Multiple Sclerosis: No Whining. I’m Grateful.

 

 

Ever feel like the rain's only falling on you?

I suppose I could take this personally. I don’t.

 

Being slammed with a chronic progressive neurological disease like Primary Progressive Multiple Sclerosis is no walk in the park. In my case, it was more like a slow-motion train wreck, which started the day my diagnosis came back and I jumped the tracks. Ever since, I’ve gradually been grinding to halt as I plow over everything standing in my path.

 

To be clear, in those first few years I ran around with a false sense of well-being as my life continued on with only slight impairments and minor dysfunction to my motor skills. That didn’t last.

 

I was happy to be "oblivious" at first.The biggest changes took hold with the onset of menopause. With increasingly serious symptoms and a noticeable reduction in mobility, the end of menopause translated to an ever-faster progression in the course of my disease. Hence, these last few years are highlighted by the many acquisitions of items intended to help me maintain some semblance of mobility, dignity, and minimal independence—not to mention the associated outflow of dollars required to purchase them.

 

Lest you think this a post dedicated to earning your pity, let me assure you it’s not. One need only imagine the lives of MS patients in the not-so-distant past—i.e. prior to the 1990’s—to find endless reasons to be grateful for all the products and services now at our disposal.

 

Let me take you through a brief summary of the past years to illustrate the point.

 

I embraced my cane.

My cane was also the perfect reaching tool. Just don’t lend it to anyone else or pretty soon they’ll be reaching for you.

I started using a cane 4 years after a condition known as “foot drop” impacted my balance and began to cause predictable mobility issues. Many of those with M.S. struggle with accepting walking aids into their lives, even when they’re as unobtrusive as a cane. However, I hoped to avoid perfecting the fine art of the face plant, and therefore embraced that cane with all my heart. Little did I realize at the time, but my new walking companion would also end up as an invaluable “reaching” instrument. It thus became the first of an ever-growing arsenal of tools at my disposal in my quest to live as normal a life as possible. In retrospect, some amount of training from a physical therapist in proper “cane etiquette” would have been highly useful. That way, I might have avoided a number of bad habits which hastened my gait disability.

 

By December of 2005, I was no longer able to drive my full-size 4X4 pickup truck with a standard transmission. Not only were my legs too weak to safely operate the clutch and brake, but my leg reaction time had become dangerously slow.

 

As one who has never enjoyed the process of going to a dealership and shopping for a new vehicle, I decided to try my luck at remote shopping by telephone. Zeroing in on the local Ford dealership, I asked to speak to the person who had expertise dealing with handicapped buyers, and was then transferred to a salesman named Cliff. Cliff made the entire process painless. I gave him my requirements and he went to work with a promise to call me back when he’d found something for me. It was as easy as ordering pizza!

 

My new truck was better.

New hand controls made all the difference.

Cliff located a new pickup that met my requirements within a few hours. He then made arrangements to have it driven to Spokane for installation of hand controls. In addition, I received a $1000 credit from the Ford Motor Company, which was applied to the cost of the hand control purchase and installation. I was delighted to discover, “A credit of at least $1000 is available from all the manufacturers as a courtesy to handicapped customers, when buying a new vehicle.”

 

Here's my "Rollator".

Eventually the cane wasn’t enough. I graduated to a walker.

By the spring of 2006, it became evident the cane was no longer sufficient to keep me upright due to my continuing decline. At that point, I asked my neurologist to write me a scrip for a rolling walker, which is commonly referred to as a Rollator (i.e. one of the popular brand names). When I visited the local medical supply store, I was actually outfitted with a “Rollator” made by Invacare. It was lightweight, had 5-inch wheels, dual brakes, and a fold-up seat. It was easy to fold up and throw in the back of the pickup. (As an interesting aside: Medicare will pay for a rolling Walker but won’t pay for the brakes! Go figure.)

 

I love Speck.

Not all the support I get comes from improvements to technology. For example, some of my best support turns out to be warm and furry. Speck is a “Healer” in more ways than one.

Once I started using my rolling walker, I soon discovered I could walk a little faster and with much better balance. This translated to far fewer falls. At that point, the psychological effects which resulted from admitting my disability had progressed to new level were overshadowed by the relief I felt at being able to stay upright.

 

All For A Good Bath

 

The master bathroom in our house is equipped with both a jetted bathtub and large shower. With my condition worse than ever the bathtub was obviously out. However, in order to enter the shower I had to step up and over a ledge about 6 inches high. By 2008, taking even a small step like this one was becoming more difficult, especially as there were no handholds to help me stabilize myself while entering, showering, or exiting. And the guest bathroom was worse! It had a standard set up which was even more difficult to navigate than the shower in the master.

I consider myself extremely fortunate my brother ran an accessibility construction business around that time. Naturally, I gave him a call to ask his advice. Within a week or two he assessed my particular situation, and through the wonders of e-mail presented me with several options for a bathroom overhaul.

 

Here's one end of my shower.

My brother helped me select a number of options like grab bars and a hand-held nozzle.

Not long after, he and his plumber partner showed up with everything needed to destroy and reconstruct the worst offender in the house—the guest bathroom tub/shower combination. The unit there was no match for my brother’s demolition prowess and his Super Sawzall. In fact, the entire overhaul process was so quick that by the end of the second day, I had a beautiful, accessible, and safe barrier-free shower unit. I was especially pleased to know that my brand new unit was made in the USA. If you’re interested, my shower came from Best Bath Systems of Boise, Idaho. Check them out. The company produces top quality items for the disabled in a variety of categories.

 

My brother deserves a lot of credit for helping me out.

A bench like this one can be a real life saver. The company who sells this has so many options.

The shower my brother installed for me is 60″ x 32″, has a fold up vinyl and stainless steel bench on one end, a showerhead with a flexible hose handheld option on the other end, stainless steel grab bars on two walls, a weighted shower curtain, and a barrier-free threshold which can be modified with a small ramp to allow wheelchair access if needed. Many other options are available.

 

In 2009, I once again called on my brother to seek a solution for a problem—namely, getting in and out of bed. After experiencing the thrill of rashly throwing off the bedcovers and crawling to my feet, my poor circulation and balance sent me sprawling. I’m sure my “accident” was a sight to behold. By the time I recognized my predicament I can only imagine my feet were dangling somewhere above me and I had my head stuck between the bed and the dresser! Something had to be done, and done quickly.

 

Help was not far behind. First, my loving husband rolled in the engine hoist from his shop. Then he engineered a carefully orchestrated extraction. Finally, we got my brother on the phone who recommended a product called the Super Pole. In all seriousness, my extraction required no special heavy lifting equipment, but Healthcraft Products, the company who sells the Super Pole, offer a number of very special attachments that make their product a real life saver. Check them out if you’re interested.

 

There are an amazing number of devices for certain disabilities.

This product and the add ons make getting in and out of bed much easier.

In my case, I added Healthcraft’s Super Bar and Trapeze to my order, which are both visible in the center of the pole pictured to the right. The entire unit requires no special hardware which makes installation a snap. There are two ceiling mounts available—one for a vaulted ceiling and the other one for a flat ceiling. The Super Bar in the center can be adjusted to rest at various positions around the pole. As an unintended benefit, I’ve found the trapeze attachment is useful for more than just getting out of bed, as I also use it to do some of my upper body strengthening exercises

 

On and Off Biking

 

Prior to 2010, I owned an “upright” Schwinn AirDyne exercise bicycle. I used it primarily in the colder months when going out for a daily dog walk around the orchard wasn’t feasible. The AirDyne was getting harder and harder to use. I needed a change. I called our friendly local bicycle shop, Full Circle Cycle, and the owner soon delivered an excellent recumbent stationary bike. Once again, technological advances allowed me to continue on in the face of adversity.

 

After this old beast, I researched scooters.

My old “Mule” was great for getting around the farm. And as long as Speck didn’t mind, I could take along a passenger.

During the summer of 2011 it became increasingly difficult for me to get into the utility vehicle I had driven about the farm for several years. As a consequence, I investigated power scooters, and decided on a heavy-duty Pride Odyssey (pictured below) which would be sturdy enough for me to travel on gravel, grass, and packed dirt. This vehicle soon proved its worth, as it allowed me to go down to our small personal orchard and pick fruit as it ripened.

 

I need to stay mobile, so I'm glad for this scooter.

Nowadays, this scooter gets me around. It’s much easier to get in and out of.

By July 2011, I no longer felt confident about loading and unloading the walker from the pickup bed, nor was I confident walking on concrete or pavement for more than a few feet at a time. Consequently, I stopped driving. My very patient husband assumed the grocery shopping duties, and on several occasions volunteered to be my chauffeur for medical appointments. I also purchased a manual wheelchair that made it easier to get into and out of buildings whenever we when out and about.

 

After nine months of total dependence, I was ready for a change. We live quite some distance from town, and I reasoned that it was unwise to be stuck at home by myself should my husband be unable or unavailable to assist me.

 

Once again, my brother stepped in with excellent advice regarding mobility equipment. In this case, he suggested I seek out a mobility van with a “Braun” conversion. Thanks to the convenience of the internet, I found a van with this conversion after contacting Absolute Mobility Center in Woodinville, Washington. Within 2 days we came to a deal, and then the owner of the company arranged to have the van delivered to our front door. This proved essential as traveling long distances is out of the question for me.

 

Once again my brother helped me out by recommending the "Braun" conversion.

I hit a button and the van “kneels”. Then I extend the ramp.

The Braun Company mobility conversion turns a “standard” van into a 21st century super mobility wonder. They do this by adding equipment and reconfiguring the seating to accommodate power chairs and scooters for disabled customers. Here is how mine operates:

 

The passenger sliding door opens as the entire van “kneels” (slowly drops about 4 inches closer to the parking surface). Once the lower height is obtained on the passenger side a ramp unfolds.

 

Speck watches as I drive out of the van.

I can drive my electric scooter up or down the ramp.

The kneeling function of the van allows the angle of the ramp to be less steep than it would be otherwise. That’s a real bonus for getting in and out.

 

Getting set to drive away.

My seat will swivel under power which makes getting in and out much easier.

Once the ramp is extended a power chair or scooter can go down or back up it without assistance. Or with sufficient strength or assistance you can push or roll just about any mobility device you can think of down from or up into the van.

 

Retracting the ramp is as simple as hitting a switch.

I retract the ramp when I’m ready to go.

Once onboard, the scooter is tied down with motorcycle straps to prevent it shifting position while in transit. The user then swivels the scooter seat to the left, and transfers to the van seat which has been left in a swivel position to make the seat switching process easier.

I love my new van.

Another nice feature is this auto door. We’re ready. Let’s go!

 

A series of toggle switches can be operated to return the seat to a face-forward position, and to move it closer to the steering wheel and controls. When the operator double clicks the switch on the key the ramps retract, the door closes, and the vehicle slowly rises to its normal elevation.

 

The hand controls are the same as I had on my pickup, but if an unimpaired driver wants to drive my van, they can use the pedals just as they would in any other vehicle.

 

 

It’s not always easy, but…

 

Sharing a funny moment.

Over the years I’ve had a lot of great support from those closest to me. A good laugh from time to time is critical.

Without doubt, I live in an amazing new world when it comes to technological advances that support those like me who have MS or other mobility impairing conditions. Clearly, our lives are better in many ways than for those who went before us. And as I think of all I’ve learned along the way, everything I have, and especially all those in my life like my husband, brother and others who love and support me, I count myself among the blessed. No whining here. I’m grateful!

 

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