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Periodic Updates

Nov 5, 2011

 
Mark visited the Monterey Bay Aquarium with Terri who is a long time event coordinator for Mark and Justin, a young man who started helping Mark during this year. Kenta, Markís cousin from Japan also came. I had an annual Scottish County Dance workshop in Asilomar, a Conference Center in the neighborhood of Monterey. Including myself, we shared the 4 person bedroom with wheelchair access. Their bathroom is totally fit for the w/chair into the shower. Next time, I have to work out how to bring the commode to transport him into the bathroom.

Please review some of the great pictures to see how the day was like. This is the first time ever, the two nights out and there were many things to mind as well as many supplies and clothes to bring. The trip was successful and I am very grateful to the crew who made a safe trip.

During this year, Mark started showing more initiatives. Markís therapies were not so much conducted as much as I expected this year on the contrary to my previous newsletter, the time came for Mark to organize on his own. Then, I have to appreciate such quiet time came into him, too.

During his routine floor exercise on weekends in September, he suddenly managed to raise himself using his right elbow and pivoted his body to be half way up. He must have been trying for a while and wanted to impress someone. That is the typical Markness issue. When I was standing in front of him, he showed off to make his big performance. I was really happy to see him initiating on his own. Those days, many friends and visitors have been expressing his visible awareness and his facial tone being more alert.Something that has taken up our time has been his wheelchair, which has required frequent repairs. His chair needed to be custom.made because Mark is so tall. Some people think heís 6 feet 5 inches, but we havenít really measured him exactly.

Mark is fortunately healthy from a clinical aspect. He takes no medicine. Due to his shortage of free movements, his body is no longer very slim but he still holds about 200lb and he is somewhere 6í5Ē tall. I am pushing his medical supports to improve his hands, now and I am not sure how far I can make. His wheelchair supplier is going to install better support to his body and hopefully this will improve his staying upwards.

Every small thing counts for Mark including daily comfort and work outs. What comes next will totally depend on himself, now. I should hear his voice. He had a quiet holiday within his family but that was the best. He was not worn out for heavy duty schedule or exhausted stomach.

We wish you had the best ever holidays with families and friends.

Mark & Hideko



 

April 2011

 
It has now been over 11 years and this summer will be the 12th anniversary since Markís accident. Time flies. In general, Mark is healthy. Despite his physical limitations, his personality is still quite intact and he is also very strong cognitively. He is patient, he is persistent, and he believes in life. He enjoys fun activities and keeps up his interests in technological news, movies, and music. "Markness" has not gone away.

He continues slowly to improve, in tiny changes that seem as thin as a layer of rice paper, but surely he has been improving. His eyes tell us that he has not been lost. I apologize for not writing to you sooner but have been almost overwhelmed with my many tasks and responsibilities at my workplace and at home. There are too many things to do and there is only so much time available. Please accept my belated apology. This message doesnít contain any big impressive events, so I have decided to write about Markís daily life since 2009.

The last few years have been pretty peaceful. Mark has not had serious problems or new diseases. His days have been mostly good, and he has not needed much medical attention. The only medicine required has been a small jar of cream for a skin problem but it is taking over 3 months to cure this particular problem. In general, once Mark has a health problem, it is nasty and hard to beat. On an ongoing basis, he has needed a lot of attention from therapists, and practitioners of alternative medicine. Heís received such treatments since the time of his accident and I wish you would see how far these alternative medicines and therapies made brought him! Itís truly amazing and wonderful to see.

Something that has taken up our time has been his wheelchair, which has required frequent repairs. His chair needed to be custom.made because Mark is so tall. Some people think heís 6 feet 5 inches, but we havenít really measured him exactly. Mark has been fortunate in the past eleven plus years to have caregivers and a team at his school who have the courage to communicate with him and to deeply understand his limited expressions. Without their daily support, Markís quality of life would have been greatly diminished.

This team of people support Markís general exercise programs. He uses two standing frames which Medi.Cal has provided, one at school and the other at home. This frame provides support for Mark to stand straight up, in front of a small table, and it is important for people who canít move very much. During a typical 30 minute session of standing therapy, Mark can watch TV or perhaps get a snack. He does a more interesting workout on the pneumatic weight machine at his school, Becoming Independent (BI.) Mark also does stretching exercises on a mat or on the floor.

I do my best to prepare his food because eating is another important form of communication and caring between people. We love to take tea or coffee Ė itís a little ritual that connects peoplesí hearts. I want Mark to taste good, healthy food, to eat the same things other people are eating, and to feel included. His supporters very patiently help him to try to feed himself. Mark practices using a fork to eat small pieces of sandwich every day at his school, BI. Itís still difficult for him to do, and when he can eat more than 10 small pieces at a time, we will have a big celebration at BI.


Markís supporters still have to feed him most of his meals because he canít yet feed himself. They also help with washing, bathing, cleaning or housekeeping and Mark relies on all of them.

Markís physical condition has improved very slowly yet surely since the time of his accident. People who donít know Mark have often come up to me and expressed their positive impressions of Mark. I would like to see him improve more, even if it is slowly, year after year.

These days, Mark participates in weekly physical therapy and occupational therapy. He goes to a chiropractic doctor every two weeks. Mark also has an osteopath doctor who has been closely observing his improvements since the accident, and he occasionally sees Ayurvedic doctors who recommend healing foods, and acupuncturists, herbalists and massage therapists. He also has an astrologer who helps to guide the energy dimensions and direction of Markís life.


At the age of 28, Mark is still going strong. He has a positive attitude, and believes in keeping up with all the activities and tasks involved in improving his daily life.




Eddie Rosen/Physical Therapist and
Letha Marchetti/Occupational Therapist



 

Janurary 2009

Mark's 26th birthday party!
 
Here are some pictures from Mark's 26th Birthday.

(Click on pictures to enlarge).











 

December 2009

Mark goes to Bob Dylan Concert in Stockton on August 15.
 
Mark goes to Bob Dylan concert in Stockton on August 15, 2009 Here comes the excitement!


Our house mate, Terri, worked hard to plan a concert outing for Mark. Mark and Terri were going to Stockton, Terri's hometown, for the Bob Dylan concert. Mark loved Dylan ever since he was 3 years old. He has a brother 20 years older who may have influenced him and I must have had Dylan tapes in the car. I recall him saying, "You know what, Mom? Dylan sings about real people," (!?!?!?) when he was even younger than kindergarten.

He listened to many Dylan records when he was in hospitals and afterwards at home for a long time. This was the first time ever he was going to see and listen to the real guy, in real life.

The plan was made carefully leaving home at noon on Saturday and checking into a hotel before the concert. They went out for a big lunch, took some rest, and headed to the show. This is the first time ever in ten years Mark was out without his parents. This was really his own event.

That night, I received a call from Terri and Mark around 11pm when I was driving home from Santa Cruz for my Scottish Country Dance event. They were absolutely excited. Thupten, Mark's other home PA, is from Tibet and joined them for this concert and was impressed to see a true American legend

See some photos of his grand day out.

Here are some pictures from that day.

(Click on pictures to enlarge).













 

Janurary 2009

Mark's 26th birthday party!
 
Here are some pictures from Mark's 26th Birthday.

(Click on pictures to enlarge).











 

December 2008

Therapy, therapies and therapists!!!
 
Dear Friends,

Mark's life has been changing for the last two years.

First of all, I apologize for not updating the website. We've been very busy and now I'm sitting down to write you, and to share some of the exciting changes and the challenges that Mark has been going through.

In 2006, his newly assigned Kaiser physical medicine doctor admitted Mark to Kaiser's rehabilitation hospital in Vallejo, California. For two weeks he was occupied with several evaluations needed to work out a treatment plan. As a result, the doctors recommended a brand new wheelchair which took over six months to receive. During his time in Vallejo, Mark participated in physical therapy, occupational therapy and speech therapy, daily showing good signs of possible improvements.

In this period, Mark was really demonstrating his willingness to change and his possible capacity. Many who saw him on the street, at school and in shopping places kept on expressing that Mark looked quite different, and that his cognitive abilities had increased. I could see that Mark was very tuned in to what was happening and not at all absent minded. He never missed a joke and would often laugh loudly. His acupuncturist, Dr. Dale White, who is very kind, always has a new joke whenever he sees Mark for an appointment, and I know sometimes it is a really bad joke that totally cracks Mark up.

Then, early in 2007, Letha Marchetti was introduced to Mark's life. She is an independent therapist with a lot of experience with many unique cases. She applied her intuitive abilities and creative approach to helping him through the long dark tunnel into a much brighter place. Letha has been helping Mark for nearly two years, now. She leads Mark walking throughout the hallway leading from the kitchen with his assistant on the other end. She helps to exercise his back and arms and knees, and teaches her methods to the support team so that all his assistants now provide regular physical exercise programs for Mark.

In 2008, a speech therapist began working with Mark so that he can be more initiative about communicating with others. They are providing Mark a new communication device. Together with this speech practice, a physical therapist who specializes in working on Mark's hands is helping to improve his hand/arm coordination so that he can use the communication device fully and functionally.

Each time when new therapies started, we had to process the initial interview sessions and explain Mark's living situation and his current environmental issues. We had to engage with his caregivers and school team to help him get to the appointments weekly. Fortunately, Mark's home caregivers and his Becoming Independent Day School (BI) teachers are all fully supportive and eager to encourage Mark to meet new challenges. Without their positive support, these helpful new therapies could not have been put in place and sustained.

Based on those environments, he regularly practices to stand over one hour daily, to eat bite-size pieces of sandwich with a fork, and frequently gets into a weight machine to practice walking at Being Independent, his school. Even if it's not an exercise time, he comes and goes from his room to the kitchen, peddling his wheelchair by himself!

Besides exercise, he has friends to take him out to movies, to play chess and to go out to some gatherings. In January 2008, when his birthday was held at the Ace in the Pub in Graton, California (next to Sebastopol), his friends brought a beautiful belly dancer to celebrate. You may recall the photographs I sent you of that festive occasion.

Mark has had wonderful, innovative caregivers. They have acted as his instructors and mentors in that they communicate and encourage Mark to do one more exercise or activity. He is not sitting alone watching TV at home. Thank you, Sharon, Pempa, Tashi, Tenzin and Terri-who is still coming back from time to time when I am not available. I would like to acknowledge Sonoma County's urgent care substitute service for sending very efficient and capable help when none of us were available. With the support of these people, I am able to go on one full-week out of town trip.

I also want to greatly appreciate Inge McCormick, who has been bringing her homemade TV dinners for Mark. For over nine years she helped me to not panic about running out of food or time to cook for Mark. He has been well nourished with real homemade food all of this time.

Mark will be 26 in January 2009, and we'll again celebrate his birthday and all of the positive achievements of the past year. He is clinically healthy and being as productive as much as he possibly can. Please keep supporting Mark, as he continues his journey of improvement and hope.

Hideko

 
Mark Standing
Image taken, July 27th, 2007

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