The DMV and Me

The DMV and Me

You’ll recognize the plot at once. It’s a story as old as mankind and a path virtually all of us must tread.  I’m talking about getting older; losing it; knowing what needs to be done but not being able to do it like we used to.  Of course it doesn’t happen just once but again and again.  Piously saying “I’m only doing it for your sake” the nurse, the boss, the wife, the friend each, in turn takes away a key, hides a bottle, revokes a privilege, or issues an ultimatum.  For some of us, such as those with Parkinsons, the path is long and the take-aways are many.  For those who die of sudden massive heart attack or rapidly spreading cancer, there may not be time enough to understand and appreciate the losses.

For me and the plot of this little tale, the events began with discussions of when older people should stop driving.  Discussions at church, work, support groups. Everyone has a personal anecdote or opinion.  I noticed some people who would find it more convenient to drive their own car rather than ride with me.  When directly asked these people wouldn’t say they found anything wrong with my driving.  Some of the people in the support groups I participate in proudly announced one week that they had voluntarily given up driving only to admit sheepishly the next week that there were just times when he or she HAD to use the car.  I began to wonder earnestly how I would handle the crisis.

I expected my crisis to happen in July since my drivers license needed to be renewed then, I thought I had dodged the bullet when I successfully applied on-line for the renewal and received it without question.  According to the paper I was good to go until 2018.  Two months later and over a week after my birthday, came a letter.  Out of the blue the DMV informed me that they wanted to carry out a reexamination of my ability to drive a motor vehicle.  It was, they informed me, for “my safety.”  From then on, everything the DMV did was “for my safety”..

The first requirement was to get my doctor to complete a 10 page medical summary. This was more extensive than I ever recall completing.  Fortunately I am a Kaiser healthplan participant and their Customer Services department knew exactly what to do.  Shortly after the DMV received the medical record I received notice of my in-person reexamination appointment.  Because the letter didn’t say exactly what was going to be reexamined, I called. A technical assistant assure me that the letter specified which test or interview I was being asked to attend.  When I assured her my letter did not, she agree to pull up her records.  “Well,” she equivocated, “when they don’t say which one, I guess that means you’ll get all of them.  That included a written test and a modified driving test.  I would also be interviewed for 30 minutes by a hearing officer to determine my state of mind and general cognitive abilities.  To this point it was all pretty low-key with the idea that I may have to have a “restrictive license” or take a remedial course. After all they’re only thinking of me.

It appears that some people do well enough at this point that their license is stamped “OK” and they go on their merry way.  But I was just beginning.  I got to take the dreaded “driving test”.  The pressure ratcheted up. 

On the test date, I felt slightly keyed-up but not uncomfortable.  The examiner was pleasant.  The day was beautiful.  I was shown the test and told that I could miss 20 of one group of maneuvers or only ONE of a small group of critical errors.  The pre-check of my car and pulling out of the DMV parking lot went well.  As the test progressed, I grew more and more relaxed.

Pulling into the debriefing parking lot, I sighed in relief thinking I had easily passed the test.  Boy, was I wrong.  The examiner lit into me like I had run over 5 kittens and a baby girl.  According to her, in less than 3 minutes I had committed over half the “critical errors” possible and 5 more than necessary to fail the test. When I calmed down enough to hear what she was saying it boiled down to my not looking over my shoulder before lane changes and turns.  I was missing the blind spot.  I certainly felt I had been blind sided.  I made an attempt to explain my practice and the controversy regarding blind spots.  That did not help my case as the examiner now felt I wasn’t even TRYING to pass the test.  The next day, as expected I got a letter saying my driving privileges were suspended immediately.

Feeling like I had been sucker punched, I found it difficult to focus on my life, deal with my Parkinsons, meet my obligations to others.  Fortunately, I have the most wonderful wife in the world who had already made plans for dealing with this crisis.  She had introduced me to a man 6 or 7 years my junior who helped me copy and fold the church newsletter.  Where I needed someone to do the heavy lifting Dave was there.  Now Carolyn suggested that David could be my driver while we “sorted out this mess”.  I knew that “this mess” could go on for weeks, months, or even years.

David has medical problems of his own but also has a great attitude and a willingness to make things  work out.  Although he would be getting paid as a driver, it meant some significant sacrifice on his part. Instead of sleeping  until 8 or 9 each morning he had to get up at 6, eat breakfast, make his lunch, and ride a mile and a half on his bike to be ready to drive me to my scheduled activity.  That activity might be a 14 mile bike ride or collecting and counting the cash from the local library lobby used book sales or a half dozen other things I’ve gotten involved in.  Overnight David was essentially asked to volunteer for everything I had volunteered for.  But he came through.  So much so that in many cases no one knew there had been a change in my mobility. I stayed involved in all my responsibilities and activities.

With that pressure off, I could concentrate on getting my license back.  The friendly folks at the DMV were more than willing to schedule another driving test for me (although it was a month in the future) and they seemed absolutely delighted that I was interested in a Special Instruction Permit which allowed me to drive again as long as a driving trainer, licensed Occupational Therapist, or licensed driver over the age of 25 was in the car with me.  When I received my permit in the mail David found that his driving duties were reduced at least by half.  He had “graduated” from driver to instructor.  I checked out what training programs were available for older drivers particularly inexpensive or free resources on the Internet. I was especially interested in those areas where I had made so many serious errors – lane changes and blind spots.

The next three weeks actually went by quickly. It turned out that David was a silver lining in my stormy cloud.  Having David along with me also provided a welcome change of pace. But I paid the price in loss of privacy.  Sometimes I felt like I was in the middle of a logic puzzle with three canoes, three chickens, three cannibals and three missionaries trying to cross a river without anyone getting eaten.  For example, I usually take two older women to church on Sunday morning.  But I couldn’t pick  up the women until someone over 25 was in the car but David didn’t want to ride his bicycle on Sunday mornings so he had to have someone else pick him up and bring him to our house.  Then we had to juggle walkers and scooters and wheelchairs.

Two days before my second driving test my neurologist called to schedule a routine appointment  During this appointment the doctor (and Parkinsons expert) made several references to my not being able to drive as my condition develops.  He couldn’t have lowered y expectations more effectively if he had been hired to do that.  

The first time I took the driving test this summer I was confident and became more so until the examiner punctured my balloon.  This time I was nervous and became more so as the test progressed. On the other hand, this examiner was much more personable during the test than my first examiner. About 3 minutes into the test he said, “Mr. Loveridge, we’re humans, not owls.  We’re not expecting you to turn your head 180 degrees to see your “blind spot”.  Look just barely past your shoulder like this (he demonstrated).  But it’s good to see you’ve done your homework.”

When the examiner told me I had passed I was so shocked that I couldn’t think to ask what was next. .  I had only 5 out of a maximum of 20 driving errors and NO critical errors.  I didn’t dare ask if I had heard right. I had.  Still, I didn’t want to publish this until the actual stay of execution (set aside of action) arrived in the mail.  It came with a built-in disappointment – I am automatically scheduled for a review one year from now.

A little bit means a lot

Lately, because I can't use my walker I've been using the power wheelchair to get around the house much as I have used it to get around outside.  This has taught me to be a much safer driver and has also taught me the value of just a small distance.

Probably the largest problem negotiating my way around the house has been getting through doorways.  My chair is 25.5 inches wide whereas our doorways are 29, 31, and 32 inches wide.  That should mean I have from 2.5 to 6.5 inches clearance room.  This picture shows the doorway with the door swung open.  The 28 inches has lost .5 inches on one side because of molding and 2 inches on the other side because the door is still blocking the way.  So now my  clearances are 0 to 4 inches.

All I need to do,  you say, is widen all the doorways.  That's true and I'm in the process of doing that unintentionally with my chair.

Invention to the rescue!  Turns out that one of the major door hinge makers also make an offset hinge that recovers all of the space taken by the door.  As part of their Christmas gift to us Jessica and Jon installed three sets of hinges this week.  They're marvelous!

Look below at how the offset hinge moves the fulcrum back and to the side, effectively moving the door from the doorway. There are, of course, situations where these won't work but for the majority of cases, they're marvelous.

	Old Hinge	New Hinge
Space taken up by door
Inside view
Outside view

Pride goeth before the fallI

I've been feeling pretty good lately although the bursitis in my left elbow has again flared up.  In fact it hurt enough that I went to the doctor to get a shot of cortisone like I did almost exactly one year ago.  But the shot hasn't seemed to do anything this time.  I've needed to be more protective of the left arm because of the elbow pain.

Well, yesterday  evening we were scheduled to host a choir party.  Carolyn had spent many hours straightening, cleaning, and decluttering the house.  Edward, Tiffany, and their boys had come over to help and had left after lunch.  We were down to the little things.  I was in the living room putting away non-Christmas music and straightening the Christmas music around the piano.  Of course I wasn't using my walker since there's so little room to operate behind the piano bench.  And of course my feet would at that moment decide not to cooperate with a step I wanted to take.  Thrown off balance, I reached out with my left arm to steady myself.  The left arm gave notice through a tremendous jolt of pain that it wasn't about to be used that way.  Encouraged by the pain, my elbow buckled.  And down I went. I felt my knees go about the same time and thinking that was smart of them.  Now I wouldn't have so far to tip over.  My side hit the soft padding of the piano bench pushing it out of the way and apparently causing enough noise that Carolyn could hear me from the kitchen.

Carolyn was showing our youngest son Steven and his  wife Lisa how we made a hot, spiced drink from apple juice, cranberry  juice, and orange juice.  I heard her say, "Uh-oh, Dad just fell."  I didn't yet know what shape I was in but I still relaxed a little, knowing that help was on the way.  While the three of them came into the living room, I assessed the damage.  Nothing hurt enough as to signal a broken bone.  I hadn't lost consciousness.  The piano and music cabinet appeared unhurt.  Carolyn suggested that she and Steven help me up but after a brief attempt, I suggested we wait a couple of minutes while I got a damage assessment from my body parts.  I quickly determined that lifting me by my arms was not going to work.  But an underarm lift first to a sitting position, then to my knees, and finally to my feet worked quite well.   I have no idea what we would have done if Carolyn and I had been alone.

Carolyn slid my walker to me but even before I took a first step I knew that I couldn't  use a walker just then.  The pain in my arm from any pressure was just too great.  I asked Steven to retrieve my power chair while Carolyn moved away the walker.  This was only about the second time we've had the power chair in the house and it felt weird.  I discovered that I could negotiate every door I needed to as long as I kept my left arm securely inside the chair arms.

We continued with our plans for a choir party (about 22 people) at  our house that evening.  I wasn't much help but at least I could participate.  I don't think I'll be using my walker for the next few days.

Making progress

I decided from some of the comments I was getting that NOT seeing my leg wound was making it sound worse than seeing it.  Besides, it seems to me that it is so much better this week that I'm quite optimistic about the outcome.  Here are the photos.  I tried to edit them so they were as close as possible to the same orientation and size.

Nov 9

The size of each picture is approximately 6" square, about 6" below the knee.  Although far from healed, the wound has lost virtually all the hypergranulation and is actually starting to grow healthy replacement tissue on the outer edges.

Nov 14

This morning I was seen by a wound specialist who changed the compression dressing and with silver nitrate cauterized a couple of the edges that looked like they would have trouble healing.  She was reluctant to say how long the healing process would take but it would be several weeks.

She explained my diagnosis (stasis dermatitis associated with venous insufficiency) requires that I wear compression stockings - probably the rest of my life or I can expect further breakouts like this to occur. This one was complicated by bacterial infection.  Fortunately, I have good arterial supply to my legs.

Thank you all for you concern, prayers, and well wishes.

You don't want to see it

My leg, that is.  When they removed the dressing this afternoon to check the status of the wound, I took a couple of pictures but I've decided they might be a little too graphic.  If you imagine what a leg would look like if a pit bull bit into it and pulled off a piece of leg 2 inches in diameter and 1/4 inch thick, you'd be pretty close.  It's not that regular looking but it's just as ugly.

I've been referred to Kaiser's "wound care specialist" who's supposed to call me within the next 7 days.  I think that is both positive and negative - positive in that if they thought it was flesh eating bacteria I'd be in the hospital right now and negative because they're needing to escalate the care already.

As you're  probably aware, nurses don't tell you anything without clearing it with the doctor and mine wasn't available today.  But I had three of the office nurses look at my leg with great concern written on their faces.  And one of them muttered the word "hypergranulation".  Granulation is a good thing.  It promotes skin growth over large wounds.  Hypergranulation (sometimes called proud flesh), on the other hand, retards skin growth.  So you have to "wound the wound" until the hypergranulation is eliminated and the normal healing process can begin.  I'm guessing that's what the wound specialist does.

In the meantime, it's back with the tightly wound dressing on my leg and showering with my leg in a garbage bag to keep it dry.

From bad to worse - my left leg

I have been nursing two problems with my left leg for several months: swelling from the knee to the toe; and an open sore about 3/4 in in diameter.  Neither problem seemed that serious when I discussed each with my doctor.  The support hose and lasix didn't help the swelling and the anti-fungal salve was only slowly helping the open sore.

Then last Saturday I put a different band-aid over the sore after rubbing it with the prescribed salve.  It was one of those band-aids that is like rubber in that it deforms easily and sticks well even to wet skin.  The next evening my skin was all red around one end of the band-aid.  It felt like a bad sunburn or chemical burn.  When we removed the band-aid the skin came off as well.  The new wound was bigger and uglier looking than the original.  So we placed the salve on both sores and placed a band-aid over the new sore.  Yes, we're smarter than the average bear so we place the band-aid at 90 degrees from the previous one and (I can't believe this) we used the same flexible, sticky band-aids.  The next morning (you guessed it!) removing the band-aid tore a 3/4 inch piece of skin.  The other end had generated a blister 3/4 inch in diameter and a 1/4 inch high.  The blistered had punctured and was leaking it fluid.

I got an appointment with the doctor Monday morning.  He said to stop using the salve and the band-aid that had caused the trouble (duh!) and had his male nurse dress the wound with 4 x 4 gauze sponges.  The doctor prescribed an antibiotic, prepared a specimen from the weeping blister, and told me to come back two days later to see how the wound was going.

Two days later, the wound isn't growing but it is uglier.  The culture indicated that another antibiotic was called for.  The nurse decided that it would heal better if the leg were not swollen.  After dressing the wound, he proceeded to wrap my leg with four layers of gauze, foamy stuff, ace bandage type cloth, and netted tubing.  I complained that I wouldn't be able to see the wound healing and he sympathized by saying he wouldn't be able to either.

I can still get my leg into my pants and my foot will fit into my sports shoe even with socks on.  (It won't fit into my dress shoes with or without socks)..  And I will wait until next Wednesday to look at the wound again.

the Root of all evil

I have a congenital orthopedic flaw.  I walk with my right foot about 30 degrees out from the proper alignment.  The flaw is in my genes and therefore has been passed on to my children and grandchildren.  It can be corrected by leg braces but, of course, this does not pass on to later generations.  

This flaw caused me to wear out the heel of my right shoe faster than normal and this frustrated my mother no end.  As a solution, when I started junior high she had steel taps nailed onto my shoes.  It was too bad I didn't have  any rhythm because you could hear me walking a block away.  The taps reduced the wear on my heels and they also reduced my traction.  This led to an embarrassing accident which has had long range effects on my life.  Walking down the junior high school steps, I slipped and tumbled head over heels, finally coming to rest with my face firmly planted on the polished cement floor of the basement level of our junior high building.  I was able to pick myself  up and check to see that all systems were go.  It seemed that my front teeth were a half inch further back than they should be but a quick prying motion with my thumb solved that. Other than being shook up a little, it seemed that no harm had been done.

Was I ever wrong!  Not only had I chipped one tooth but I had also killed the roots on that one and two others.  And those  three teeth would cause me problems the rest of my life.  The latest incident was just yesterday.

For the past week I had felt a pressure irritation in my front gums, a feeling that I was familiar with.  In the past it has meant an infected abscess, a pocket of dead cells and pus.  My dentist concurred and referred me to a specialist, an endodontist.  Luckily, I was able to get an appointment for a consultation even if it was 8:45 Friday morning.  I knew by experience that this doesn't go away so the quicker I could handle it, the better.  The consultation went well, almost exactly what I would have predicted.  Of course there were some unknowns because you can see only so much with an x-ray.  Only when you actually operate can you see what needs to be done.  But it looked like a "simple" operation taking less than an hour.

As I was negotiating an appointment next week for the operation, word came that an afternoon appointment had been canceled.  Would I like to come back Friday afternoon?  Well, yes and no.  I wanted it taken care of but I was still trying to used to the whole operation thing.

At 3:00 I came back.  At 5:30 I was standing somewhat unsteadily at the front desk to pay our portion of the $1,500 bill.  This was not the Friday I had planned for.  And of course the worst was yet to come as the anesthesia started to wear off and I could start feeling the incisions, sutures, and blunt trauma done to my gums.  I can tell I won't be doing much this weekend.

Slowing down or speeding up

Giving up a driving license is always a traumatic experience for people who have grown up with the freedom and flexibility to drive wherever we want without having to bother someone else.  (Most of us don't have a chauffeur at hand.)  And it is something that most of us have to deal with sometime.  Those of  us with a progressively disabling disease like Parkinson's just have to deal with it a little sooner.

A couple of people in my Parkinson's Support Group have shared with the group that they voluntarily gave up driving rather than push their luck.  I'm not at that point yet but I can feel that I'm creeping up on it.  Late in the evening, at night, or in rainy weather I feel much more uncomfortable driving than I used to.  Enough so that I have voluntarily cut back as much of that driving as I can.  Fortunately, Carolyn and I are usually going somewhere together during those difficult to drive times so it's usually not a problem.

At the same time I've requested additional physical therapy so that I can walk better and faster once I do get close to where I want to go.  I don't want to be stranded.

Vacationing with a disability - day 5

This was definitely a day of fun and excitement but it was also a day which reflected seriously upon the relationship of taking a vacation with a disability.  In my case, the disability is Parkinson’s Disease and the manifestation of this disability is difficulty in walking unassisted.

We had chosen to take a cruise today up along the Na Pali (the cliffs) shoreline and back again.   Along the way we were to have “breakfast, lunch, and a mid-morning snack, as well as having various historical and cultural highlights of the shore pointed out to us as we passed them.  The company failed miserably on these features although I don’t know how much blame would rest with the captain.  We were also to have a 20 to 30 minute time in the water for swimming and/or snorkeling.  The minimum qualifications were met on this score although the experience was so much less than we had in Maui with virtually the same tour description.  Finally, and I’m not enough of a boater to  know whether man or nature was responsible for this, but we had the fastest, roughest ride I’ve ever had on a catmarran.  Several people on board were sick including me and my sister who NEVER gets seasick. 

On the other hand, the crew did a MARVELOUS job taking care of the passengers.  I was asked several times how I was doing and every time I made a move to get up and move around the boat, one of the crew would be at my elbow offering assistance.  Sometimes I felt I was up against a zone defense trying to get a shot off.  They had received early warning that a “disabled person” would be on board and they were determined that I would have a positive experience and, above all, not get hurt or injured.  And although I definitely got special treatment, all passengers got above average attention.

When we arrived at the ticket counter, I was told to report dockside so that I could be "pre-boarded"

So Carolyn drove me over and turned me over to a crew member who promptly did ... nothing.   I finally took a walk around the dock portion of the ship while waiting for the rest of the passengers. 

When I did finally board it was at the same time as the others.  Fortunately it was easy enough to negotiate the ships passageways and ladders.  After I walked aboard with my walker, the crew stowed it away behind the mast where it stayed until the end of the cruise.  I realized I could get around a small boat like I do my bathroom because there were so many grab bars available. 

At one point I looked up to see that Carolyn had taken over the helm.  I thought the captain was aware of what she was doing but until he and a crew member  pulled this pose...

I wasn't sure.

Here's our little tour team Keith, Arnold, Revabeth, and Carolyn during a rare quiet moment aboard the ship.

                                                                                                                                                                                                                                   

During another quiet moment on board we watched spinner dolphins play alongside the ship.  

And, of course, there was our snorkeling time.  I didn't do as well as expected but much better than a couple of days.

The rest of the day we spent driving up Waielua canyon to see the gorgeous vistas from the various sightseeing pullouts.  The day ended with dinner at Wong’s, a local café whose motto must be less is more.  The food was a limited table buffet table, not quite what we had been expecting.

Vacationing with a disability - day 4

Fprtunately, most of the time I have dealt with my by simply making do with the equipment at hand.  For me that equipment on this trip has been a mobility scooter

and a rollator

We got this particular scooter since it comes apart in 4 simple pieces which can be lifted separately into and out  of the car.  But we have found that it is more expeditious for Carolyn and I together to lift the whole machine at once.

The thing is, I need both pieces of equipment in the car so I can pick which one would be appropriate - the rollator for short walks and crowded shops, the scooter for long walks and more roomy shops and attractions.

Today we did some shopping, eating, and picking up roommates.

The concierge had told us of some shopping centers that had a good variety of souvenirs (although all the souvenirs here are made in the Phillipines).  Carolyn bought souvenirs for all the grandkids as well as postcards for all of them.  Me, I bought a new straw hat.

The concierge had also mentioned a couple of "hole in the wall" lunch counters that were worth visiting.

It was probably more luck than skill that we found this place.  Note the sign on the front of the building.

It clearly says "Duane's Ono Char Burgers", right.

And finally, we picked up my sister Revebeth and her husband Keith at the airport.  I called them roommates because they are sharing our time share this week and because Revabeth and Carolyn were roommates in college.  But that's another story.

Vacationing with a disability - day 3

Did you ever wonder why there are so few, if any, wheelchairs on the beach?  No, of course you haven't.  Unless you use one, you seldom think of wheelchairs at all, let alone at the beach.  Same goes for walkers or mobility scooters.  Well, today I discovered the answer and in the process had one of those life changing experiences you're not sure you want to write home about.

This morning after listening to the concierge talk about all the things to see and do around the time share complex and Kauai, Carolyn and I decided to sign up for a snorkeling cruise for Tuesday morning which would give us a chance to try out the snorkeling sets we bought at Sam's Club before coming here.  

First, we got on our swimming suits and went to one of the pools in the complex.  With mask, snorkel, and fins in place we swam randomly around the pool.  The last time we were in Hawaii we had some snorkels with defectively installed valves and I wanted to find out if that was the case this time.  Everything was in perfect working condition.  With the ocean just a couple hundred feet from the pool, we decided to try out the equipment there.

According to the concierge, one of the best places in Kauai to snorkel was a rocky sand bar just 300 feet east of the hotel beachfront.  We knew we couldn't get there with my scooter and walking unassisted was out of the question.  We tried my rolling walker but it too sank into the sand even when we tried the wet sand down by the water line.  Carolyn then suggested that we rent boogie boards and swim over to the bar.  I had done so well swimming in the pool that it made sense to swim over and the boards would let us rest a little if necessary.  I could also use the board as a cane or crutch walking over the sand and through the shallow water.

All was working well as we entered the water but when I tried to ride the board, it slipped out of my left hand, the hand affected by significant bursitis.  I tried again and again.  My mask, which I hadn't pulled down on my face slipped off and now I was fighting to put it back on while keeping the boogie board on a tether and treading water.  The ocean floor drops quickly from the beach.  Finally, I realized I was tiring and told Carolyn I wasn't having fun anymore.  About then, I lost hold of my mask and snorkel and stubbed my toe on a rock.  I was tired and frustrated.  Of course, as soon as I hit the sand I remembered that I can't walk unassisted.  The crashing surf twisted me around and rolled me over to remind me how much  less control one has sitting on the beach versus standing.  By the time Carolyn reached me I couldn't even stand with her help.  Fortunately, a young woman realized my plight and came over to help.  In other circumstances, I would have really enjoyed having a lovely woman on each arm but at this time I was just glad to be led off the beach.

Once assured I was okay, Carolyn thanked the young woman then headed back out to see if my mask and snorkel were anywhere in sight.  She tried for 15 or 20 minutes without success.  She had no problem with the equipment or the boogie board.  My sense of independence just continues to be eaten away and Carolyn has to be wondering if taking this vacation at this time was a smart idea.

By the time we had cleaned off all the sand and become presentable again, we were starving.  The  concierge had recommended Bubba's Burgers, only a short drive from the time-share.  In contrast to Burger King, Bubba's motto is "Have it our way, right away; your way, some delay."  "their way" is a plain patty in a sesame seed bun with mustard, relish, and diced onions.  It isn't bad but it could never compete with In and Out Burgers.

This evening we attended what we thought was going to be a professional hula performance but turned out to be a student recital for the largest hula dance school on the island.  Like other dance recitals we have attended, each class is given a chance to showcase their accomplishments so parents can ooh and aah appropriately.  They also had some of the moms strut their stuff.  

We were impressed that the costumes were all so modest.  

At least until they came to the Tahiti portion of the program, then the dresses got really skimpy.  But throughout the entire program the emphasis was on smooth, graceful movements.

Vacationing with a disability - day 2

One of the things that both Carolyn and I like to do in an unfamiliar environment is to get the lay of the land, try to orient ourselves with our surroundings.  This, of course, is directly and immediately affected by my disability.

For example, in the course of walking around the grounds of the time-share we came to the beach used by most of the guests here.  As I was  using the scooter, I couldn't venture beyond the end of the pavement, the scooter would just sink in the sand and go nowhere.  

So I wasn't able to get closer to these people taking standing surfboard lessons.

Or these enjoying a picnic while the tide was low.

Still, I had little problem visiting the art show in the lobby.

On the other hand, as we visited a farmer's market on the campus of the junior college I decided to use my walker so I was not restricted from going anywhere - from the jam vendor...

... to the mixed greens vendor...

... to the purveyor of chocolate covered frozen bananas.  I do notice that there's more of a communication barrier when one face is two feet higher than the other face.

Driving around half of the island we met several roadside entrepreneurs selling everything from coconuts to sweet corn. 

We also managed to photograph some beautiful old buildings along the way.

And finally, we stopped at a scenic overlook along our drive to the north side of the island.  I had gotten in and out so many times, I decided to just stay in the car to see what sights I would see from the front seat.  No sooner had Carolyn moved off some 30 feet to take pictures when my view of the valley was obstructed by this thoughtless maiden.  I was oh so ready to honk the horn to let her know she needed to move on when she did it without any hint of mine.

Vacationing with a disability

I wasn't sure how to title this entry.  "Hawaii AGAIN!!" seemed a little crass.  "Limping through  paradise" sounded like a cliche.  I didn't want to overly emphasize disability but, as we discovered, there is a significant difference in the things you can undertake and the time that you spend on various activities when you're living with a disability.  I'm going to try during this series of posts to explain some of the things we discovered related to the disability and other discoveries not related to the disability.

At the end of our first day of vacation we were discouraged because we hadn't done any sightseeing or even resting and relaxing.  No matter how hard we tried, we just didn't have enough oomph to do much on our first day of vacation EXCEPT

• wake up at some ungodly hour after a night of fitful sleep wondering if we had packed everything we needed
• manage to get all the luggage (including my walker) from the car to the check-in  counter
• negotiate the security process in a wheelchair (me) and with a walker as a luggage cart (Carolyn)
• similarly deal with obstacles at LAX and Lihue airports
• pick up a minivan and scooter previously arranged for (see photo above)
• check in at our time-share
• purchase a small supply of food
• keep going until 20 hours after we got up that morning

And we call this a vacation!   It was doubly hard on Carolyn because I couldn't carry or drag any of the luggage and somehow managed to forget/lose the information on the scooter so we had  to ask the hotel concierge to track down our reservation.

On the positive side, after a good, restful night of sleep we hope to enjoy the hotel including some of the pools and fountains our rooms look out  onto.

As you can tell, the grounds are just fantastic.

Because I was often less than useless, Carolyn often made 3 trips to my 1.  I would "watch" the luggage while she would lug the luggage.  She would register our rooms, shop for groceries, and order lunch while I sat in the car.  Maybe I can do more tomorrow.

Hope-ful or Hope-less

Two weeks ago my doctor started me on Sinemet, the brand name for Carbidopa/Levodopa, two drugs that are considered "the gold standard" for treatment of Parkinson's Disease.  That is, if anything is going to minimize the symptoms of Parkinson's this medicine should.  However, doctors are somewhat hesitant to prescribe this medicate for several reasons including:

1.  There are numerous potential side effects ranging from actually increasing the symptoms to dizziness, nausea, vomiting, trouble sleeping, and headache and in rare cases greatly increased eye blinking/twitching, irregular heartbeat, fainting, mental/mood changes (e.g., confusion, depression, hallucinations, thoughts of suicide) seizures, etc.  This is not a medication to be taken lightly.

2.  Some studies have seemed to show that the drug's effectiveness decreases over time so that it may not be at all effective after say 10 years.  Thus, doctors would want to use it only after other drugs have been tried.  

Anyway, I have now been using the medicine for two weeks and have noticed no side effects whatsoever.  That's good news.  The bad news is that I haven't seen any positive effects either.

EXCEPT that yesterday for a period of about 4 hours I was able to walk with just a cane.  My balance and stability were back enough for me to turn back the clock a year.  I looked forward to the same effect today but it was not to be.  The doctor did warn me that it may take a while to determine the proper dosage.  He is certain that I will see some improvement.

My Hot Rod "Q"

Using a rolling walker has become more and more problematic and dangerous to me and people around me.  So three weeks ago we rented a power wheel chair to see if it would make sense to have that in my life.  Three weeks  into the rental period we were convinced it would make a positive difference.

The price difference between a new machine and a slightly used one was high enough that we decided it would make more sense to buy a used machine if we could find one.  We called on a couple of listings in Craig's list and also asked Capital City Home Medical Supplies, the company from which we rented a machine.

This past weekend through a referral from Capital City we connected with a man from Reno whose mother had just passed away leaving an almost brand new power chair.  After some half-hearted negotiating we paid for and took possession of a Quantum 600 SL power chair.

Ed and Tiff came over to admire it as well as help me make some minor adjustments to the arm rests.

Here's Q climbing in the van for his next adventure:

Watch out, world, here I come.

CPAP - Class

No, that's not CRAP, it's CPAP or Continuous Positive Airway Pressure.  My sleep test a few weeks ago determined that without continuous  positive air pressure in my airway I actually stop breathing which isn't a good thing.  Between normal breathing and not breathing at all I snore loudly and a lot.  I don't even have to fall asleep to snore - just relax a little.  

Anyway, I've now been on the machine (pictured below next to our bed) two nights - long enough to think that I may be able to get used to it, not long enough to see any benefits yet.  Actually, I"m working into it as I could only take it 2 hours the first night and 4 hours the second night.  Sometime this week I should be able to sleep through the night with it.

Before using the machine I had to attend a class at the Kaiser hospital.  The Respiratory Therapist (RT) was certainly qualified enough but spent too much time introducing herself and the machine and not enough time on fitting the masks and explaining what "therapy" will actually consist of.  She hinted that we would be meeting again but didn't say when or how.

For a machine that belongs to each patient, I found the RT quite possessive. We were shown how everything fits into a nice carrying case but not given a chance to try it ourselves.  We were shown how to see what the air pressure setting is but not allowed to set it or even see how to set it.

But the biggest problem I had with the class is that by the time we got to fitting on the masks there was little time left.  The RT barely had time to demonstrate how to put a mask on let alone how to adjust it.  A couple of us ended up with a choice of two masks and there was no discussion of which one would be best for us or how one would even choose.  Actually there was some argument whether we would be allowed to choose.

In spite of the class, I have been able to adjust the mask and use the machine.  I'm impressed how the machine can sense the breathing resistance or need for air and adjust it's pressure accordingly.  Now I'm waiting to be impressed by a good night's sleep and a more healthy, peppy day.