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Mark

Having two older brothers, my parents knew something was wrong with me for I had trouble walking. At that time doctors basically thought that the reason my muscles were very weak was because I was so skinny. It wasn’t till I was almost thirty years old that I was correctly diagnose with having a form of Muscular Dystrophy. Fortunately, my disease was progressing at a slow rate and for awhile I was able to live pretty much a regular life like my thirteen other siblings.

After I finally settled down in Cupertino, California, I went to college and got a degree in Accounting. I worked for Hewlett Packard for a few years and then finally worked for Agilent Technologies in their Finance Department.

In July 1996, my disease had eventually progressed to the point where I was in a wheelchair and breathing with the help of a ventilator. Because of my medical needs and requiring 24-hour care, I was moved to my parents’ home. Not only was I adjusting to a new way of going through life, but also I had to adjust to having someone help to take care of me.

There were many things that I missed being able do, like hiking on some of the numerous trails in California. After doing some research online, I was excited to see that some of the San Francisco Bay Area trails had wheelchair access. I soon learned, though, that some of these trails weren’t being well-maintained, causing them to be almost inaccessible. I also noticed that some of the restrooms weren’t accessible for wheelchairs. Seeing there was a need for better information about accessible parks and trails in the Bay Area, I started my “Adventures From A Wheelchair” blog, where I posted reviews on all the parks and trails I had visited. I also made videos so that everyone would know what to expect when visiting any of these places.

In 2015, I started volunteering for Santa Clara County Parks. One of my main tasks was to start visiting each of the County’s parks and doing an accessibility assessment of their facilities and trails. If I found any problems with accessibility, I would write up a report and noting what needed to be fixed, like lowering the soap dispenser so that a wheelchair user could access it. I also started looking for hiking trails that weren’t listed anywhere as wheelchair-accessible but actually were. In doing so, local park organizations could update their park and trail information to include accessible trails.

Helping to make parks and trails inclusive for everyone has become a major part of my life and, with so many parks and trails in the San Francisco Bay Area, I plan on continuing my work as long as I am physically able to. “Access for all” is my new slogan.

 


 

2A

I start my morning at 7 A.M. when my sister Kathy, my primary caregiver, comes in to put on my socks and help me out of bed. I also have another caregiver that comes during the week to take care of me. I need help with dressing and bathing.

 

3A

My Puritan Bennett PR 2 ventilator that I use for resting and sleeping. This mechanical unit was in production after 1961 but hasn’t been in production for decades. I use it because breathing with it is smoother than my portable ventilator. It is hooked up to an air compressor. I saw this type of ventilator in the movie Forest Gump when he was in the hospital.

 

7A

I’m still strong enough to be able to transfer into my wheelchair from my bed. As my disease progresses though I’ll need to find another way of transferring.

This is my ceiling lift and railing, and it goes from this wall into my bathroom. I use it with a standing sling and it helps me transfer out of my wheelchair and onto my bed. My sister then lifts my legs and gets me positioned onto my bed. I also use the lift and sling to transfer into my power chair.

Here, I’m hooked up to my standing sling.

 

8A

A couple years after I started breathing with a ventilator, Pulmonetic Systems came out with the LTV ventilator series. This compact portable ventilator literally changed my life because it gave me the freedom to get back out into the world and enjoy it. I was so thankful for this life saving device that I wrote a long letter to Pulmonetic Systems telling them how much this ventilator has improved the quality of my life.

 

10A

This suction machine helps to clear my lungs. I have a compact one for when I’m out and about.

 

11A

I use a manual wheelchair in the house. It helps to get my upper body in shape.

 

12A

My safety devices. I can use either one to make an emergency phone call in case I fall, which has happened a few times over the last 20 years. Fortunately, I’ve never been serious injured after a fall…knock on wood.

 

14A

My Quantum Rival power chair. I got this chair because it can handle dirt trails, rough terrain like grassy areas, and semi steep hills. Some of the trails I have wheelchair hiked were very challenging for both manual and power chairs. The Rival has helped to keep me safe while taking on some of these more difficult trails so that I could see if any of them are accessible for wheelchairs. My goal to post reviews on my Adventures From a Wheelchair blog of trails that are Easy, Intermediate, and Advance.

 

15A

Breakfast – Cranberry juice, Green tea, scrambled egg, and buckwheat pancakes with a fruit spread. Even though I only weigh 123 pounds dripping wet, my meal portions are small. Because I’m in a wheelchair and not as active as I wish I could be, it would easy to put lots of weight on if I ate as much as the average person.

 

16A

Going up the ramp of our wheelchair accessible van.

 

18A

All strapped in and ready to head out. It takes 25 minutes from the time I transfer out my bed, transfer into my Rival, get dressed, and then get strapped down in the van.

Today my sister and I are heading to Rancho San Antonio Open Space Preserve.

 

21A

My camera wheelchair tripod that I put together. My muscles aren’t strong enough to hold a camera and keep it steady so this setup solves that. Sometimes I use a GoPro Hero to record video while I’m cruising along a trail.

 

22A

Back of my Rival all loaded up. The blue bag on top has my medical emergency supplies, first aid kit, my accessibility assessment gear, bottle of water, and safety whistle. Under that is my compact suction machine. My LTV ventilator with a five hour external battery connected to it, and finally my camera bag.

 

23A

All of the accessible parking spots were taken below so we had to park up here.

 

24A

Several months ago I contacted Midpeninsula Regional Open Space to inform them that their restroom soap dispensers and air blowers were too high for a wheelchair user to access. Two weeks later they were both lowered for accessibility. This is something we can all do so that our parks and trails are inclusive for everyone.

 

25A

Measuring this picnic table to see if it meets ADA requirements for accessibility. My accessibility assessment gear: compact camera, tape measure, clinometer (measures angles of a slope), and note pad. I use these whenever I do an accessibility assessment of a park or a hiking trail.

 

28A

King of the hill.

 

29A

Even though this dirt trail is narrow and has a couple small hills, a wheelchair user could still access it. A few weeks ago I informed the Midpeninsula Regional Open Space that this Deer Meadow Trail was easy for wheelchair users.

 

30A

If there is a bridge to cross, I’ll be going over it.

 

32A

Going off trail gives me the opportunity to find beautiful scenes like this, but I’ll be taking the easy trail back.

 

35A

Back home and time for my Japanese lesson. These lessons help to exercise my brain, which is much needed. I have also been corresponding with my pen pal in Japan for a few years now. We write to each other in both English and Japanese.

 

36A

This year I’ve been working on improving my landscape photography.

 

37A

One of my hobbies is photographing birds.

 

39A

Friday is my movie night, and tonight’s film is The Wave. At 9pm my sister comes in to take off my socks, turn on my heater if needed, hook up my Bennett PR 2 to the big air compressor, then asks if I need anything else before calling it a day.

Thanks for following my Day in a Life. Good night.