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Where Are The People With Disabilities?

5/26/2017

3 Comments

 
Navigating Disability Road
We just returned from a long weekend in North Myrtle Beach SC. Forty blocks of Resort Hotels, hotels, motels and home rentals lining both sides of the street. I can't imagine the number of people in  this 'small' area. During the weekend, I saw on person using a wheelchair and another with a visible limp. That was it. Where are the people with disabilities? One census number notes that there are 17.2 million adults that have  difficulty walking. They  may or may not need a wheelchair, walker, crutch, or cane. We only saw one other person!
This lack of people with clearly apparent mobility impairments enjoying this resort area makes me wonder where the heck are they? Second to that, why would municipalities and businesses put forth effort and finances to make the area accessible if no one is utilizing the area??
Whaddya think?

3 Comments

Closure; Still Wondering

3/30/2017

1 Comment

 
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I continue to ponder the whole deal regarding closure. Clearly, we seek closure as a final stage of the grieving process. However, grieving doesn't really stop, there is no finality to it, there are waves. The waves seem to be huge breaker waves initially and, as time passes, they are smaller.
Our mother passed about six weeks ago. I was  rationally and emotionally prepared for her death. She had been fighting disease for years. The last year of her life, well, she just ran out of energy. Just how much can a body take? As Popeye has said, "I've had all I can stands and I can't stands no more."
Mom didn't want a funeral or  service. She donated her body to a medical school. In her very typical style, she wanted to have it done and move on right away. I was totally in agreement, I was prepared [I thought] and moving on. I got together with my dad and brothers immediately after her death in tribute to her and to have us unified and sharing our grief. OK, move on.
However, there was a push made for a service. I went along with the idea but was against it because it was going against mom's final request. If your last request isn't honored, what does that say? The day of the service arrived, the pastor picked out some comforting scripture verses, family and friends prayed, and we went out for lunch.
To my surprise, there was a new level of comfort  that was experienced by myself and others I discussed it with. We were experiencing 'closure'. I'm not sure if this is the correct term, maybe it is. I have closed the door to the emotional room of the memories, lessons, and love that I keep for her. I can still open that door and visit any time. Perhaps sharing grief with the group  helps to lighten the load and make it more manageable.
I think I have closure but I'm still wondering.............

1 Comment

Don't Expect Everyone Understands Accessibility

2/17/2017

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Navigating Disability RoadYes sir, the toilet does have grab bars.....
Experience truly is a good teacher. One of those experiences has been that not everyone understands what accessibility really is. We have traveled out of town on a number of occasions, expecting to be comfortable in our accessible hotel room and being met with disappointment.
Calling ahead and requesting an accessible room is not enough. Experience has taught me that you must discuss your expectations and needs with a representative at the facility [not the world wide toll free number] and go through your list. For me, besides being able to get in the door, I need to know if they have an ADA or 'comfort height' toilet, grab bars around toilet and in shower, and a roll in shower. If that person doesn't know, find someone who does. Don't make your reservation until you are sure.
I have been researching accessible rooms in a resort town. I'm not sure if these folks know what the ADA is. My ADA has nothing to do with my teeth. Understand your needs and don't take for granted that anyone else does.

0 Comments

Making Your Home Accessible

12/29/2016

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Navigating Disability Road--Accessible home design
Accessible home design and construction have finally come out of the shadows. In part because it is acceptable to have a disability. In part because contractors can capitalize on a very real need in the community. Our senior citizens, trying to remain safely in their homes, are a huge part of the population seeking accessible design and  equipment.

The hazard in the road is that a ramp, grab bars, and door levers seem to be the focus; 'Universal Design'. Certainly, these are frequently necessary, but are not the whole story. Universal design must be used in conjunction with a clear understanding of a person's current physical limitations and probable future limitations. Design and location of stuff like:

  • doorway width
  • doorway thresholds
  • turning area for wheelchair access
  • flooring type
  • height of light switches
  • height of outlets
  • height of tables, chairs, counters
  • kitchen drawers, cabinets, appliances
are all influenced by your current and possible future challenges.

The key to success is truly understanding a person's limitations. Sometimes, that means that you have to look reality in the eye. This is frequently difficult. Honest answers to questions like what can I do? / What can't I do? / What is realistic for me to do? / are challenging. Add to that the unpredictability factor of our changing abilities and you realize that easy home modifications are not so easy.

Speak with Occupational and Physical Therapists, nurses, and especially people with similar challenges. The seemingly small details will make a huge difference. Making your home truly accessible is possible with a good, honest assessment of a person's needs. Money will help, too!
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Sir Isaac Newton and Me

12/12/2016

2 Comments

 
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      No matter which task I perform, I am relatively safe until I try to move from my wheelchair to another seat [toilet / bed] or back to the wheelchair. Each move of the hands, feet, arms, wheelchair, etc is carefully planned and must be executed exactly to the plan. It is a finely orchestrated dance of the mind and very uncooperative body fighting my arch rival, gravity.
      Yep, gravity. Always there, never faltering, constantly pulling on me and sometimes, bringing me down. That is a physical and emotional state. When I do hit the floor, I am unable to get myself back up. Yes, too many people laugh at the commercial of the old woman crying, "Help, I've fallen and can't get up!" I understand her plight. There is NOTHING entertaining about it.
      So, as I perform a transfer from wheelchair to toilet last week, my attention waivers for a moment and somehow, the wheelchair slides to the right as I move left. That creates just enough space for gravity to reach up and pull my butt into that space. The panic rushes up through my body and my brain races for a solution. I gather my thoughts and strength, take a deep breath and once more, heave toward the toilet. The wheelchair moves more right and gravity gives my butt another pull. Greater panic rushes through me and I am now at the awful, terrible, frightening, OHHHH NOOOOO moment. Still suspended but past the point of recovery with the knowledge of what will happen next. I make one last feeble, futile attempt to find ANY seating. The gap opens, my arms tremble and gravity pulls me down.
      The move is slow and I plop on the floor. The second wave of panic hits harder than the first. Someone left his phone on the desk in another room; 20 million light years away as gravity holds my butt in it's relentless grasp. This means that I will laying on a cold and very hard ceramic tile floor until my wife gets home. The math was easy. It's 12:30 now and my wife MIGHT be home by 6:00.
     She did arrive at 5:30. I'll take ANY blessing at that point. No, I won't be forgetting my phone again and I will try to be more careful. Sir Isaac Newton, you can warm up my cold butt!

2 Comments

Did You Say 'FECAL Transplant' ?

11/3/2016

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Navigating Disability Road--Fecal Transplant
          After trying every medication out there used to treat Clostridium Difficile [C-Diff], the option presented was to have a fecal transplant. Yes, you read that correctly, a fecal transplant. Donor poop is actually planted into your colon. As crazy as it initially sounds, it does make sense.
         C-Diff is bacteria in your colon that has taken over and created an imbalance destroying the healthy bacteria. This imbalance is created when you take large doses of antibiotics. C-Diff is highly contagious and is a huge problem in healthcare facilities, nursing homes, and personal care homes. Oddly, the medications they use to treat this are antibiotic based themselves [Vancomycin, Flagyl, and Difficid]. When these don't work [or you can't afford them; Difficid is $4,000 for 20 pills], the only option left is the fecal transplant.
          So, the best way to regain the healthy state of your colon bacteria is to give it a big cleansing flush and plant the seeds of healthy bacteria. How do you get the good stuff? Well, you call a family member [this is preferred] and ask them if they'll donate some poop. That's an interesting call to make, and, I'm sure, receive.
         The donor has to provide two separate samples and have them screened before a third sample is donated and screened again for use the day of the procedure. This one is the tough one. poop on command 6 hours before the procedure and get it to the lab.
         If this donation is approved, the lab makes a kind of slurry with the poop and saline solution. Meanwhile, the patient has done their part by getting ready / prepping for a colonoscopy. Drinking the flushing solution the night before and then getting to the GI Lab. The doctor performs the colonoscopy , and, as they back out of your colon, they spray the walls of your colon with the magic mixture.
         This process accurately brags about having a 97% success rate and the results are immediate. It does seem kinda weird, but, it works!
           Yup, I did say 'FECAL Transplant'!

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Stop the Merry-Go-Round

6/8/2016

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I had an elbow infection in September, went into the hospital for IV antibiotics, got a terrible reaction [C-Diff]. Took another three antibiotics to cure the reaction to the IV antibiotics. Being weak and in bed and wheelchair for several weeks, I had some skin breakdown on my caboose. Due to my weak condition, the wound developed an infection.

I went into the hospital and had to take IV antibiotics; got a terrible reaction [C-Diff]. Took two antibiotics to cure the reaction to the IV antibiotics. This time, no cure, just keeping it managed.

Continuing with physical therapy, every time I started to make gains, got sick again.

With my disability, I get that this stuff happens and try to deal with it as best I  can. I just can't help saying, Stop  the Merry-Go-Round, I want to get off.

Navigating Disability Road
0 Comments

April 18th, 2016

4/18/2016

0 Comments

 
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We recently purchased a piece of equipment called a 'Sit to Stand' lift. Valuable to assist with static standing [standing still] and useful for helping to transfer from one chair / wheelchair / bed / toilet to another without the caregiver straining themselves.

It's a large, clunky looking thing which makes it difficult to match the decor in most rooms and they are expensive. I mention the cost because insurance doesn't cover it. Shopping for one, prices ranged from 1800 - 5000. You MUST research carefully. This applies to any and all medical equipment. Not only for price, but, for quality and appropriateness for the user.

Lastly, I mention that you need to utilize your equipment. Even people with disabilities find clothes hanging on lifts and walkers; much like many people do with treadmills and weight lifting equipment. If you're not using it, perhaps you can find an 'Into New Hands' program. If you're not utilizing the equipment, perhaps someone else can.........

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'I Never Heard You Sound Like That'

4/9/2016

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My brother recently stopped by to visit. As we discussed some of my recent health adventures / challenges, he noted that while on the phone during a particularly difficult time, he said; 'I never heard you sound like that before'.

The sound he is referring to was the sound of defeat in my voice. I had never heard me sound like that, either. My success in adjusting to my disability has always been based on the theory that hard work = gains. Recently, that theory, the success formula, did not apply. Infections and their consequences don't fit my formula. After you try everything with all your effort and none of it works, what's left? I guess I hit the wall [felt like the wall hit me] and I waived the white flag in surrender.

Fortunately, that time has passed and my success formula is valid again. I did surrender but I didn't give up. It's a fine line with lots of gray area between them. You never know for sure until you are there. I hope I can steer clear of that place..........I don't want to sound like that again........

0 Comments

'The Wheel Gets Grease'

4/4/2016

1 Comment

 
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Like it or not, squeaking, can move things along. While my personal style is one that promotes following up on your commitments at all levels, people and many businesses do not.  Just the reality of our times, I theorize...

After having fallen through the cracks and making several phone calls, the cushion for my  wheelchair was finally delivered. Unfortunately, the tech who drove 1.5 hours to deliver it and I, immediately noted that this was the wrong cushion. He was embarrassed and I was angry, frustrated, annoyed, and my butt still hurt.

I immediately wrote a loud, squeaky letter of complaint and made sure that all  company personnel I could get names / addresses for received their very own copies. Apologies were received as was a new cushion the following week..........

1 Comment
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