Home
IMG_2716

TC in Seattle

We leave Vancouver the next day and drive back to Seattle with the scooter in the trunk of the rental car. From Seattle, we begin the next leg of the trip, during which we will travel by Amtrak to Glacier National Park and spend a few days there.

TC drops me off at the Amtrak station in downtown Seattle with the scooter and bags, and he returns the rental car. When the train arrives, I drive the scooter up a metal ramp and onto the train without a problem. I drive down a hallway to a handicapped sleeping compartment.

scooter up close

Tooling around on the scooter

It’s my first overnight train trip, and while I don’t sleep well, I am able to walk back and forth to the dining car without a problem. I am happy to report that the train ride to Glacier goes off without a hitch — more than I can say for the final leg of the trip.

We have a fun weekend at the park, including a boat ride and an eight-hour, 50-mile bus tour of the entire park that includes a stop at the Continental Divide. The scenery is majestic, and the weather couldn’t be better – blue skies and sunshine with temperatures in the 60s and 70s during the day.

On the following day — our last full day at the park — we learn that our train to Chicago is running late; we were supposed to leave the park around 11 am, but now it looks like we won’t get out of here before 6:30 pm. We could miss our plane out of Chicago and get home a day late.

C&J at Glacier

TC and I tour Glacier National Park

I tool down the road on the scooter from the lodge at Glacier to the nearby Amtrak station with no problem. As I enter the station, the front wheel of the scooter shakes, and I see that a chunk of sidewalk beside the threshold is missing. As I leave by the same door, the scooter’s front tire turns sideways in the gap between the sidewalk and the threshold. The scooter falls to the right, taking me with it.

TC rights the scooter and I get back on it. Uninjured, I continue to the platform and wait for the train.

TO BE CONTINUED

Advertisements

When TC comes back from his conference that afternoon, I’m still sitting in the room with the scooter. I tell him what has happened, and he fixes the problem by removing the battery from the scooter and reseating it. He turns the key, and the scooter works perfectly.

We have dinner plans that evening in downtown Vancouver. I leave the scooter in the room, and we drive to the restaurant. Long story short, my cane and I enjoy a lovely meal with TC and two other conference goers. I don’t know why I didn’t take my scooter. I could have. But I seem to be getting cold feet (figuratively) about riding it.

The following evening, we are expected at a banquet on campus, which marks the end of the conference. TC tells me the location of the banquet is “a couple of blocks” away. He asks if I want to take the scooter. I decline, ensuring him wholeheartedly that I can easily walk that distance.

That was not the right decision. So why did I decline? Well, I’m still working through that. But in hindsight, I suspect it had something to do with accepting my limitations. Or maybe I don’t want others to see my limitations.

As we head out for dinner, I find it difficult to lift my right leg, despite the Walk Aid that helps me raise the front of my foot. My pace gets slower and slower as we approach our destination, and the “couple of blocks” seem longer and longer. By the time we reach our location, my pace has slowed considerably, and I trip with every two or three steps. I am quite fatigued when we finally reach the restaurant, and I wish I had taken the scooter. The return trip – from the restaurant to the room – is even worse. I walk even more slowly, tripping more often and becoming even more fatigued. After that trek, I finally admit to myself I need the scooter.

TO BE CONTINUED

UBC

Ponderosa Commons, University of British Columbia, Vancouver

In preparation for the trip , I borrowed a three-wheel mobility scooter from a friend. My traveling companion (TC) installed a new battery in the scooter the next day, and I went for a test run.

On the following Saturday morning, when we got to the airport, I rode the scooter from the curb to the counter, where we checked the scooter as baggage. (A hint from the scooter’s owner: When you check a scooter at the airport, keep the key with you. You don’t want the key to get lost in the baggage hold and have to put your vacation on pause while you wait for a baggage handler to find the key.)

When we arrived at the Seattle airport, the scooter was brought around to the baggage area, and I rode it out of the airport to a rental car. TC disassembled the scooter and put it in the trunk of the car — along with our suitcases — and we headed out for the Canadian border.

As I write this, we have maneuvered through Seattle in heavy traffic (on a Saturday afternoon –who knew?), crossed the border into Canada and arrived at Ponderosa Commons at the University of British Columbia in Vancouver.

On Monday morning, TC leaves for the day to attend a scientific conference, at which he will speak on Tuesday. The weather is sunny and mild, so I’m thinking of tooling around outside on the scooter until I find a pleasant, sunny spot, and then stopping to do a little reading.

I turn the scooter on, and it beeps loudly a whole bunch of times. I turn it off and try again, but it beeps again. When I press the handle to move the scooter forward, it won’t move an inch. According to the trouble-shooting guide, I am supposed to count the beeps and then refer to a chart to find out what the beeps mean. (Thanks to my friend for emailing that information to me before we left on our trip!)

But I don’t really want to deal with problem right now, so I decide to behave like any other self-respecting procrastinator and turn my attention to something else. Did I mention how pleasant it is this morning in Vancouver, where the temperature is 25 degrees lower than it is at home in Alabama?

TO BE CONTINUED

IMG_1882 (1)I was diagnosed with multiple sclerosis 18 years ago, but I’m still learning to be flexible when MS rears its ugly head and makes my life difficult. I have found that the most challenging parts of living with MS are being flexible and accepting my limitations.

Since my diagnosis, foot drop and muscle weakness have caused me to have problems with walking and balance.  I used to furniture-walk to help with my balance. Then, on the advice of my doctor, I began using a cane to keep from falling.

I began wearing an AFO (an ankle\foot brace) to help with foot drop, but the AFO caused additional muscle weakness in my foot and ankle. So, two years ago, I purchased a Walk Aide device and found that is better than an AFO at correcting foot drop. And it helps strengthen my muscles instead of making them weaker. (For those of you who don’t follow my blog regularly, a Walk Aide is functional electric simulator that is worn on the calf and improves the walking ability of people living with foot drop.)

However, I can no longer walk for long distances without fatigue, even with my cane and Walk Aide. The time has come to consider other accommodations.

In some instances I can make adjustments so I don’t have to walk long distances. For example, I can shop online instead of spending my energy walking around in big-box stores. But in other instances, I have had to limit or stop participating in activities I enjoy — activities such as traveling –and I don’t like that. I don’t want MS to control what I can or can’t do.

So once again, it’s time to be flexible in the face of MS and admit my limitations. I am planning a trip to Glacier National Park. My choices are clear: (1) don’t go, or (2) use a scooter so I can travel long distances without walking. I don’t like the first choice, so I have decided to use a scooter — for the first time. Now using a scooter may not seem like a big step to you, but it does to me. I don’t need to use a scooter every day, and I don’t intend to become dependent on a scooter, at least for now. But for this trip, it will be a necessity.

TO BE CONTINUED 

Gentle Reader,

I guess I’m finally getting serious about this gluten-free diet I have been on for two years. I had lunch at The Club in Birmingham, Ala., today, and I didn’t have an orange roll. I wasn’t even tempted!

Anyone familiar with the orange rolls at The Club will understand.

Not yet out of the woods

August 12, 2015

Gentle Readers,

Do you remember that medical-insurance problem I wrote about earlier this year? The one where I was told in January that I would have to pay $750 a month for a prescription for which I had previously paid only $40 a month?

Well, I thought the story had ended happily when I was told in early March that I would be paying $60 a month for the drug. So, I ordered the medication immediately and refilled it each month for the next four months.

Then, in July, I got the first bill. The amount due was $572.43 — for the first month’s supply. Math isn’t my long suit, but it didn’t take much to figure out that if the price stayed the same for the next four months,  I could end up paying more than $2,800 for five months of the medication, as opposed to the $300 I was expecting to pay.

Long story short, I once again contacted the HR Direct folks at Southern Company four weeks ago, and I expressed my concern about the price. I have touched base with them each week since then, but so far, the news has not been good.

Stay tuned.

MS hacks for hot weather

August 3, 2015

If you have MS and have lived through one summer in the Deep South, you deserve a major award, such as the leg lamp in “A Christmas Story.” This summer is my 17th down here since I was diagnosed — my 17th summer to experience the heat sensitivity associated with MS.

The year 2014 was the hottest on record, and this summer, the eastern part of the United States has been hotter than usual, once again. In July, temperatures stayed in the 90s – often the upper 90s, while heat-index values were in the 100s, and the humidity topped 90 percent in my neck of the woods. Although the area experienced milder temperatures and lower humidity this past weekend, temperatures are forecast to climb to 95 degrees today and tomorrow.

Heat sensitivity

In 1890, Dr. William Uhthoff first described the link between heat and MS. Known as Uhthoff ‘s syndrome, it occurs when exposure to heat or strenuous exercise temporarily worsen MS symptoms. As little as a one-degree elevation in body temperature can affect nerve conduction and cause a feeling of weakness, especially in the arms and legs.

Before MRIs and lumbar punctures were used to diagnose MS, patients suspected of having the disease were subjected to a hot bath test. If the patients experienced an increase in weakness or fatigue or any loss of vision when submerged in hot water, they were diagnosed with MS.

Healthline News cited a 2011 study in which Swedish researchers found that more than 70 percent of all MS patients experience some degree of heat sensitivity. According to the study’s authors, “The most striking result of this study is that heat sensitivity is significantly correlated with — and … appeared as an explaining factor for — the most incapacitating symptoms of MS: fatigue, concentration problems, and pain.”

According to the National MS Society, “It is important to remember that the heat generally produces only temporary worsening of symptoms. It does not cause more disease activity, such as demyelination or damage to the nerves themselves. The symptoms generally reverse quickly when the source of increased temperature is removed.”

Keep your cool

So how can you keep from overheating? The National MS Society recommends staying in an air-conditioned environment during periods of extreme heat and humidity. Consider using an oscillating fan while exercising indoors or in a cool pool (less than 85 degrees).

During outdoor activity, you can minimize overheating by using cooling products. When dampened, cooling products, such as neck wraps and bandanas, display unique cooling properties. You can also stay cool by wearing  a vest with insulated pockets that hold small ice packs.

You can order cooling equipment from the Multiple Sclerosis Association of America. If you have questions about the MSAA Cooling Program, you can call MSAA at 1-800-532-7667 or send an email to clientservices@mymsaa.org. You can also download an application for the cooling program at www.msaa.org.

Everyday Health suggests additional ways to manage heat intolerance from MS, such as:

  • Carrying a bottle of water with you throughout the day, and drinking frequently
  • Enjoying a cool treat such as chilled juice or frozen treats to keep your body temperature down.

Simple lifestyle changes can make a difference, too. Consider gardening or running errands in the early morning or late evening instead of during the heat of mid-day. Make sure you always have shade available, even if it means carrying an umbrella everywhere you go. Wear a lightweight, loose, breathe-able clothing, light colors and a hat. Duck into air conditioned buildings as often as you can.

If, despite your best efforts, you become overheated, remember to remove yourself from the heat source as quickly as possible. I have found that after being outside on a hot day, I can cool off by applying refrigerated aloe vera gel to my arms and legs. If you get extremely overheated, you might benefit from taking a cool shower or pouring a bottle of cold water on the top of your head.

Do you have other suggestions to help people with MS beat the heat? Send me your ideas in a comment, and I will include as many as I can with the next post.

 

 

Ashley's Life with Multiple Sclerosis

"Through every dark night, there is a brighter day." -Tupac

MS with a Southern accent

Hot enough for ya?

Pretty Feet, Pop Toe

It's just my point of view. Love it or hate it.

Aging Gracefully My Ass

A sincere blog about a donkey

Abby Has Issues

I have issues. So do you.

Stroppy Editor

Minding other people’s language. A lot.

sgraphos1028

This WordPress.com site is the bee's knees

The WordPress.com Blog

The latest news on WordPress.com and the WordPress community.

AnonMS Blogger

Ramblings from a "Possible MS" Candidate