My MS Story Chapter 30- Taking the iBOT Home

There can be no more intimate relationship between a mechanical device and a human being than that between a wheelchair and its owner. The dread that we feel about the possibility of needing such a device may be best captured by the phrase- “confined to a wheelchair.” Understandably, I expect that the most common question asked of doctors when they deliver a diagnosis of MS is, “Will I end up in a wheelchair?”

For me, that question was finally answered in April of 2008, when I tried out the iBOT. Ya, it was time for a wheelchair- this wheelchair.

In June of 2008 I placed the order for my iBOT. Like any good American, I charged the whole damn thing to my credit card. I had some plans of how to raise the money for this expensive device (I certainly had no help from my insurance company), but I couldn't wait until I actually had the money in hand before proceeding. Remember, I was on a mission.

A few weeks later I learned that my iBOT would be ready for pickup and training on July 11. I awaited this day with a degree of anticipation that was similar to what I felt leading up to my graduation from high school or my first day on the job after college (but not on par with my wedding day or the birth days of my children). It was a big, big deal.

Notice that I count my iBOT pickup day among my best days, not among my worst. I’ve learned through my procession of assistive devices that the bad days are those just before you accept a new adaptation. Those days are a struggle. The first days with your new assistive device, even though they mark an unfortunate milestone, are all about newfound mobility.

The day that I picked up my iBOT I underwent 8 hours of in-depth training. Kim accompanied me so that she could become qualified as a stair climbing assistant. What is that? Well, if the stairs I want to climb have an adequate hand railing, then I can climb them solo. However, many stairs do not have a proper railing, and that's when I need an assistant. Kim trained for about four hours that day to become qualified.

Kim and I arrived first thing in the morning at the same rehab hospital where I had been evaluated for the iBOT a couple of months earlier. This time, both Kate (the lady who gave me my home demonstration in April) and Joanne (the lady who conducted the detailed evaluation in May) were present for the entire day.

I recently read a book that describes the training regimen for Navy Seals. I see some similarities between Seal training and iBOT training. Sure, my iBOT training was only for a single day, and although Kate and Joanne sometimes used their “serious voices”, they rarely made me do push-ups and almost never shot live ammunition over my head.

But, as with the Navy Seal training, my instructors did force feed copious amounts of information into my head in a short period of time and made me practice and practice until I could clean my rifle, I mean operate my wheelchair, in my sleep. At the end of the day they tested me to make sure that I had mastered the necessary skills. And, as with Navy Seals, I came out a different person than I had gone in as. In my case, I emerged as this Cyborg that iBOT users morph into- an organism that has both artificial and natural systems.

I was required to demonstrate certain proficiencies in order to qualify for advanced privileges with the iBOT. For example, I needed to show that I could climb stairs solo in order to have that mode enabled. If I was unable to demonstrate that proficiency, there was a way for Joanne to configure the iBOT so that I could only climb stairs with the help of an assistant (Kim). I passed the solo stair climbing test.

There are several top-end speed settings on the iBOT, configurable only by an authorized therapist. Of course, I wanted to qualify for the fastest speed. I don't know if Joanne was messing with my head or not (drill instructor that she was), but early in the day she stated that new users never walk out of there, I mean roll out of there, with the fastest speed setting enabled. Later in the afternoon I was thrilled when she told me that she would configure my iBOT for maximum speed. Thanks Joanne- the frightened looks I get today from innocent pedestrians are priceless.

The programming for the iBOT is unbelievably complex. The logic is designed to keep the operator from doing anything stupid or dangerous. There are permissives, alarms, and indicators that provide guidance, and sometimes even take over control of the device. Kate and Joanne would sometimes scratch their heads and say things like, “You’re doing something the iBOT doesn’t want you to do, but I’m not sure what it is.” They would always figure it out though.

At the end of the day Kim and I had to watch a short film that graphically demonstrated what can happen when you operate the iBOT improperly. The actors were trained stuntmen. So far, I’ve not emulated any of the spectacular crashes shown on that video.

After my final exam I signed a bunch of papers, and the training was over. Smiles all around. Then, on the drive home, it was just me, Kim, and the iBOT. Kate and Joanne were no longer there, approving or disapproving of my every move. This was not unlike the drive home from the hospital so many years earlier with our first child- wondering if I was ready for the added responsibility, but excited about the future.

What a great day that was. Kate and Joanne were consummate professionals. With the iBOT no longer being sold, I don’t know where Kate is now. I think Joanne is still working as a therapist at the rehab hospital. I wish them both the best.

Here's a picture of the four of us celebrating the big day.



Left to right: Kate, Kim, Mitch, my iBOT in balance mode, Joanne

Perhaps I exaggerated. They don’t look that scary after all.


Some Links


For more information on the iBOT wheelchair, please see my four previous posts:

This is Not My Mother’s Wheelchair (Part 1)
This is Not My Mother’s Wheelchair (Part 2)
What Would Mitch Do? or WWMD?
My MS Story #29- The Wheelchair Decision

Also, to see my iBOT in action watch these two videos:

Taking the iBOT to the Beach
Taking the iBOT to Two Lights State Park

My MS Story Chapter 29- The Wheelchair Decision

“For me, the wheelchair symbolizes disability in a way a cane does not.”

- Annette Funicello (MS since 1987)

By the spring of 2008 I had become a proficient scooter pilot. I drove the “blue streak” almost everywhere I went, indoors and out. I always carried the forearm crutches on the back, but I found myself using them less and less as my leg strength continued to deteriorate.

The more I used the scooter, the more evident its limitations became to me.  The seat was not designed for continuous occupation. Because I needed to keep two hands on the tiller when driving, it was difficult to carry any items with me. The tiller itself prevented me from getting close to desks and tables. Being a three wheeled scooter, it was tippy on uneven surfaces.

Neither did the scooter climb curbs, lift me up to eye level with standing people, operate in four wheel drive mode, or negotiate stairs.

I can't remember exactly how it happened, whether it was over a period of minutes or days or weeks, but eventually I began to consider graduating to a wheelchair. That would be a huge step for me. Thus far I had progressed from a cane, to two forearm crutches, to the scooter. These assistive devices each implied a certain level of disability; a wheelchair represented the ultimate level of disability, well mobile disability anyway. I suppose continuous occupation of a hospital bed represents the ultimate level of immobile disability.

I saw my first iBOT on a television commercial in the middle of the night. I perused their website, and I was instantly blown away. If I had to be in a wheelchair, this baby might make it a little more palatable. I signed up for a demo, and received a phone call a few days later from Independence Technology to schedule a home test drive.

On April 10, 2008 Kate showed up at my house. She unloaded the demonstration iBOT from her van and brought it inside. I anxiously transferred from my scooter to the iBOT. Kate pushed a flurry of buttons to calibrate the iBOT for my weight, and then we were off and running. We tried out both the standard mode and balance mode inside. Since I didn't have any steps in my house we moved to the back deck to play with the stair climbing mode.

In Maine, there’s a good reason that we refer to the month of April as mud season. My lawn was still soft from the recently melted snow. Nevertheless, we put the iBOT in four-wheel-drive mode and slogged all around the yard. I was at once impressed and horrified as I drove the iBOT over my lawn, leaving two parallel ruts in my wake (they disappeared after a few weeks).

Here’s my journal entry from that day:

“Had in home test drive of iBOT 4000. Must have it.”

That brief entry says it all. I was on a mission.

The next step in the process required me to spend a few hours at a rehabilitation hospital in New Hampshire. It was a two-way interview. I would spend an afternoon further evaluating the iBOT (this was enjoyable, but unnecessary). At the same time, an independent consultant would run me through the ropes to make sure that I was physically, mentally, and otherwise capable of operating this complex device.

I drove to the rehab hospital and met up with Joanne. She helped me learn all the features of the iBOT, spending a little more time than Kate had with each mode. Joanne scrutinized my every move and asked me a million questions about my condition, and about how I intended to use the iBOT.

I was, however, beset by a lingering doubt. Did I really need such a robust assistive device? I felt that all of my adaptations to date had been justified, and timely. But was I jumping the gun on this move? I mean, I could still walk short distances using my two forearm crutches. It was getting harder and harder all the time, but I still could. Was this the right time in my disease progression for a power wheelchair?

Near the end of our evaluation I shared this concern with Joanne. She agreed that I might not be an ideal candidate for this chair, but for a completely different reason. She was somewhat hesitant to recommend me for the iBOT, not because I wasn't ready for it, but because she worried that I might not be able to operate it for very many years, due to my worsening MS.

I was taken aback. “What you mean?” I asked, naively. “What could go wrong with me that would prevent me from being able to operate this wheelchair?”

Note to self: be careful what questions you ask, as you may not like the answers.

Joanne hesitated, and then said, "Well, since you asked…”

She methodically spelled out the declines in function that I might experience in the coming years (some of which have already come true). Suffice it to say this was a bit of a wake-up call for me. I never again worried whether I was ready for a power wheelchair. Today, like Joanne, I only worry about how many more years I can continue to enjoy the iBOT.

Joanne also pointed out that some power wheelchairs are designed to address the issues of more severely disabled people. The iBOT is not one of those chairs.

“OK. Thanks. But none of that bothers me,” I said. “I've got to have one of these chairs. What's the next step?”

I had made the wheelchair decision.


Links


For more information on the iBOT wheelchair, please see my three previous posts:

This is Not My Mother’s Wheelchair (Part 1)
This is Not My Mother’s Wheelchair (Part 2)
What Would Mitch Do? or WWMD?

Also, to see my iBOT in action watch these two videos:

Taking the iBOT to the Beach
Taking the iBOT to Two Lights State Park

*note that the iBOT is no longer available for sale

CCSVI- Is this the calm before the storm?

“With most men, unbelief in one thing springs from blind belief in another.”
  - Georg Christoph Lichtenberg

Image from CCSVI as a Cause of MS

I’ve been living with multiple sclerosis for over 8 years, but I’ve never seen anything captivate the MS community quite like Chronic Cerebrospinal Venous Insufficiency, or CCSVI.

This theory hypothesizes that the string of events in a person’s life which results in their having MS does not begin with an autoimmune response, as has been the generally accepted notion for many years.  The apparent autoimmune response is instead an overzealous immune system reaction to iron deposition in the central nervous system (CNS).   

The iron deposits come about because of low and irregular blood flow leaving the CNS through two types of veins- the internal jugular veins and the azygos vein (I’m getting close to a root cause here, so stick with me).  The poor blood flow is caused by various abnormalities, called stenosis, in these veins. Is MS really, at its core, a plumbing problem?  Wouldn’t that be something. 

For more details about CCSVI please read my previous post, watch this CTV video, or look over this Facebook page.

This concept has such upside potential that I find myself temporarily disinterested in all other MS research. For the moment, everything else is just so much background noise to me.

Dr. Paolo Zamboni of the University of Ferrara (Italy) conducted the basic research and coined the term CCSVI, and also designed an angioplasty treatment for the affected veins which he aptly named "The Liberation Treatment".  If his theory stands up to scrutiny, he’ll become our Jonas Salk. But his analysis has yet to be independently verified. In the medical research community, nothing counts as legitimate research if it is not verified by at least one other source, preferably several other sources. If we are lucky, the first independent verification is only weeks away.

The Buffalo Neuroimaging Analysis Center (BNAC), a branch of the University of Buffalo Medical School, has completed phase 1 of a study, looking at 500 patients, which attempts to correlate CCSVI with MS. Plans are to continue with phase 2 of the study, looking at an additional 1200 patients. To prove a correlation, BNAC must show that most MS patients have CCSVI, and that most healthy people do not. Their phase 1 report is expected in early February. That’s getting close.

Although this study will attempt to prove correlation between the two conditions, it will not address the issue of causation. Therefore, even if a strong correlation is indicated, the questions will remain- is it CCSVI that causes MS, is it MS that causes CCSVI, or is there another condition that causes both? Furthermore, BNAC will not address treatment options for CCSVI, although others such as Zamboni, Dake, and Simka have made progress in that area. The BNAC study’s scope is quite limited, yet its results may turn the MS world completely upside-down.

I’m not privy to any information about what the BNAC results will look like.  The data could demonstrate no correlation between CCSVI and MS. If this happens then CCSVI won’t be dead, but it will lose much of its luster (I’ll start looking at the other MS research once again, for example). The study results could be mixed- many MS patients could have CCSVI but not most. That scenario would call for more study. But the most intriguing scenario, although not necessarily the most likely, is that the BNAC study will confirm Zamboni’s work and document a strong correlation between CCSVI and MS. If that happens, the period of relative calm will be over, and the storm will commence.

If the BNAC study debunks this whole concept, I may have a future blog post entitled “CCSVI- how were we so easily fooled?”  But frankly, that outcome is just not very interesting to think about.  For now, let’s consider what the MS world would look like if Zamboni’s theory is confirmed by the BNAC study. 

Regarding CCSVI, and so many other things in life, there are two groups of people: boxers and briefs, democrats and republicans, supporters and detractors. In this case I’ll call them the Go Faster Group and the Take Our Sweet Old Time Group. Those directly affected by MS will see positive news from BNAC as justification to immediately accelerate medical activity in this area.  Those involved in MS, but perhaps in a less personal way, may prefer a more cautious and deliberate course instead.  

Who will comprise the Take Our Sweet Old Time Group?

Traditional (numbers driven) research statisticians

Traditional medical professionals

Traditional MS organizations

Insurance companies

Guardians of the status quo, such as Big Pharmaceutical (who makes millions of dollars a year on the assumption that MS is primarily an autoimmune disorder)

What will the position of the Take Our Sweet Old Time Group be?

• Correlation does not prove causation. Before anyone gets too excited, and certainly before anyone takes drastic steps like spending money on diagnosis or treatment of CCSVI, we need further study to confirm that CCSVI actually causes MS, rather than the other way around. This could take years.
• It is too early to start lining up patients for risky treatments. Any treatments must be part of carefully monitored clinical trials. If patients are harmed, then lawsuits could ensue.
• We have a good stable of drugs currently approved by the FDA for use by MS patients. This is not the time to abandon those proven treatments.
• There are only so many neurologists (traditional MS doctors) and vascular surgeons (potentially new CCSVI doctors). If we don’t move slowly these doctors will be literally overrun with requests for diagnosis and treatment. We need to prevent chaos. We must control events, by proceeding deliberately.

None of these plodding scientists and administrators will themselves be suffering from the ravages of MS. None of their central nervous systems will be melting away a little bit each day. None of them will be on the brink of crushing, permanent, and total disability. If they were experiencing these things, they would belong to the second group.

Who will comprise the Go Faster Group?

MS patients, their close family and friends

Sympathetic or forward thinking medical professionals

Sympathetic or forward thinking MS organizations

Sympathetic or forward thinking researchers

What will the position of the Go Faster Group be?

• If time were not an issue, we would agree that more data is needed. But we don’t enjoy the luxury of time. Every minute spent on further proving the theory before acting on it means more irreversible, permanent damage to our central nervous systems. For some patients, time wasted means the difference between walking and not walking, seeing or not seeing, even living or not living.
• There are well thought out models of how CCSVI might cause MS. Nobody has presented a theory of how MS might cause CCSVI. If it quacks like a duck, it almost certainly is a duck.
• The standard models used for approving new treatments are inadequate here.  This is a special case- a revolutionary idea. We need to break the mold so that we get treatment to as many people as possible, as quickly as possible, while still managing the risks to patients.
• The status quo is not acceptable. Today we have a bevy of treatment options, all of which involve sticking a needle into our bodies and injecting designer pharmaceuticals. These treatments have had marginal success in slowing down the disease, have caused any number of horrible side effects up to and including death, have cost us outrageous amounts of money, and have garnered huge profits for the pharmaceutical companies. Furthermore, these treatments don’t work at all for large subsets of the MS population (my subset, for example).

Hence, the gathering storm, which I reference in the title of this post. The Take Our Sweet Old Time Group will have their foot on the brake pedal, coasting warily toward the eventual solution.  The Go Faster Group will have their foot firmly planted on the gas pedal, racing toward a destination nobody even knew existed, trying to get there before it is too late.  When met with resistance, the Go Faster’s will become loud, obnoxious, belligerent, and indignant.  At least I hope they will. 

But it doesn’t have to be this way. If we partner with visionary leaders from governments, the MS patient community, and the medical community, we can create a system that balances the needs of all parties, and still gets help to chronically ill people as quickly as possible.  For example, there are at least two diagnosis and treatment studies waiting in the wings- one at Stanford University and the other at the University of British Columbia.  But clinical trials like these will only address hundreds of patients at a time.  We’ll need to treat thousands of patients at a time.   

I don’t know what the BNAC data will show when released in early February. I won’t even hazard a guess.  But if CCSVI is proven, and I am diagnosed with this condition and treated for it, how will I feel? I'll feel like I just woke up from a horrible nightmare.

My MS Story Chapter 28- Disabled Travel Experiences

“Thank God men cannot fly, and lay waste the sky as well as the earth.”
~Henry David Thoreau

I wasn't intimidated at all by flying as a disabled person, solo or with other people. I was grateful for the travel opportunities that my job afforded me. It's just that my legs didn't work, so I had to use a scooter for mobility, and I had to drive with my hands. Piece of cake.


One of my first solo trips with my scooter was in February of 2008. I flew from Portland, Maine to Portland, Oregon in order to visit our West Coast office. I had been responsible for certain East Coast Operations for a couple of years, but had just recently been given responsibility for the left coast as well.

For the first time in my life I made use of a handicapped taxi cab, in this case to transport me from the airport to my hotel in Portland, Oregon. Until then, I didn’t even know that all large cities had such taxis. The office was across the street from the hotel, therefore I didn't need a rental car. I spent two nights in Portland, and then took the same taxi back to the airport so that I could fly to Denver for a conference and trade show.

In Denver I rented a wheelchair accessible van with hand controls. I spent three days at this huge tradeshow and conference, putting a lot of miles on my scooter. I encountered no problems at all in Denver. From there, I flew to Las Vegas to spend the weekend with my good friend Dave.

Dave had a pickup truck, so my strategy was to disassemble the scooter into three pieces and load it into the back of his truck whenever we drove from point A to point B. Dave’s truck didn’t have running boards like mine did, so he had to give me a little boost when I was getting into the passenger seat. I learned that Vegas is an extremely accessible city if you have a power wheelchair or scooter -- not so much if you are just a slow walker. There is too damn much territory to cover.
 
Dave is a lifelong bachelor who has an Electrical Engineering degree, but chooses to make a very nice living from his love of music instead. Vegas is a great place to create music and enjoy the single life. Dave’s tendency toward serial monogamy has so far prevented him from falling victim to the more self-destructive temptations in Vegas. Speaking from experience, there is no greater deterrent to bad male behavior than the knowledge that a wonderful woman is waiting for you when you get home (and by wonderful I mean all-knowing and a little bit scary).

One evening we met up with Dave’s fiancé, Teena, and decided to walk up and down the famous Vegas strip to see what kind of fun we could stir up. Well, I scooted and they walked.

A couple of times during the evening, being the gentleman that I was, I offered the lovely Teena the opportunity to sit on my lap and enjoy a ride on my scooter. She always accepted. The last time I made this offer I took my hands off the steering tiller and told her that she was in charge of the driving.

Technically, that was a mistake. But the result was hilarious. She was a terrible driver, like a teenager on her first day behind the wheel.  It probably didn’t help that we had both put away a few beers. We zipped through the crowded casinos, Teena in my lap with hands on the controls, at a high rate of speed, with total disregard for the safety of everyone in our path. People were literally diving out of the way to keep from being run over.

If there are two groups of people who are given a free pass for reckless behavior like this, it is beautiful women and cripples. Even though we were completely out of control and laughing so hard that we could barely stay in the seat, nobody said a cross word to us. I’m sure there was carnage in our wake, but we never looked back. I still smile every time I recall that ride.

Just one month later, in March of 2008, I took an eight day solo trip to California. I rented a wheelchair accessible van with hand driving controls for the whole week. I spent a few days working out of our office in Long Beach and then spent a long weekend with relatives in Santa Barbara. On Easter Sunday we had a family picnic up in the mountains. If it wasn't for the wildfires, the earthquakes, the ridiculous real estate prices, and the fact that California is hopelessly bankrupt, I think I could live out my remaining days in Santa Barbara.

I had taken two major, solo trips with no difficulties. You might think that my travels in a scooter, using a wheelchair accessible van, could be embarrassing or leave me feeling conspicuous in some way. At the very least it must have been a huge pain in my ass, right? In fact, it was quite the opposite. Here I was, a guy with MS, traveling all over the country on business and pleasure, just like a normal person. These trips made me feel engaged in life.

Sometimes when I traveled alone in my scooter, and later in my wheelchair, airline attendants, hotel clerks, or car rental agents would ask me, “Are you traveling alone, sir?” I loved it when they posed that question, because delivering the response was so gratifying.

“Yes I am,” I would reply with great satisfaction.

Piece of cake.

My MS Story Chapter 27- Ramping Up My Scooter Use

“We must be willing to let go of the life we planned, so as to have the life that is waiting for us.”
- E.M. Forster


I had a system in place to support my occasional scooter use. This consisted of several ramps in my house and a standard minivan with the center row of seats removed.

But by late 2007, due to continued disease progression, I was ready for a promotion from occasional scooter user to frequent scooter user. This necessitated system upgrades in a couple of areas. The first thing we did was purchase a full-fledged wheelchair accessible van, with an automatic door and ramp system- no more manhandling that portable ramp every time I wanted to load or unload the scooter.

Wheelchair accessible vans can be very expensive (a cruel irony because there is a strong negative correlation between level of disability and level of income). A new van starts out at about $45,000. But we found a used one with low mileage for only $18,000. That was a stroke of luck. I won’t be so lucky when I buy my next one.

Another area that needed an upgrade was my workspace at the office. I spoke with my boss, a kind and considerate individual, and we commandeered an underutilized conference room. Just before the company canceling all discretionary spending due to the Great Recession, we renovated the former conference room into an office for me, with plenty of space to maneuver and park the scooter.

January 8, 2008 was significant- my first day at work with the scooter. Most of my coworkers had never seen me in this scooter (although many had seen me in a rented one at Callaway Gardens). I decided to announce my intentions via email to the entire office staff the night before my unveiling.  See below:






*******
Just wanted to give everyone fair warning that I’m going to start using my electric scooter when I come into the office.  I’m sharing this with you because I like most of you, and think you deserve to know a few things about me and my scooter:

1. It goes faster than you walk, and it is quite stealthy.  I apologize in advance for anyone whose toes I run over.  It has a horn, but I’ve disabled it so I won’t be inclined to honk at people who are slowing me down.       
2. Although it will be very tempting, please do not call “shotgun” and jump on the back of the scooter for a free ride to the coffee machine or copier.  A couple of folks have tried that and yes, the front tire of the scooter can come up off the ground.  And if you abscond with my scooter for some sort of a cross-office trek, you do so at your own peril.  It’s not as easy to maneuver as you might think. 
3. Yes, you may still see me use the forearm crutches from time to time, but I must tell you that the thrill of moving faster than everyone else, instead of slower than everyone else, and the ability to actually carry things other than myself, usually results in more scooter use and less crutches use. 
4. Louie, please do not don a mask, grab a machete, and do donuts with my scooter in the parking lot.  It will only scare the children next door….again. 

Thank you,


Mitch
*******

Some explanations are in order. First, I purposely made an effort to keep the email lighthearted and humorous. I wanted to set people at ease. I’m no Jerry Seinfeld, but I’ve found that the judicious use of comedy can be effective in keeping the “aw, poor Mitch” comments, or even similar private thoughts, to a minimum.

Regarding item 3 of the email, I correctly assumed that I would favor the scooter over the crutches, but I didn’t appreciate the extent to which that would be true.  After the first day that I brought the scooter to work, I can’t remember ever using the crutches in the office again.

And finally, who was this Louie guy, and why did he like scaring little kids with machetes? Interesting story…

I mentioned in a previous post that this was an office composed primarily of young professionals. As such, we celebrated Halloween with vigor, including an annual costume contest. One Halloween morning when I drove into the office, Louie, our IT guy, was riding a small motorcycle around and around the parking lot, wearing a full rubber mask and brandishing a machete in his hand. It was hilarious. Even though I couldn’t see his face, I knew who it was.  This was vintage Louie. 

However, the child day-care center across the street from us saw it differently. It turns out that Louie’s goodhearted attempt at celebrating Halloween scared the crap out of the children; at least that's what the cops told us when they stopped over to investigate. Who knows, maybe the kids were actually delighted and only their overprotective parents were afraid?  Either way, there was no harm done.

My aforementioned boss worked out of our Ohio corporate headquarters.  I had copied him on my little email announcement.  He replied by complimenting my humor, but then expressed concern about my health. This was a highly visible milestone in my disease progression, after all. Here was my response to him.

*******
I appreciate your concern.


As long as the symptoms stay in my legs I’ll be good to go.  I’m lucky to have a job that suits my ailment well.  The office environment with occasional travel is very manageable for me.  However, if the MS starts spreading to the rest of my body I’m screwed.  There is no way to predict if it will stay south of the belt or migrate up.


We all have great uncertainty about what our futures hold.  Any of us can be stricken with a disease, hit by a delivery truck, or killed by terrorists at any moment.  The primary cause of my uncertain future is just there for all to see.  That’s the only difference.


So Carpe Diem!


Thanks,


Mitch
*******

Since 2008 the MS has indeed spread to my upper body.  Therefore, I must decide to either accept my statement above or reject it.  Unfortunately, I believe that I saw things clearly back then.  I am, in many ways, screwed.

But, as Forster suggested,  I have let go of the life I had planned, so as to have (even embrace) the life that is waiting for me.  What other choice do I have?   

My MS Story Chapter 26- Our Housing Carousel (part two of two)

If living conditions don't stop improving in this country, we're going to run out of humble beginnings for our great men.
  - Russell P. Askue



House number four was our biggest, grandest house. See above. 

There was one characteristic of this dwelling that was both a blessing and a curse. The house literally sat on top of a small, steep hill. There was a considerable drop-off as you walked down the driveway from the house to the street. To get to the flat part of the back yard you had to weave your way down the other side of the same hill (see below). In fact, in the last couple of years we lived there the only way I could get to the back yard was to ride my ATV down the hill.



However, living on this rock outcropping did bring with it a unique visual perspective. The dining room was in a corner of the house with ample windows on both walls. Because many of the trees were rooted in the ground 25 or so feet below the dining room windows, when sitting at the table it felt as if I was living in the canopy of a rainforest, safe from the dangers below. I enjoyed a birds eye view of that part of a mature tree which we normally only see from the ground, with our heads tilted uncomfortably upward. This tree-house effect was particularly lovely in the summertime, when the oaks and maples were lush, green, and full.  See the dining room, below. 

 

During the five years that we lived in house number four, I progressed from having only slight difficulty walking to having significant difficulty walking.

My strategy was to descend the staircase from our second story bedroom only once in the morning, and ascend the staircase only once in the evening. I had an elaborate procedure that involved forearm crutches and the stair railing. This worked well for a few years, then not so much.

One day I spoke up. “You know, honey,” I said, “we either need to install one of those chair lifts on the stairs, or we need to switch bedrooms with Amy, so we are sleeping on the bottom floor of the house. I almost fell down the stairs this morning.”

My wife replied, “I've been thinking. The three of you (meaning me and the two children) make messes all day in this huge house and I’m pretty much the only one who cleans them up. You can’t get around the yard well anymore. You’re struggling with the stairs. Now we're going to give our teenage daughter a huge master suite with a Jacuzzi tub, private balcony, and double walk-in closet, while we live in a small bedroom downstairs? Why don't we move to a smaller, flatter house instead?"

“But doesn’t size matter?” I asked.

“Obviously not to me,” she responded, deadpan.

Ouch.

She was right- about the house. What we really needed, and what we should have purchased when we first relocated to Southern Maine, was a single story house. There were two options- build or buy.

I researched floor plans for accessible homes. There's a style of home layout, called Universal Design, which is appropriate for all types of families, whether or not anyone is handicapped. The houses are perfectly flat with no elevation changes, and can be made accessible for specific needs, like wheelchair use. Even with young, healthy families you never know when someone may become disabled, either permanently or temporarily, and you never know when an elderly or disabled person might come to visit.

We eventually decided that a house building project was just too large of an undertaking, so we began to look for the most suitable single story house that we could find.

House number four sold in the summer of 2006, in what had become a past-peak real estate market. Because Scarborough (location of house number three) had so many more houses to choose from, we found ourselves concentrating on that town. After a few unaccepted offers on a few houses, we finally got a contract on a single story house in Scarborough- our house number five.

It's remarkable how difficult it is to find a perfectly flat ranch-style house. There is almost always an elevation change from the garage to the house and from the yard to the house. It is also common to have 6 inch or so elevation changes here or there between rooms. It drives me crazy. Why do builders always introduce these unnecessary obstacles?

But I can still remember life before I became disabled- barely. I would have never concerned myself with issues like unnecessary elevation changes in ranch houses.  Heck, I probably would even have thought of them as aesthetically pleasing. MS has altered my perspective on so many things.

The best we could do was to find a house that, although it wasn't flat, it could be made quite accessible with a few modifications. We remodeled the bathroom to have a roll-in shower, made the doors wider, and added a few ramps. We've been living in this house for 3 1/2 years now, and although it's not perfectly accessible (the kitchen is the biggest problem), it's pretty well suited for me. I think we could live here forever. This is a statement we’ve made about every house we’ve ever lived in. Ha! Not even close.

Below are pictures of two of the ramps we’ve installed.  Phoebe and Oreo like the ramp into the sunken living room. 



Below are before and after pictures of the master bathroom.



So why not stay in house number five indefinitely?

The problem with this house (there’s always a problem) is that it's in a suburban neighborhood. That's perfect, as long as I can drive. I expect that within the next year or so, however, my PPMS will progress to the point where I can no longer operate a motor vehicle (I already drive with hand controls, and my hands are getting weaker). I’ll need to somehow counteract this loss of independence.

Given that I no longer work, and thus sit home all day, once I can no longer drive I’ll want to live in a different kind of neighborhood. I’ll want wheelchair access from my home to some sort of shopping, some sort of nature park along the ocean, and some sort of entertainment. I'll essentially be looking for a more urban setting- probably a condo.

Home number six, I know you're out there, and I'll be coming for you soon enough. But when I do move in, let's not get too attached to one another. At some point I’ll identify some critical flaw in your layout or location, like I always do, and will move on.  Don't take it personally.  You’ll just be another stop on my perpetual housing carousel.

My MS Story Chapter 25- Our Housing Carousel (part one of two)

“I have a microwave fireplace in my house. The other night I laid down in front of the fire for the evening in two minutes.”
- Stephen Wright

My wife and I are only in our mid-40s and we’ve already bought five houses. My noticeably older, arguably more frugal, and understandably more equity-rich brothers are still living in their first houses. If their mortgages aren't already paid off they must be getting close. We’re not even close to getting close.



We bought our first house in 1989, after three years of marriage. See the pictures above.  It was a comfortable 1940’s vintage home. My wife and I painted the house by ourselves and installed a cedar picket fence around a good portion of the property. We planted our first and last vegetable garden in the back yard (it only took one summer to realize that neither of us had a green thumb). We heated the home with a combination of fuel oil and firewood that my father-in-law helped me cut and split. We found it gratifying to pour sweat equity into our house. That is just one of life’s pleasures that I can no longer enjoy, due to MS.

We lived in this first house for five years, until we found and purchased the home of our dreams in 1994.



I still look back at that second house, pictured above, as my all-time favorite. It was an oversized ranch with an in-ground swimming pool and a three car attached, heated garage (and one bay had a maintenance pit like an old-fashioned filling station). If you jumped off the roof of the house at just the right location, your momentum would propel you to the middle of the deep end of the swimming pool. Even after you were aware of this interesting fact, it was a little crazy to actually jump. But what adjective should I use to describe my friend Mark, who was the first to make this leap on the hunch that it just might work? When we had parties I expended significant effort to keep my friends from jumping off the roof. But they were a crafty lot.

The finished basement, shown on the right,  provided an ideal party/entertainment venue. We had a pool table, ping pong table, air hockey table, bar, TV, couch, and even a velvet wall-hanging with dogs playing pool on it. I also kept a treadmill in the basement. I was using the treadmill when I noticed what I was later able to identify as my first MS symptom.

We lived in that house for six years. In the summer of 2000, when we made the decision to relocate from Northern to Southern Maine, we put the dream house up for sale.



We didn’t waste much time buying our third house once we arrived in Southern Maine, and we were living in this Scarborough home by January of 2001. I still had not been diagnosed with MS at the time, but we knew something was going on with me. Based on the type of house that we purchased, however, we obviously were not anticipating what my future held.  See the pictures below. 



What?  Is the snowbank blocking your view of the front of the house?  That’s winter in Maine- some years. 

This was a cool house. I don't know what style to call it, but imagine that you took a two story colonial and split it down the middle lengthwise, and then you took the back half of the house and raised it up one half story. There were four distinct levels to the house, with three short staircases connecting them. When moving around this house I was forever encountering one of these staircases.

In October of that same year my medical mystery was solved. I was diagnosed with MS. A few months later we realized that we were living in the wrong type of house. I was starting to have trouble with all those stairs.

In the spring of 2002 we put our third house up for sale. Our goal was to move into a home that was more suitable for a person with growing mobility problems. At the same time it made sense to buy a house in the next town over- Cape Elizabeth. Kim was a guidance counselor there and both of our kids attended school in Cape. It was becoming a burden for Kim to transport them to and from school each day, with all their combined afterschool activities.

The year 2002 was essentially the peak of the real estate bubble. It was a seller’s market, so we decided to try to sell this house without a realtor. I read a book, purchased an advertisement in the paper (who does that today?), and made a sign. On the Saturday of Memorial Weekend we launched our sales effort.  We boldly asked $65,000 more for the house then we had paid, even though we had made no substantial improvements over the 16 month period we lived in it.

Memorial Day was spectacular that year, and this worked in our favor. All the flora was in full bloom. The grass was green and freshly mowed. The swimming pool water was crystal clear, or if you preferred, the ocean beckoned from just a mile away. While we were trying our best to simply enjoy a barbecue party with friends, people kept interrupting us in order to look at our house. Long story short- two parties got into a bidding war for the house, and we sold it that day, without a realtor, for $5,000 over our asking price, and for a $70,000 profit.

When I sensed what was developing on that Memorial day I cut off my alcohol intake to clear my head for the negotiations. But Kim was a little tipsy when she signed the purchase agreement in the late afternoon.

Those were the good old days in the real estate market. Remember them?

Next week…we finally get it right with our current home, but for how long?