Search the Navigating Disability Road website:
  Navigating Disability Road
  • Home
  • About the Author
  • Adjusting
  • Caregivers
  • Contact Me
  • Defining Disability
  • Discussion Blog
  • Guest Author
    • In Awe Of My Home and my Community
    • Educate Others About Your Disability
    • Vicki's Holiday
    • Where My Love
    • You Have No Idea
    • Blurred Lines
    • Now I Understand
    • What Is The Meaning Of Being Disabled?
  • Featured Article
  • Financial
  • Links
  • Recreation
  • Spiritual

Closure; Still Wondering

3/30/2017

1 Comment

 
Picture
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

Making Your Home Accessible

12/29/2016

0 Comments

 
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!
0 Comments

Sir Isaac Newton and Me

12/12/2016

2 Comments

 
Picture
      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

Stop the Merry-Go-Round

6/8/2016

0 Comments

 
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

Looking Ahead.......

1/5/2016

0 Comments

 
Well, 2015 is over and I'm glad. The kinda year that if something could go wrong, it did. Fighting infections, getting sick from the infection treatments, moving to a new environment, losing abilities, skin breakdown, and equipment problems are just a few of the highlights.

Of course, being Mr. Crankypants is not the state of mind I need to be able to present a more positive outlook. I was even hesitant about my first paragraph, but, reality; it is what it is.

Happy New Year and many blessings to all of you. Let's just give it our best shot today.
Picture
0 Comments

Seeing the Bottom

2/2/2015

0 Comments

 
Picture
As we continue to stay on track to buy the new house and deal with all the paper work and coordinating inspectors, appraisals, etc; it is still difficult emotionally to come to accept that all the planning, hassle and expense are due to my predicted loss of function and loss of independence. I am now able to  see the bottom on long slide down. It has taken 23 years to get here which has been a blessing. However, while I feel good that our plan is taking shape and we're doing what needs to be done, being scared, frustrated and anxious all come with it. Of course, today I'm doin' ok. That is most important issue, take care of today doing the best you can on your long slide down...

0 Comments

Parking Issue, Still

9/7/2014

0 Comments

 
Just  had to do a quick post. Not neglecting my duties, just have higher priorities this month.

Note that the car is possibly a person with a disability parked in the proper spot. Just not  paying attention. This illustrates how much room a van with a ramp REALLY needs...
Picture
Picture
0 Comments

Pool's Open

6/13/2014

2 Comments

 
Deb and I realized several years ago that making our home the hub of recreational opportunities is the most practical and enjoyable way for us to get our 'kicks'. Three years ago, we had an above ground pool installed. We usually gasp for air when we discuss costs, but, we don't incur the annual vacation road trip expenses, so, it really does equal out quickly.

As it is with EVERY endeavor, my situation ALWAYS creates special challenges and issues. However, we do a great job discussing these issues, our feelings and our concerns before we take the plunge [yes, that was on purpose]. For example, the special challenges for me with the pool:

Problem

  1. Getting to the pool
  2. Getting in / out of the pool
  3. Water temperature
  4. Lack of body control
  5. Intense sun & heat poolside

Solution

  1. Deck with ramp
  2. Hand crank lift
  3. Solar & propane heat
  4. Floatation inner-tube
  5. Large umbrella for deck shade
Admittedly, Deb enjoys the convenience and ability to jump in the water at any time. She makes cleaning the water part of her swim routine and does an excellent job with maintenance. The water always is clear and inviting. Stop by for a dip anytime!
2 Comments

Nice Bag

6/4/2014

0 Comments

 
Nice Bag
As we continue to decline, we have to make adjustments. I get that. For the past year, I have been using an external catheter that is attached to a bag strapped to my leg to store urine. Quite honestly, it's a great system. Saves hassles, panic and falls.

However, now that summer is upon us, 'tis the season for short pants. As hard as I try, I just can't get comfortable with people being able to see my bag of pee strapped to my leg. And, this really only happens here at home. If I head out to the store or wherever, I do wear long pants. So, you would think that anyone stopping by the house knows me, knows my physical problems and seeing my bag 'o' pee wouldn't matter to them. Maybe it doesn't matter to them. Must be my problem.

Hey Steve, get over it; nice bag...

0 Comments

New Wheels

5/22/2014

0 Comments

 
Chad & Steve
       My wheelchair is 7 years old. It is currently in need of tires, brakes, hand rims and a replacement cushion. It is taking strain in other places as well.
      So, instead of ordering the parts through my service provider and waiting for a technician then hoping  it all falls together, I am ordering a new wheelchair and will keep the old one on stand-by as a 'just in case'.
      Wheelchair purchases can be made easily on line and the prices are excellent. I caution you not to do this for two reasons. If you have insurance coverage, most of these places don't submit the paper work for you. This means that it is cash up front and deal with  the insurer yourself.
       Second and MOST important, you absolutely want a professional to perform an assessment of your needs and physical abilities / limitations to make sure you are getting the correct wheelchair for you. Additionally, the pros assure that your posture is correct and you are not doing yourself continued harm or problems. You get to discuss options and what will suit your needs  best.
     I contacted a local company and let them know I was in the market for a replacement chair. I had to get my doctor to fax medical records and then make an appointment for my assessment at the 'wheelchair clinic'. I was informed that Chad and Tammy would perform the assessment.
      Appointment day arrived and a friend transported me to the Hiram G. Andrews Center. This is an Office of Vocational Rehabilitation facility that provides education and training for people with disabilities. One of the few in the country. Anyway, I was truly pleased to be greeted by Chad who just happened to be a patient in the rehab hospital where I worked 20 years ago. He was working as a Rehab Specialist for the Medical Equipment Provider and would be part of the assessment team. The other half of the team, Tammy, is a licensed Occupational Therapist. She would be assessing my function, taking a medical history and assuring that Chad and I didn't miss anything.
       Tammy did her thing, Chad did his. We discussed my use of the wheelchair, methods of transfer, propulsion and activities of daily living [ADL's for those who are not initiated]. We talked over wheels, tires, arm rests, seat cushion, back support, footrests,  I felt very comfortable that the new chair will meet my needs, keep me safe and as independent as possible. The lesson here: don't try this at home kids, get a professional (s).
       Additionally, it was very gratifying to see that a patient from the rehab was a productive, successful person in the community. Way to go, Chad! I am still envious of him; he could always and still can ride a wheelie forever in his wheelchair.

0 Comments
<<Previous
    Engage Brain for Discussion Blog...

    Blog Maintenance:

    See About the Author

    Archives

    May 2017
    March 2017
    February 2017
    December 2016
    November 2016
    June 2016
    April 2016
    January 2016
    February 2015
    January 2015
    December 2014
    September 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013

    Categories

    All
    Accessibility
    Adjusting
    Advocacy
    Attitude
    Caregivers
    Chronic Pain
    Civil Rights
    Defining
    Developmental Disability
    Empathy
    Financial
    Medical
    Positive Thinking
    Recreation
    Spiritual

    RSS Feed

Picture
Home
Adjusting
About Me
Caregivers
Contact Me
Guest Author
Defining
Discussion Blog
Featured Article

Financial
Links
Recreation 
Spirituality
E-Mail Steven
Copyright © 2012 Navigating Disability Road