleasant memory. Thanksgiving dinner would not be the same through a feeding tube. It was hard to find out that I was no longer able to swallow to eat, especially when I would no longer be able to eat my favorite foods, or any food, but I gradually became resigned to the reality. It is still difficult at times to be around people eating, but I can focus on other things and put it out of my mind. I let people eat around me because I don't want people acting differently on account of me. Dysphagia, or problem swallowing is not the end of the world, it is a new adjustment to make in my life; something I've been doing my whole life with Duchenne Muscular Dystrophy.

Muscular Dystrophy Adult Support Group

Today I attended the monthly MDA Adult Support Group. I have been attending since 1990; I guess that qualifies me as a regular. It was just me and my nurse, Ernie; the facilitator, David; The head of patient services at MDA San Diego, Danielle; my friends Ceci and Jason. The three of us are regulars at the group. Ceci has an undetermined condition. She has two dogs, Spike and Samson. Spike is a Yorkshire Terrier, who used to be her assistance dog. He is kind of a mascot to the group. He is always trying to get cookies from the attendees. His cute, little face usually gets him cookies. Samson is a friendly black lab who is the new assistance dog. Jason is an aspiring filmmaker with Freidrick's Ataxia, who doesn't let anything get in his way of enjoying his life and pursuing his dreams (see blog post of September 15, 2007).

Today we went around the circle, as usual to see what was new with everybody since the last meeting. David also asked us each to talk about a Thanksgiving memory. Mine was the time my family rented a houseboat on Lake Mead for Thanksgiving. We were going to fish for our food. Big mistake! After a day of fishing, all we had to show for our efforts were a small sunfish and a catfish. Our pitiful Thanksgiving dinner for the five of us was a few Tater-Totts and some fish. The dinner was not so great, but the important part was that we were all together as a family. To this day we still laugh about it.

Bronchoscopy

Today I went to the UCSD Medical Center for my bronchoscopy, and I thought, the removal of scar tissue. I was a little nervous since I had never seen this doctor before. But, this was unfounded. Dr. Harrel is one of the top pulmonologists in San Diego. I was told that I was just having a bronchoscopy so that the doctor could decide whether to remove the scar tissue from my trachea. A young doctor did the procedure, but Dr. Harrel surpervised. After putting the scope down my trach, and having a look around, the scope was removed. The procedure was done. Dr. Harrel decided not to remove the scar tissue and ordered a different trach for me. My trach tube had been advanced past the scar tissue last time I visited the E.R. (see blog post of 10/17/2007) In its present position, there was no sign of scar tissue below the trach tube; the tissue was smooth and a healthy pink. There was no danger of scar tissue blocking my trach tube. The new trach will have a non-adjustable tube. It will stay in the same position. My present trach has an adjustable flange which allows the doctor to move the trach tube to any position. But, since I have scar tissue higher up, the trach tube doesn't need to be moved. It will stay where it is. I feel relieved that I will not need surgery. It looks like I don't have to worry much about trach obstructions. I feel very positive. The new trach sounds like it will be good. Of coarse, when the new trach is put in I will know for sure. But, I feel it will be just fine. I hope it comes in soon.

Fire!

10/22

I went to sleep Sunday night feeling safe in my home. The wildfires burning in San Diego County were too far away, especially the Witch Creek Fire near Ramona, about 30 miles away. How wrong could I be! As I slept, the Santa Ana winds continued to blow west fueling the fire (see previous blog post 10/21) and causing it to advance over the bone dry hills, valleys, and canyons towards the coast and destroying hundreds of homes in its wake. The phone rang at 5:30. It was my cousin Greg; His family had to evacuate their home in Poway down the mountain from Ramona. About two hours later, the phone rang: it was my sister. Her family had to evacuate their home in Escondido (about 20 miles to the northeast of us). They were headed to our house. Less than a half hour later, the phone rang again. It was a reverse 911 message telling us to evacuate. I couldn't believe it. My mom woke my nurse, Ernie, who was sleeping in the guest room between shifts. He quickly got me up in my wheelchair, gathered some supplies, and we were out of the house.

Outside there was a fog of smoke and ash, obscuring the sun and creating an eerie, orange glow. The winds were gusting and ashes were raining down all over the place. I hurried into my van. The windshield was covered with soot. We drove out. My mom followed behind in her car; my dad decided to stay behind. The driveway was littered with twigs,branches and leaves blown down by the strong winds. As we drove out of town the ash continued to fall and eddys of ash and soot swirled around.The roads were covered with a layer of soot and ash. We drove straight to Scripps Memorial Hospital in Encinitas. I was supposed to go to the evacuation center at the Del Mar Fairgrounds, but I was afraid they wouldn't have the proper accommodations for me.

Once at the hospital I rushed inside. The smoke made its way into the E.R. waiting room. I took refuge in the radiology department waiting room. While there I picked up x-rays and CT scans for my medical procedure Thursday. I had planned to go there today anyway. They were nice enough to let me hang out there all day. I spent most of the time following the news of the fire on the radio. Another fire in Fallbrook (in the northernmost part of San Diego County) forced Ernie's family to evacuate their home. He stayed with me. Fires were blazing all over the county. It was unbelievable. It was getting worse by the minute. My dad finally left the house and went to a family friends house in Leucadia, near the coast. My mom was already there with her cat, Sassy, and my cat, Lucky. Also, my sister was there with my niece and nephews, one of their dogs and the turtle. Her husband stayed behind with their other dog, two rabbits, and the bullfrogs.

That evening I was informed that I had to leave the hospital because it wasn't an evacuation center. They suggested I find a motel or hotel. There was not a room to be found; because of the fires burning all over the county, about 250,000 people were evacuating. My sister contacted her neighbor, who is on the Board of Directors of Scripps hospital. He called the hospital and told them I was staying the night. It helps to pull some strings. They gave me a bed in the corner of the E.R. overflow unit. They bent over backwards to make sure that Ernie and I were comfortable.

10/23

After a restless sleep worrying about whether I had a house to return to, I woke up at 5:00 and turned on the news. A reporter was reporting from my town of Rancho Santa Fe. Houses were burning up the street from my house. I had a sinking feeling in my gut. Later, a social worker told me I had to find other accommodations. They only allowed me one night. She was very helpful. She found me a place to stay after calling around and even called some of my medical supply companies to have supplies sent to the hotel. She tried to see if some board and care places would take me in, but they wouldn't take me because I had a feeding tube. I have no idea why not. She found a hotel called California Suites in San Diego, away from the fires. I drove down there, settled in and watched the news. Houses had burned on streets near my house. I wasn't sure if my house had survived the early morning firestorm.

The father of one of my classmates from my town, Dr. Buncher and his brother Martin contacted my mother and asked if I got everything I needed from the house. My mom told them I left my bedside ventilator, bedside suction machine, and clothes. They got through the roadblocks by dressing as firefighters (Martin used to be a volunteer firefighter and had uniforms). They made it to our house and called my mom to tell her they were standing in our living room. Our house had survived the early morning firestorm intact. I felt great relief, yet some trepidation; we weren't completely out of the woods yet. The Santa Ana winds were still blowing, and there were still hot spots that could flare up and start new fires. My dad got my equipment and delivered it to the hotel.

My sister told me that our house was threatened by the firestorm. Flying embers ignited trees near our house. The firefighters got on our roof and made a stand against the fire. Thanks to their actions they saved our house and others in the immediate area.


10/24

Today I was still not allowed to return home. There were still many hot spots that could flare up. My parents got through the roadblocks and went to the house to get more of my things. The house still stood. It was undamaged. What a relief that was! We dodged a bullet.

To pass the time Ernie and I decided to drive up the coast to Oceanside. Before driving the coast we drove inland towards my house to see if they would let us through; Ernie left some medicine at my house. As we neared my town we met the roadblock. There was a National Guard Humvee with armed soldiers standing nearby. They were there to keep people, especially looters, out of the area. They wouldn't let us pass. We turned around and tried to get in through another street. We were met by another National Guard roadblock. The soldier politely turned us away. We gave up our quest and decided to continue on to the coast. It was nice driving along the coast. The air was a little bit better but the sun was still obscured by smoke. In Oceanside we stopped at the hotel where Ernie's family evacuated to. We visited with them for a while. Then we went to Costco, where Ernie bought food for his family, and I picked up some more things I needed. After dropping off the food we drove back down to the hotel. On the way back we tried to get into my town again by another route. At the National Guard roadblock we were turned back yet again. This proved to me they were doing a good job protecting our community. Looters would have loved to get into my community. Also, they were keeping us safe. There was still danger from hot spots. Back at the hotel I watched the news coverage of the fires, trying to find out when my town would reopen. I slept well that night with the knowledge that I would have a home to go back to.

10/25

This morning as I wondered if I would go home, I was also a little nervous about my medical procedure today to remove scar tissue from my trachea. The phone rang: it was the UCSD Medical Center. My procedure was cancelled because the doctor had a family emergency. Now my thoughts were focused solely on going home. I waited in the hotel room to get the green light to return home. I watched the news anxious to find out when I could return home. After what seemed an eternity, my mom called to give me the good news: we could go home! Ernie packed up my stuff and when my dad arrived they loaded my stuff into his car and my van. With little delay we were headed home. It was a great feeling to drive up the driveway and see the house standing there. It was even better to be in the familiar surroundings of my home. Though I was elated to be home, I felt sad for those in my town and around the County who didn't have homes to return to. Over 1500 homes were lost in San Diego County to the fires. The nerve wracking ordeal was finally over. Every time the Santa Ana winds blow from the east there will be anxious feelings and fears of another conflagration. I hope we don't go through this ordeal again anytime soon.

Additional Comments

My nurse, Ernie stayed with me the whole time I was evacuated and remained calm and collected. Even though his wife and kids had also evacuated their home, he chose to stay and take care of me. His loyalty and consideration is commendable. I am lucky to have a nurse like him.

On a somber note. My thoughts go out to our friends Michelle and Mack and their children, Michael and Mellissa who lost everything as a firestorm destroyed their house. I hope all the best for them as they and their children rebuild their lives from the ashes.

I am also very thankful to the firefighters for working day and night in oftentimes grueling conditions in their fight to stop this beast of a fire and to try to save homes. We should always be grateful for the service these firefighters give to us. Hats off to all of them. To me and countless other people they are heroes.

Here Come Those Santa Ana Winds Again

The hot, dry desert winds are blowing in Southern California again. The temperatures are in the high 80's, 90's, and 100 in some areas. Though it is nice to have summer weather in October, the strong, dry Santa Ana winds, or "devil winds" as they are called can bring devastation. They bring the dreaded California wild fire. The brush is so dry, especially with our drought, that the smallest spark, such as downed powerlines, or a spark from a truck backfiring can trigger a fire, which is fanned by the 30 to 40 mph winds. In some areas the wind gusts are over 100 mph.

All day the smell of smoke has been heavy in the air, while a pall of smoke has been hanging over us; the sun glowing orange through the smoke and ash and creating an eerie orange glow over the landscape. As I write this blog, two wildfires are burning out of control in San Diego County; one in the south, another to the east. The fire in the east, called the "Witch Creek Fire" is burning near the towns of Ramona and Santa Ysabel about 30 miles, as the crow flies, from where I live. With all the smoke and ash being blown from the east to the west, it seems like the fire is just around the corner. Lucky for me it is not. I hope for the best for all those people forced to evacuate their homes, and hope they have homes to go back to.

E.R. Revisited

I had to visit the emergency room at Scripps Hospital in Encinitas again today. My trach was obstructed again. Early this morning while being trach suctioned, I couldn't breathe and my nurse, Ernie had to grab the ambu bag and got me breathing again. I decided to go to the E.R. later this morning after trying to get some sleep. At the E.R. I found out that Dr. Eisman, the pulmonologist who always treats me, was not there; they thought he had left the country for vacation. I have a lot of confidence in Dr. Eisman, and to have another pulmonologist treat me made me a little apprehensive. No one knows my situation as well as he does. He has been treating me for 13 years. I would be treated by Dr. Clark, his associate.

Again I had the usual chest x-ray. But, this time they had to do the dreaded blood work. I am very difficult to draw blood from. I usually end up like a human pin cushion from all the poking. Luckily, I was only poked twice. The RT(respiratory therapist), Janet, who has worked with me many times over the last 13 years, came in the exam room to set up the bronchoscope. Unlike the two stooges who had trouble setting up the bronchoscope during my E.R. visit Saturday night, Janet is very much on top of things. I have a lot of confidence in her. Dr. Clark soon came in. To my relief, he had contacted Dr. Eisman, who gave him advice on how to handle my situation. He put the bronchoscope down my trach and saw the flap of scar tissue in the trachea that keeps blocking my trach tube. He advanced the trach farther past the obstruction. After he was done I was allowed to go home. But, I will need to undergo a procedure soon to have the scar tissue removed.

E.R.

Saturday morning started off badly. I was having frequent trach suctioning and the suction catheter would not go down all the way. Also, there was a persistent wheezing coming from the trach. It felt like there was an obstruction. My mom squirted saline water numerous times down my trach to loosen things up. But, it had no effect. I felt something was wrong. After a restless morning, my lungs were somewhat clear. I thought the worst was over. When my nurse, Ernie showed up for work at 2:00pm things seemed much better. I had less suctioning, but the catheter kept meeting resistance, but Ernie was able to force it through. I thought it might be a dried mucus plug at the end of the trach tube. But, at around 6:00 as I was talking to my sister on the phone, I felt an urgent need for suctioning and had to end the phone call. Ernie went down the trach with the suction catheter, but the way was blocked. As he went down again, I couldn't breathe. Frantically, I mouthed to him that I couldn't breathe. He quickly grabbed my ambu bag, and in a few seconds he had it attached to my trach and pumped air to my lungs and I could breathe again. My heart was pounding so hard it felt like it would come out of my chest. It is always a scary experience, especially when you have the fear that the ambu bag may not get you breathing again. Thank God for the ambu bag! After that episode, I knew it was no dried mucus plug; I suspected scar tissue. I have been down this road before. In January I stopped breathing a few times, until the pulmonologist at Scripps Memorial Hospital in Encinitas, Dr. Eisman, finally removed the scar tissue. For the next seven months, my trach was unobstructed. I felt that the problem was gone for good. I was surprised when it came back again. I had to go to the dreaded E.R. Ernie drove me in my van to Scripps Hospital in Encinitas. On the way, I listened to U2, to take my mind off things.

When we arrived at the hospital, the E.R. waiting room was almost empty; a good sign that they were not very busy. After a somewhat short wait, they called my name and I was allowed in the E.R. First I had to meet with the triage nurse. She was told what the problem was, and then took blood pressure, and temperature. I was promptly ushered into a procedure room to wait, and wait for the doctor. While waiting, the nurse hooked me to the heart monitor, automatic blood pressure monitor, and pulse oximeter to measure my oxygen levels. My heart rate was 120. The nurse told me to relax and not to talk. When she was gone I continued to talk. It wasn't the talking making my heart rate go up, it was because I was stressed out from what happened to me earlier! They also took a chest x-ray. After a while the E.R. doctor came in the room to evaluate me. At the time I was breathing well, and by the doctors tone it sounded like he would send me home. During the evaluation I needed suctioning. Again the catheter met resistance and I couldn't breathe. My nurse, Ernie grabbed the ambu bag and got me breathing again. This convinced them there was a problem. The E.R. doctor contacted the pulmonologist, Dr. Eisman. I was relieved that he was on duty. He knows what to do. That put my mind at ease.

Soon two R.T.s(respiratory therapists) entered the room with the broncoscopy machine. The two stooges couldn't figure out how to connect the equipment. My nurse, Ernie helped them connect it. He was an RT in the Navy so he knew how to do it. It's unbelievable they didn't know how to do it. The doctor came in and put the bronchscope down my trach. He found a flap of scar tissue at the end of the trach tube that was causing the obstruction. He advanced the trach tube past the scar tissue and the airway was completly clear. I was soon allowed to return home.

Miramar Air Show

Today I went to the annual airshow at MCAS(Marine Corps Air Station) Miramar in San Diego. I have always had a love for aircraft ever since grade school, so I was excited to go. It was an awesome experience. The first demonstration I saw was a Marine Air-Ground Task Force Assault Demo. It was a demonstration of close air support, armor,artillery and infantry. It was complete with helicopters, jets, tanks,marines and a lot of fiery explosions. The explosions were so intense I could feel the heat. Next was the F/A-18 Hornet showing it's capabilities. After that was a step back to the past. They had a legacy flight with some WWII era fighter planes, and flying alongside was an F/A-18 Hornet fighter jet. I thought the juxtaposition of old and new was quite an interesting sight to see. Following that was a civilian acrobatic flyer in a bright red bi-plane, the "Oracle Challenger" piloted by Sean Tucker, a veteran of the airshow circuit. His loops and death defying spins were amazing to watch. After that was the Patriots Jet Team. As they soared overhead they trailed streamers of red, white, and blue smoke. I missed the next act, Shockley's "ShockWave" Jet Truck, because I was looking at the various aircraft assembled on the tarmac. I'm just not that interested in trucks. After that was a civilian acrobatic flying team, the Red Baron Squadron 4-Ship Stearman Aircraft. They did some amazing synchronized maneuvers. Next, they had a demonstration of one of my favorite jets, the AV-8B Harrier Jet. I find it interesting because it is a VTOL(vertical take off and landing). The sight of a jet hovering in the air is amazing. The final act was the United States Air Force Thunderbirds, the stars of the show. Usually they have the Navy Blue Angels, but this year is the 60th anniversary of the founding of the U.S. Airforce, so they had the Thunderbirds.

The Thunderbirds are just as awesome. There was much anticipation as the Thunderbirds prepared to take to the sky. I could feel the excitement in the air as the jets roared down the runway and soared majestically into the sky. The roar of jets makes the hairs rise on the back of my neck with excitement. I felt like a kid. I am always amazed at how the pilots can be so precise in their maneuvers. The six red, white, and blue Thunderbirds perform formation flying and solo routines, most of which are pretty hair-raising. In one routine, two jets fly full speed towards each other and then bank away from each other as they seem about to collide. In another, a jet flew upside down. In the mirror formation one jet flies upside down directly above the other jet creating a mirror image. The "bomb burst" maneuver is a sight to see. The jets fly straight up in the air then veer off in different directions. They end the show with all six jets flying in the delta formation. A beautiful sight to see.

I left the airshow feeling elated and looking forward to next year's show.

Bookshare.org

Reading has been a lifelong passion of mine; my books have always been among my most prized possessions. So, when last year I lost the ability to turn the pages of books I felt a great sense of loss. I couldn't imagine not being able to read books anymore. I looked into electric page turners, but they turned out to very expensive and not so user friendly. But, then I thought of electronic books. I always preferred reading real books, so I wasn't too interested in electronic books. But, I realized I had to shed this bias and embrace the future if I was to enjoy reading again. I decided that e-books were the answer. While doing an internet search for e-books, I came across Bookshare.org. They make print books available on-line to individuals with visual impairments or people who are unable to hold or turn pages of a book due to a physical disability. This was the site for me. I signed up right away. To qualify, all I had to do was fax them a proof of disability signed by my doctor, stating that because of my disability I was unable to turn pages to read books. Once I was approved for membership, I payed a one time fee of $25 and a yearly fee of $50. I am allowed to download 100 books a month out of a growing collection of books which are scanned by members and volunteers and sometimes the owner of the copyright. It is legal because of an exemption in U.S. copyright law that allows the reproduction of publications into formats for the disabled. The books are available in two formats, DAISY and BRF. DAISY is a text format that can also read the text if needed; BRF is a Braille format. I downloaded a free reader called Victor Reader to read the books. It does a pretty good job, but I wish it was a little easier to use. But, it is better than nothing. I recommend Bookshare.org. It has allowed me to enjoy reading again.

More Pictures of Lucky

Here are some more pictures of Lucky. The bottom picture is Lucky with my mom's cat, Sassy. They are two partners in crime.

San Diego Zoo

Yesterday I went to the San Diego Zoo with my nurse, Ernie. It is another one of my favorite places to visit in San Diego. This is a great time of year to visit since the tourist season has ebbed. It is hard to maneuver a wheelchair through the throngs of people. We started by going through the Monkey Trails exhibit. The exhibit shows the flora and fauna of the tropical forests of Africa and Asia. The highlight is the monkeys, of coarse. They are among my favorite animals. I enjoy watching them climb, swing, and frolic. We also wandered through the numerous aviaries to see the variety of colorful, exotic birds. Hearing the cacaphony of bird songs, and sounds is so peaceful and soothing. Another exhibit I always enjoy visiting is the orangutan enclosure. They are so amusing to see. Their antics always draw a crowd. It's as if they want an audience. I never get tired of watching them. They make me laugh. But they are also so smart. One was using a twig to get food out of a replica ant hill. That's how the do it in the wild. It is sad to know that their habitat is being destroyed at an alarming rate. We may not see a future with orangutans living in the wild if this keeps up. We also saw the bonobos, sometimes called "pygmy chimpanzees." They are also fun to watch. One saw me and came right up to the plexiglas with a young one riding on it's back (See picture above) to check out this strange creature on the other side. I felt like I was the one on display. Lastly, I was able to see the Giant Pandas without the crowds. Usually I don't see them because the lines to view them are too long. They are beautiful animals which remind me of big, cuddly teddy bears. Of coarse their teeth and claws would seriously injure you. I look forward to seeing the new panda cub when he is old enough to be put on public display.

The zoo is another great place to get around in a wheelchair. They also have shuttle buses to transport disabled people around the zoo.

San Diego Wild Animal Park

Yesterday I went to the San Diego Wild Animal Park with my nurse, Ernie. It is one of my favorite places to go. I like just to drive around in my chair enjoying the scenery and looking at the animals. I have a yearly membership so I can go as much as I want. It is always enjoyable for me to see animals, especially when they have room to move around. They recently added a new attraction called Journey into Africa to replace the old railway. Like the railway, the new trams drive around the vast enclosures so that the animals can be seen roaming about like in Africa. But, what makes the tram so much better is that it is fully wheelchair accessible. They have a ramp that I drove up into the car, and tie-downs for the wheelchair. It was a very smooth ride and enjoyable. I wasn't able to go on the old railway and always wished they would make it accessible. It is great that they made it possible for wheelchair users to enjoy the ride like everybody else. Another great thing they introduced is a shuttle bus to transport disabled people to and from the far reaches of the park. Overall, the park is very accessible for wheelchairs. They get high marks in my book. I look forward to my next visit.

Jason Hinkle

I have a friend, Jason Hinkle, who is an aspiring documentary filmmaker. He has Friedrich's Ataxia, but this has not stopped him from pursuing his dreams or from enjoying life. He doesn't let his disability get him down. If disabled people are looking for a role model, Jason is it. He has made two short movies which can be viewed on his MySpace page at www.myspace.com/jrhink .

Lucky

Last Saturday, an unexpected bit of happiness entered my life. It was in the form of a cute kitten. I had wanted a pet and this kitten just arrived at the right time.

But, this is no ordinary story. It was serendipity. My sister and her kids drove to Oceanside to meet up with my father so they could drive together to go up to Newport Beach. My sister had to find a place to leave her car. The first place she tried to park she was told that she couldn't park there. After driving around, she finally found a spot on a street alongside the freeway. As my sister was transferring the kids and some things to my father's car she heard frantic meowing nearby. She dropped what she was doing and immediately looked around to find where the sound was coming from. She found the distressed kitten entangled in the vines on the wall dividing the freeway and the street. It appeared that someone had abandoned him. My sister untangled him and he purred as if thanking her for rescuing him. He turned out to be the sweetest little thing. My sister canvassed the local neighborhood, going door to door trying to possibly find the owners. She had no success. But, in one of the last houses she went to lived a kindly old women who had a couple of cats. She agreed to take in the kitten until the owners could be found. If not it would end up in an animal shelter.

The lady put up signs around the area, but there was no response. My sister decided to take the kitten so he wouldn't end up in an animal shelter. She couldn't really keep it, but she knew I wanted a pet. She sent her husband to pick up the kitten. It just so happens that I was visiting my sister when my brother-in-law arrived at the house with the kitten. I fell in love with the kitten right away. This was the pet I was hoping for. I agreed to take him home with me. It was an unexpected stroke of luck.

I decided to name the kitten Lucky because he was lucky to have been saved by my sister, and because it was lucky that he ended up as my pet. It is so enjoyable to watch him play. He sure is full of energy! It is also comforting to have the little guy sleeping on my bed. He is a friendly, good-natured kitten. He purrs when you look at him. He is content to be in a nice place with someone who truly wants him.

Torrey Pines High School Class of 1987 20 Year Reunion

Last Saturday night I attended my 20 year high school reunion. My nurse, Ernie accompanied me. It is hard to believe that 20 years have elapsed since the graduation ceremony on the quad at Torrey Pines High School (Del Mar, California). I remember driving along the procession in my power wheelchair and my mortar board hat kept falling off. My classmate, Evan Himfar, who was following behind me in the procession kept retrieving my hat and putting it back on my head. I never could get hats to stay on my head. But, the highlight of the ceremony was when I drove on stage to accept my diploma, I received a standing ovation from my class. To this day, I cherish that moment.

In some ways it feels that graduation was only yesterday, yet other times it feels like ages ago. Time flies and I am left with fond and not so fond memories. High school was full of a mix of both. Yet if we didn't have bad memories, the fond memories would not be so sweet. I am glad to have been a part of the class of '87. For the most part, it was, and still is a fine group of people.

It was interesting see how everybody has changed in the last 20 years. Some people have changed more than others. Some people were hard to recognize, yet others were unmistakable after all these years. No one had trouble recognizing me. It is hard not to miss me since I was the only student in my class in a wheelchair.

The Reunion was held at the Marriot Hotel Del Mar. Over 2oo people showed up, a far better turnout than the 10 year reunion. People were more at ease at this reunion. After10 years people are still out to prove themselves. After 20 years this pressure is less evident. I felt a positive vibe in that ballroom. People were mingling all over the room. Very few seemed to ever sit down. It was great to hear the joyful sounds of laughter and of delight of reunion with classmates not seen for many years. There was so much chatter that it was hard to hear. Even the music was drowned out. That just proves that there was a good time. Everybody was so busy talking that few people danced. Hearing the music of the times brought back many memories.


I really enjoyed visiting with people I haven't seen in years, and people I didn't know. I felt that they were glad to see me. Many people were probably surprised that I am still alive and kicking. There were times when I wondered if I would see this day. It was even better that I have my voice back so I was able to talk.

8 Random Facts About Me

Today I was tagged by Scott Sands, an aquaintance of mine and fellow blogger (Scott Sands Alive) with Duchenne Muscular Dystropy, to play a game called Eight Random Facts. Here are the rules.



A. You must post these rules prior to giving your facts.


B. You then must post eight random facts about yourself on your blog.


C. At the end of the post, you must tag eight more bloggers.


D. Then you must visit each blog and leave a comment that they’ve been tagged.

Unfortunatly, Scott already tagged the bloggers I know. So I will just list my random facts. But, if anyone reading this would like to share 8 random facts about themselves, just email them to me (johnrsf@pacbell.net )

Here are my eight random facts about me:

In 1982 on a school trip to Washington, D.C., I happened to meet President Reagan during a tour of the White House.

I am a big fan of the band Los Lobos and saw them in concert several years ago.

In 1988 b.v.(before the vent) during a trip to Venezuela I went to the rainforest in Canaima. I don't think they ever had someone in a wheelchair there.

In 1984, I attended the opening ceremonies of the summer Olympics in Los Angeles.

I am a baseball fan. My team is the San Diego Padres.

I am not a big fan of rap music.

Jeopardy! is my favorite television show. I qualified to be a contestant, but they couldn't figure out how I would buzz in to answer the questions.

I am a history buff.

My Birthday

Today I reached another milestone in my life--I turned 39. For most people this is not a particularly big deal, but for those who have Duchenne Muscular Dystrophy it is a significant event. Every birthday I look upon as a personal victory against my disease. Last year, with my health problems and two month hospital stay, there were times I thought I would never see this day. But, the love and support of my family and friends and self-determination kept me going and enabled me to cross my bridge over troubled waters.


I had a big birthday bash on Saturday, July 7. I have had a party almost every year for the last 9 years. There is nothing I like more than spending time with family and friends. So, I use my birthday as an excuse to get everybody together. To me that is the ideal way to celebrate my birthday. Gifts are no longer important to me; to me the gift is being with friends and family.

The party was held on the nice, big lawn at the house of my sister, Bibbi and her husband, Rick. It was decorated in a western motif. There were hay bales, wagon wheels, and cow skulls scattered around the yard. There were cowboy hats for those who didn't bring one. The caterers had quite a spread of western style foods. I couldn't eat any of it, but I am glad the guests enjoyed it. I had my non western tube feeding. They don't have barbeque tube feeding. It was great to see the adults mingling and the children romping around. Everybody seemed to be having a genuine good time. The phrase eat, drink, and be merry truly applied.

The highlight of the day was the performance of the magician who performed some amazing tricks.He started his act swallowing fire (ouch!) One trick involved making a bird dissappear, then he took out a lemon, peeled it and inside was an egg. When he cracked the egg open, the bird flew out. In another trick he had a milk carton and poured out all kinds of drinks such as milk, chocolate milk, root beer, apple juice. The children really loved that trick. When he was done he ripped apart the carton to show that it was a regular milk carton with no hidden compartments. The most amazing was the finale when he levitated his daughter with a single broomstick to hold her up. I could not figure out how he did it. I always enjoy a good magic show, especially when I can't figure out how the tricks were done.

After the magic show, my 8 year old niece, Dallas Rose got up on stage and sang a song. It was very touching; I don't think there was a dry eye there, including my own. Dallas also had the idea to have a lemonade stand with the procedes going to the Muscular Dystrophy Association. She wants to give the money to MDA during the Labor Day telethon in San Diego. What a thoughtful little girl! After that my sister had activities for the kids such as sack races and egg toss. It was great seeing the children enjoying themselves.

I returned home from my party feeling elated and blessed to have such a wonderful family and group of friends. I couldn't have asked for a better way to celebrate my birthday. Next year will be an even bigger milestone when I reach 40. I plan on being there.

July 4

Today I attended the annual July 4 parade in my hometown of Rancho Santa Fe. It is a nice community event and has a quaint, small town feel.

The parade always starts with a local singing the Star-spangled Banner; this year it was sung by a student from the school. It wasn't a perfect rendition, but that's what makes it quaint. At least she didn't resort to the horrid vocal gymnastics so many singers use to mangle our national anthem. It always brings a lump to my throat whenever I hear it. Next, the fire engines, with sirens blaring and lights flashing, led off the procession. They were followed by a Marine Corps color guard from Camp Pendleton who marched by with the stars and stripes held proudly aloft. After that was the parade of vintage cars, floats pulled by tractors, decorated golf carts, people on horses, and children riding bicyles decked out with red, white, and blue streamers,balloons and flags.

After the parade there was a picnic and concert by a local orchestra on the village green. It was a nice, low-keyed way to spend the afternoon.

I couldn't help but reflect upon the over 3500 men and women of our armed forces who have died,and the thousands of others who have been maimed or injured in Iraq, in an exercise in futility. I am tired of hearing the mantra that they are fighting and dying for our freedoms. This is just more empty rhetoric to justify a tragic waste of lives and treasure. It is a sad state of affairs for this nation. How many more lives will be lost before this national nightmare is over?

Hands Free Mouse

I recently purchased a hands free alternative to the mouse. Due to my Muscular Dystrophy, I was starting to lose strength in my hands. It got to the point that it was getting more difficult to move the mouse and click the buttons. I constantly needed help to put my hand on my mouse, since it kept slipping off. I was losing the strength to keep my hand on my mouse. Using the computer started to become a frustrating and tiring experience for me. I started to feel discouraged.

But all this would change when I discovered the Naturalpoint SmartNav 3:AT hands free mouse. It uses an infra-red camera mounted on top of my monitor to track my head movement. A reflective dot stuck to the bridge of my glasses reflects the light back to the camera which tells the computer to move the pointer. To click, it uses a feature called dwell clicking in which I hover over the item I want to click for a few seconds and it clicks. To type I use an on-screen keyboard. This device has made the computer easier and more enjoyable to use.

Lianne Harding 1963-2007

Today I attended a memorial for a good friend. Lianne Harding was a regular at the Muscular Dystrophy adult support group that I attend quite regularly. Her form of MD,took quite a toll on her body. She had hearing loss, a pacemaker to assist her weakened heart, couldn't walk without difficulty , and had a whisper of a voice.Yet, she was able to keep on going and enjoying her life. She may have been frail in body, yet she was strong in spirit. Her concern for others was wonderful as well as her kind heart. She was concerned with how I was doing, especially when I was so seriously ill last year. Her kind e-mails always made my day and brought smiles to my face. Iwas inspired by her. It was privelege to have known her and she will be missed.

Her husband of 17 years, Bill truly loved her and strove to bring happiness and enjoyment to her life. He stood steadfastly by his wife's side. He always looked out for her. When he was on active duty in the Navy, he always made sure Lianne would be well-looked after when he was out on deployment. He should be commended for the dedication to his wife. Many men might find it hard to deal with a wife's progressive disability, but not Bill. He never gave up on Lianne.

I am Back

On May 8 of last year, I was hospitalized with double-pneumonia and fluid around my lungs. I had drainage tubes inserted in both sides of my torso to drain the fluid around my lungs. But, that was not all. A fistula, or hole, was discovered in my trachea. This allowed fluid to leak into my lungs from my esophagus, which caused the pneumonia and the infection that caused the fluid around my lungs. My pulmonologist, Dr. Eiseman, was unsure if the fistula could be repaired. I thought I was going to die. Luckily, Scripp's Memorial Hospital in Encinitas (in California north of San Diego) has a very skilled ear, nose, and throat surgeon on staff. Dr. Ling knew how to go about fixing the fistula.

The surgery involved removing some muscle tissue from my neck and using it to seal the fistula. It was a success. I was put in to a drug-induced coma for three weeks so as not to undo the surgery. On July 3 I returned home. Since then my recovery has been slow and frustrating. I have had a few setbacks with my trach. Scar tissue blocked my trach quite a few times; twice I stopped breathing and blacked out. Luckily, my mom knows how to use the ambu bag! The paramedics were called both times and I was rushed to the hospital. I have been hospitalized twice and been to the ER numerous times since returning home. I've become a regular at Scripps Memorial Hospital in Encinitas. They should name a wing after me. I lost the ability to swallow; I am fed formula through the peg in my stomach. Also, I am not able to talk most of the time. But, I am hopeful to regain my voice. I am determined not to lose my ability to speak. Although I have gone through many trials and tribulations over the last 10 months, I feel that my life is slowly improving. I am glad to have cheated death once again.