Life in the time of COVID: Year Two

It has been about 18 months since the Coronavirus pandemic changed the world. I don’t know about you, but I am still trying to adjust to this “new normal.” I won’t go into the political aspects of the pandemic, except to comment that the virus has polarized this country in ways I have never seen during my 67 years on this planet.

Here in Alabama, it seems that the Delta variant of the virus is finally starting to slow down. That is, unless we have another wave because of football season. (Roll Tide!)

My husband and I have limited our trips outside the house when possible and have taken precautions — masking, hand-washing and social distancing — when leaving home during the past year and a half. We have not been infected with COVID, but we both have friends who haven’t been as fortunate.

We have made only a few trips to our beach house in south Alabama in the past year, mostly because the house was damaged by Hurricane Sally in September 2020. Most of that damage has been fixed, and we hope to have the rest of the work completed by Thanksgiving.

The beach house became a safe place for us to visit during the pandemic. We will continue to go there regularly, and we feel safe doing that as long as we take precautions when buying groceries and going out to dinner in the area. It gets us out of town, which we need.

My husband and I had to cancel two cruises we planned before the pandemic. But our favorite cruise line opened back up this summer, and just a couple of weeks ago, we went on a Greek Island cruise, during which we toured Athens and the islands of Rhodes and Mikonos.

We felt safe during the trip because we had both vaccinations earlier in the year and the booster a few weeks beforehand, and we had three required COVID tests during the trip — before, during and after the cruise. We took precautions during the trip, and everyone on the ship was vaccinated. I don’t think I realized how much I needed that time away until we returned home afterward.

I also have good news to report regarding my efforts to change to a different disease-modifying drug in the hope of improving my MS symptoms. If you read my blog, you may recall I reported a worsening of MS symptoms to my neurologist a year ago. My neurologist said my secondary progressive MS has become active, and she suggested I change my disease-modifying drug. She prescribed Ocrevus.

However, because of the pandemic and other delays, it has taken some time to get on the new drug. I am happy to report that my medical insurance plan has finally given prior approval for the drug, and I am scheduled for my first infusion next month.

:See photos below of our cruise to Greece:

Skyline of Athens from our hotel room

The Greek island of Santorini.

The Acropolis, Athens

The castle of the knights of Rhodes, which was captured by the Ottomans in the 16th Century.

Peter the Pelican, the official mascot of the Greek island of Mykonos

Tweaking my MS treatment plan is taking longer than I hoped it would

I was diagnosed with multiple sclerosis nearly 23 years ago, and I have recently noticed I am experiencing more than the usual problems with gait and balance. I discussed it with my neurologist — an MS specialist, and she recommended changing my disease-modifying drug from Aubagio, an immune-modifying medication, to Ocrevus, an immune suppressant. In addition, I am working with a physical therapist to improve my gait and balance as much as possible in the meantime.

The physical therapy is helping. I was using a walker earlier this year, but I am back to using a cane, with some additional support from my husband on bad days. I am working to improve my hip strength. My gait and balance are a little better, but I still feel wobbly some days. Having also been diagnosed with osteoporosis, I fear I might fall and break a bone.

In the meantime, my transition to Ocrevus is taking longer than I hoped. The first delay was related to the Covid pandemic. My neurologist recommended that I get my Covid vaccines at least a month before I started Ocrevus. So I got the Moderna vaccine in February and March, and I notified my doctor that I had done that.

The second delay happened in April, when I had the blood work required to change my disease-modifying drug to Ocrevus. The blood work showed that my immune system was low. My doctor prescribed monthly intravenous immunoglobulin infusions to strengthen my immune system before I started taking Ocrevus.

Here is where this story gets complicated. You see, I have medical insurance as a retiree benefit. The company I worked for changed my medical insurance plan to a different plan as of January 1st of this year. My medical insurance is now a Anthem Medicare plan from Blue Cross and Blue Shield. The plan requires prior approval for many medications, including the immunoglobulin infusions that my neurologist prescribed. My neurologist applied for prior approval for the immunoglobulin infusions, but the insurance company denied that approval in May, which caused a third delay. With the support of my neurologist, I called Anthem and explained my situation. Long story short, the denial was appealed and reversed, and I received approval for to begin monthly immunoglobulin infusion.

I received my first infusion in June and a second in July. I am scheduled for a third infusion this month. After that, I will have more blood work to determine if my immune system is strong enough to start on Ocrevus. So, the best-case scenario — if there are no further delays — is that I will have my first Ocrevus infusion in September. Fingers crossed.

Life in the time of Covid-19

A friend asked me yesterday if I was journaling during the Covid-19 crisis. That’s when I realized that I hadn’t posted to this blog since before the pandemic began.

Here’s a brief update, but I will warn you now that I don’t have much to report. My husband and I are fortunate that we have been able to work from home. But we live in the largest metropolitan area in the state, and, as you may expect, this area has the largest number of Covid cases in the state. We feel it’s important to self-isolate because we are both older and in the high-risk population. And MS puts me at even higher risk.

We have kept in touch as much as possible with friends and family. Trips that we planned to take during the pandemic have been cancelled or, in some cases, have already rescheduled for 2022. I still read a lot and meet about every month with my book club on Zoom, and my husband and I have completed some jigsaw puzzles to pass the time.

Charles and I have kept in touch with friends and family and have been fortunate that we haven’t gotten the virus (knock on wood). We continue to exercise, mostly at home. He exercises daily. I exercise when I feel we’ll enough. I have been able to meet virtually with my doctors, but my MS seems to be progressing. I have done some physical therapy to try to improve my ability to walk. I hope to get on a different disease-modifing drug in the next month or so.

My husband has received his Pfizer Covid vaccine, and I expect to get the Pfizer or Moderna vaccine soon. But we realize that the pandemic is far from over for all of us. We plan to continue wearing masks and social distancing until the CDC says it is safe to stop.

I hope that you make it through the pandemic and that some day soon we will emerge older and wiser from this dark time.

Learning to walk again

A diagnosis of multiple sclerosis 20 years ago has taken a lot from me, but the thing I miss the most — the thing I grieve the most — the thing I want back the most — is being able to walk  where I want and when I want, without a cane or other aid.

Don’t get me wrong. I can still walk a little. But I have used a cane for almost 10 years. My neurologist insisted I start using the cane because MS had made my legs weaker and had adversely affected my balance. But even with the cane, I can’t walk far. When I take trips or do other things that require walking long distances, I use a mobility scooter.

I was never much of a runner, even before my diagnosis. After my diagnosis, when running was no longer an option, I began dreaming I could run long distances — that I could run for miles. In my dreams, I felt like I was gliding effortlessly through space, floating on air, almost flying.

Last year, I found something that gives me hope that I can walk again without an aid. It’s an online fitness community called the MS Gym. This community provides help to counteract MS symptoms, train the brain to move better and get support and encouragement along the way.

With the help of the MS Gym, I am strengthening my core, improving my balance and minimizing my foot drop. My hip flexors are getting stronger, and I am learning to walk correctly again.

I have already swapped out my cane for trekking poles. And while it’s more difficult at first to walk with trekking poles, they are already helping me walk better.

I’ve been doing MS Gym exercises consistently for about two months now. In addition to exercise programs, the MS Gym offers motivational and informational podcasts to help you make the most of the program. Other members offer feedback, answer my questions and encourage me to keep exercising, even when I feel like giving up.

I admit I have made mistakes. First, I started doing an exercise program that was too advanced, and I couldn’t finish it. So, on the advice of someone who had been an MS Gym member for a long time, I changed to a less advanced program, and I started alternating every other day with an even more basic program to further strengthen my core and legs.

Second, I haven’t always paid enough attention to the instructions for the exercises, and I have done some of them incorrectly. That’s when the feedback from other members was so helpful. If you have a problem, you can ask other MS Gymers for help, and they will come to your rescue.

Third, I tried to exercise too much for too many days in a row. I didn’t listen to my body when it told me to stop and rest for a day before my next workout. But now I pay more attention to the way I feel, and it makes a big difference.

I’m sure I will make other mistakes as I continue to work out with the MS Gym. But I won’t quit.

My MS Gym membership has already shown me it’s possible to walk again without an aid. I may not be fast, but I can already feel my strength returning. And I’m just getting started.

To learn more about the MS Gym, you might want to check out http://www.themsgym.faqs.

 

 

 

Our accessible Mediterranean cruise vacation (Part 4)

This multi-part post describes a recent trip my husband, Charles, and I took earlier this year to celebrate our first wedding anniversary — a week-long Mediterranean cruise that included stops in three Italian ports. I have posted this information because I hope other people who have been diagnosed with MS — or who have a close connection to MS — will read it, and it will help make their life journey easier.

After I was diagnosed with MS in 1998, I began having problems with my balance, so my doctor recommended that I use a cane. I cannot walk long distances, even with a cane, so when we travel, I use a three-wheel mobility scooter. Because I use the scooter, we plan accessible vacations.

When we plan trips to Europe, we work with Sage Traveling. For this trip, the company provided accessible transportation to and from airports, suggested accessible hotels and provided knowledgeable tour guides.

Our third and final tour in Italy focused on Tuscany and included Pisa, Florence and the Fattoria San Michelle a Torri, a winery in the Tuscan countryside. Once again, my scooter came in handy, as we traveled long distances at all three locations.

We began the tour in Pisa, a city on the western coast in central Italy. Pisa straddles the Arno River. We were fortunate to see Pisa in the early morning before any other tourists arrived. We saw the Leaning Tower of Pisa, which is a freestanding bell tower affiliated with the Pisa Cathedral.

The Leaning Tower of Pisa

Our guide explained that the bell tower began to lean during its construction in the 12^th century. The tilt was caused by an inadequate foundation on ground too soft to properly support the structure’s weight. The tilt increased before the tower was completed in the 14^th century, but the tilt has been partially corrected in recent years.

The bell tower and cathedral are located in the city’s Cathedral Square, along with the Pisa Baptistery.

The Pisa Cathedral

The front of the cathedral, with its stone and marble arches and bronze doors.

Charles and our tour guide talk in front of the Pisa Baptistery.

Inside the baptistery is a highly decorated font and pulpit.

Later that morning, we went to Florence, also located on the Arno River. A cultural and historic city, Florence is the capital of Tuscany and the birthplace of the Renaissance Movement.

We began our tour of Florence at the Piazzale Michelangelo, which is located on a high hill overlooking Florence and offers the best views of the city.

Florence, as seen from the Piazzale Michelangelo.

A  bronze replica of the statue of David stands in the center of the Piazzale Michelangelo, while vendors and artists sell their works at the edge of the square.

We also went into the old city, which was crowded with tourists, and toured historic buildings and squares.

Possibly the most celebrated cathedral in the world, the Florence cathedral is known as the Duomo.

We enjoyed pasta for lunch in Florence and headed to the Tuscan countryside, where we toured the Fattoria San Michelle a Torri farm and winery, and tasted organic olive oils, Chianti and super Tuscan wines made from grapes raised onsite.

Two of the wines we tasted at the winery. 

We learned that Chianti is a traditional Italian red wine made with Sangiovese grapes, which are indigenous to Tuscany. Most Chianti wines are 100-percent Sangiovese grapes. Super Tuscan wines are red wine blends that, in addition to Sangiovese grapes, may include non-indigenous grapes such as Merlot, Cabernet Sauvignon and Syrah.

After our trip to the winery, we returned to the cruise ship. The ship docked in Nice, France, the next day, but it didn’t dock in a harbor, Those who chose to get off the ship were transferred to small boats called lighters, and the lighters took them to shore. It wasn’t safe to me to transfer to a lighter, so we spent another day onboard and docked at Barcelona the following morning. We spent the next night in Barcelona and boarded a flight home the day after that.

We thoroughly enjoyed our Mediterranean cruise vacation, including our three day-tours in Italy. Thanks to our knowledgeable tour guides from Sage Traveling, I was  able to get around easily and enjoy the sights on our tours of Barcelona and Italy.

Especially convenient were the handicapped-accessible vans that Sage provided. The vans had ramps that I could use to drive my scooter into and out of the vans as needed.

We will be sure to contact Sage again when we plan our next European vacation.

Our accessible Mediterranean cruise vacation (Part 3)

This multi-part post describes a recent trip my husband, Charles, and I took earlier this year to celebrate our first wedding anniversary — a week-long Mediterranean cruise that included stops in three Italian ports. I have posted this information because I hope other people who have been diagnosed with MS — or who have a close connection to MS — will read it, and it will help make their life journey easier.

I apologize for repeating as I introduce myself to readers who are new to my blog: After my MS diagnosis, I began having problems with balance and foot drop, so my doctor recommended that I use a cane. I cannot walk long distances, even with a cane, so  when we travel, I use a mobility scooter. Because I use the scooter, we plan accessible vacations.

When we plan trips to Europe, we work with Sage Traveling. For this trip, the company provided accessible transportation to and from airports, hotels and our cruise ship, as well as knowledgeable guides for tours along the way.

Charles and I at Rome’s Trevi Fountain. According to Wikipedia, an estimated 3,000 euros are thrown into the fountain each day.

Our second day in Italy included tours of Rome and the Vatican. Our driver dropped us off, along with our tour guide, in the middle of Rome. We saw many of Rome’s famous sights, including the Trevi Fountain, the Pantheon and the Spanish Steps.

Rome’s famous Spanish Steps, which were built in 1723 to connect the Trinità dei Monti church that was under the patronage of the king of France, above the steps, with the Spanish square below the steps.

My scooter came in handy, as the city is quite large. Our guide knew the city and its history well. Rome was crowded with tourists, but our guide found a quaint open-air café on a side street, where our lunch included another tasty pizza.

After lunch, our driver picked us up and took us to Vatican City. That afternoon, we saw the Vatican Museums and the Sistine Chapel.

An independent city-state surrounded by Rome, Vatican City is the smallest country in the world. It is the headquarters of the Roman Catholic Church, home to the pope and contains a trove of iconic art and architecture that includes Christian relics, tombs of popes and famous artworks.

Tourists wait in line for hours to see the 54 galleries of the Vatican Museums. One of the largest museums in the world, they display 20,000 works from a collection of 70,000 amassed by popes throughout the centuries.

 

Tourists look at a map in the Gallery of Geographical Maps, located in the Vatican Museums. The gallery is longer than a football field and contains 40 large maps of Italy. The maps were painted between 1580 and 1582.

Tourists are not allowed to talk or take photos in the Sistine Chapel, which is famous for the frescos that decorate its interior, specifically the Sistine chapel ceiling and the Last Judgment, which were painted by Michelangelo between 1508 and 1512. The fame of these paintings has drawn multitudes of visitors since the paintings were revealed 500 years ago.

We were unable to tour St. Peter’s Basilica that day. To do so, we would have had to exit the Vatican and enter again through a different handicapped entrance, something we didn’t have time for. After touring the museums and the Sistine Chapel, our driver picked us up and took us back to the cruise ship.

Next up: On our third and final stop in Italy, we see Pisa, Florence and the Tuscany countryside.

 

 

Our accessible Mediterranean cruise vacation (Part 2)

This multi-part post describes a recent trip my husband, Charles, and I took earlier this year to celebrate our first wedding anniversary — a week-long Mediterranean cruise that included stops in three Italian ports. I have posted this information because I hope other people who have been diagnosed with MS — or who have a close connection to MS — will read it, and it will help make their life journey easier.

After my MS diagnosis, I began having problems with balance and foot drop, so my doctor recommended that I use a cane. I cannot walk long distances, even with a cane, so  when we travel, I use a mobility scooter. Because I use the scooter, we plan accessible vacations.

When we plan trips to Europe, we work with Sage Traveling. For this trip, the company provided accessible transportation to and from airports, hotels and our cruise ship, as well as  knowledgable guides for tours along the way.

On our first day on the cruise ship, we found our handicapped-accessible cabin without a problem. We stood on our balcony and watched as Spain receded in the distance and the ship headed across the Mediterranean Sea toward Italy.

The next morning we stopped for our first tour in Italy — the picturesque Amalfi Coast and the famous Roman ruins of Pompeii. At the port in Naples, we met two gentlemen from Sage Traveling — our tour guide and driver. They loaded my scooter in their roomy van, and Charles and I climbed into the back seat.

More than 2 million tourists a year travel this serpentine road along the Amalfi Coast.

Because the road along the Amalfi Coast road is so narrow, drivers cannot use their rearview mirrors, which have to be pressed against the sides of the vehicles so a passing vehicle doesn’t tear off the mirrors. When a tour bus comes down the road, the traffic heading in the opposite director has to stop so the bus can get by.

But even with the steep terrain, our tour guide made sure I could get around on my scooter and see many sights.

As we traveled down the coast road, we saw lemon trees growing in terraced gardens. The Amalfi Coast is known for its production of limoncello liqueur, made from those lemons.

After touring the Limoncello Factory, Charles and I took in the view.

We also saw handmade pottery at a shop in Positano.  The Amalfi Coast is a major center for Italian ceramics, including tiles, tableware, vases and bowls.

The picturesque. village of Positano is tucked into the hills along the Amalfi Coast. John Steinbeck called it “a dream place that isn’t quite real when you are there and becomes beckoningly real after you have gone.”

Tourists climb the 62 broad steps leading to the Amalfi Cathedral in the Piazza Duomo. The cathedral is dedicated to the Apostle Saint Andrew, whose relics are kept there.

After we left the Amalfi Coast, we stopped for lunch at a small cafe, where we enjoyed a traditional margarita pizza with a crust baked in a wood-fired oven.

After lunch, we headed for the nearby ruins of the Roman city of Pompeii. When Mount Vesuvius erupted in 79 AD, Pompeii was buried under 13 to 20 feet of volcanic ash and pumice. Pompeii’s remains were discovered in 1599. Its ancient stone streets are straight and laid out in a grid. Our tour guide led us through the ruins on a surprisingly accessible path.

The well-preserved ruins of Pompeii include homes, shops and public areas such as a forum, amphitheater, temples and baths.

A tourist attraction for more than 250 years, Pompeii is said to be the most visited archeological site in the world. Tourists can spend several days exploring the site.

Next up: At our second stop in Italy, we see Rome and the Vatican.

 

 

 

Looking for a Christmas gift?

 

 

Check out my book, “Leeds,” on my website — janenewtonhenry.com. I have collaborated with Leeds native Pat hall to write “Leeds,” a history of the small city that straddles Jefferson, Shelby and St. Clair counties. The book was released by Arcadia Publishing on October 1, 2012. Leeds is the first history of Leeds, Alabama, to be published nationally. It includes 200 photographs that tell the story of the people of Leeds, from the first generation to the present one, and their many accomplishments that make the city a pleasant place to live. You can order a copy of the book on the website or amazon.com.

If friends or relatives on your Christmas list have ties to Leeds, Alabama, consider buying them a copy of Leeds, a history of this small Alabama city that straddles Jefferson, Shelby and St. Clair counties.

A resident of Leeds for 25 years, I collaborated with Leeds native and City Historian Pat Hall to write the book. The 127-page book includes 200 photographs that tell the story of the people of Leeds, from the first generation to the present one, and their many accomplishments that make the city a pleasant place to live. The first history of Leeds to be published nationally, the book was released by Arcadia Publishing on Oct. 1, 2012.

You can order a copy of Leeds on my website, www.janenewtonhenry.com, or on www.amazon.com.

 

Our accessible Mediterranean cruise vacation (Part 1)

If this is your first visit to my blog, you may want to know a little more about my situation before you continue reading. I was diagnosed with relapsing-remitting multiple sclerosis in 1998. And I live in the Deep South. That’s why my blog is named “MS with a Southern accent.” For the past seven years, I have been blogging about my life with MS. 

This multi-part post describes a recent trip my husband, Charles, and I took earlier this year to celebrate our first wedding anniversary. It was a week-long Mediterranean cruise that included day tours in Barcelona, Naples, Rome, Pisa and Florence. I have posted this information because I hope other people who have been diagnosed with MS, or who have a close connection to MS, will read it, and it will help make their life journey easier.

Charles and I tour Barcelona.

We planned our trip with help from Sage Traveling, a company that provides European travelers with guides for accessible tours. Sage was of great assistance to us last year when we went to Paris for our honeymoon, so we contacted them again.

For this trip, Sage provided accessible transportation to and from airports, hotels and our cruise ship, and provided knowledgable guides for tours along the way.

 

We flew to Barcelona and spent our first night there. On the following morning, we enjoyed an accessible tour of the city on our way to the port to board the cruise ship. Our tour guide picked us up in a van at our hotel. We took my mobility scooter, which I used during the tour because it is difficult for me to walk long distances. Thanks to our guide, we easily navigated the busy sidewalks and streets of Barcelona as he told us about the fabulous city.

The highlight of the tour was seeing Sagrada Familia — the Basilica and Church of the Holy Family. Designed by Catalan architect Antoni Gaudi, this Catholic church is said to have been inspired by nature and faith. I won’t try to describe this one-of-a-kind, as yet unfinished cathedral-sized church. Instead, I hope my photos will provide a glimpse of its magnificence.

 

Tourists line up to enter Sagrada Familia through the Nativity Facade, which faces East and symbolizes Christ’s birth.

Construction began in 1882. The project was less than one-quarter complete when Gaudi died at age 73 in 1926. Construction is expected to be completed by 2026.

A portion of the interior of Sagrada Familia, which shows tree-like columns inspired by nature and light streaming in through stained glass windows.

The construction of the church has taken well over a hundred years because it isn’t supported by governmental or official church sources. Initially, it was funded by patrons. Work being done now is paid for by the tickets people buy to tour the church and by private donations.

The passion facade of Sagrada Familia faces West and symbolizes the death of Christ. This photo shows some of the church’s spires, eight of which were built as of 2010. When all 18 spires are completed, Sagrada Familia will be the tallest church building in the world.

Next up: Our cruise ship stops in Italy, and we tour Naples, the Amalfi Coast and Pompeii.

 

 

 

 

Fooling around with foot drop

If you follow my blog, you might already know I wear a Walkaide device on my right leg to help with foot drop. I started wearing the device about four years ago.

Foot drop — which in my case is caused by the muscle weakness due to multiple sclerosis — is the inability to lift the front part of the foot. It causes my toes to drag when I walk. If I am not careful, I can easily trip over my toes and face-plant. 

As I have said in previous posts, the Walkaide helps me walk better with less effort and a more natural gait. But when I wear it, I have to make sure it’s in the right spot on my leg, or it won’t work. (I have small tattoos on my leg to indicate where to put the device so that it works correctly.) I visit my orthotist at least once a year to fine-tune the Walkaide and make sure it is working well.

About a month ago, I was having a problem with my Walkaide, so my physical therapist and orthotist are working on the problem. Until the Walkaide is fixed, I am wearing a new device my therapist recommended.

The SaeboStep is a lightweight foot-drop brace that pulls the front of my foot upward. It works in the same way that a brace does but is smaller than a conventional brace. It doesn’t go inside my shoe, and it’s adjustable.

As you can see in the photo, it consists of an ankle strap secured with velcro and a cord that hooks to your shoe.

The SaeboStep costs less than a Walkaide and is easy to use. However, it keeps my ankle at a 90-degree angle all of the time, so I worry that wearing it for long periods might reduce my ankle’s range of motion.

You can find out more about it at https://saebo.com/shop/saebostep/.

In my opinion, the Walkaide is a better option for long-term use, but the SaeboStep comes in handy when I can’t wear the Walkaide.