Tag Archive | Multiple Sclerosis

A Respite Day

On the second and fourth Mondays, Ken enjoys a group called Harmony Club. This is a chance for him to be with other people, have a good lunch, and enjoy outside entertainment as well as a hot session of Bingo.

While he’s away, I usually do something with a friend. It’s not much. Perhaps a lunch together or a cup of coffee at a local cafe. If I’m too exhausted for that, I’ll just take a day alone and paint. At the very least, Ken’s group participation gives us a break from each other.

This is the sixth year we’ve been going through this MS Journey and we’ve both come to the conclusion that a day apart is a good thing. We both recharge our batteries doing something for ourselves. If you’re a caregiver for someone, please don’t neglect this important element. It’s not selfish to take time for yourself. And remember, the few hours spent apart is good for both parties.

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APPLE PIE AND STRUDEL GIRLS – BOOK 6 (CONTINUED)

Chapter 13

Sicily, Italy – September—Lately a short day in Josie’s life turned out to be twelve intensive hours, The staff of specialists in the Operating Room, including neurosurgeons, general surgeons, and orthopedic surgeons worked around the clock. The hospital at Salerno served over three hundred patients in a twenty-four hour period. Every day two hundred patients evacuated to North Africa for further treatment. Most patients went by train to the coast where they would be put on hospital ships for the trip to England. Only the most critical patients got evacuated by plane.

The battles produced patients with wounds of all kinds, but the latest disaster didn’t come from a bullet. The wet, tropical climate of Sicily promoted a high mosquito population, and the tiny enemy brought down soldiers almost as effectively as German artillery.

Before the war doctors prescribed quinine to treat malaria, but the Japanese controlled the quinine producing areas, so a new drug called atabrine became the substitute to treat the symptoms of high fevers, headaches, nausea, vomiting, and at the very worse, comas. Atabrine proved to be a good anti-malarial drug, and best of all, the drug showed no serious toxic effects. Like quinine, though, Atabrine didn’t cure malaria with one course of treatment, but if given in small doses, the clinical symptoms could be suppressed enough to keep soldiers on their feet. The only troublesome side effect was a yellowing of the skin while the patient took the drug. The skin color returned to normal after the completed course of treatment.

With the outbreak of malaria, the nurses hung mosquito netting over the cots  to combat the pesky carriers and to control the spread of the disease throughout the hospital. The netting looked like Spanish moss invaded the space, but this light weight fabric helped to keep patients safe from the infections. The unprotected doctors and nurses often succumbed to malaria which caused a larger problem. The over-worked medical staff stretched to the outer limits when even one nurse or doctor fell ill, and a busy hospital like the one in Salerno needed every available hand.

When she didn’t assist in surgery, Josie went from soldier to soldier and from tent to tent, making sure the  wounded men received the care they needed. As Josie made her rounds on a rainy, hot day, a soldier called out as she stood reviewing charts, “Josie? Am  I hallucinating?”

Josie stared at a big man with black curly hair waving at her. She studied his face.  His dark cow-like eyes and long eye lashes looked familiar.  “How do you know my name, soldier?”

“Don’t you recognize me?” He paused and gave her a wide teasing smile. “I must look really bad.”

All of a sudden Josie realized the identity of the man who called to her. She scurried to his bedside. “Oh my God! Mario from Autolite?”

“In the flesh!” Mario smiled a toothy grin.

“Oh my God!” She paused. “Why are you here?”

“Well, when the skeeters bite, a person can get something called malaria. I just made my way back from coma-land.”

“I’m so sorry you got such a bad case. We’ll get you on your feet soon; I promise.” Josie said with a warm smile.

“Don’t work too hard to get rid of me.” Mario teased. “The brass will just throw me back into the field. Just the sight of your pretty face makes me feel better. All of a sudden I want to take you dancing.”

Josie remembered the one night she danced with Mario when she celebrated Donna’s promotion. “Mario, I think you’re more Irish than Italian! You certainly kissed the Blarney stone somewhere along the line!”

“I only tell the truth, Josie my girl.” He grinned because he loved bantering with her.

She laughed. “You’re one in a million, that’s for sure.”

“Yes, ma’am. And don’t you forget it.” He paused and stared at her uniform collar. “Hey, when did you get your stars?”

“In North Africa. But don’t worry; I won’t make you salute me, private.”

“Will you come back and visit me again, miss first lieutenant?”

“So you can give me malaria?” Josie teased. “Not a chance.”

Mario dropped his eyes to the floor. “Have a heart. If I promise not to share my malaria will you come back? Then I can tell you how pretty you are and maybe get you to play a game of cribbage with me.” He raised his eyes to search her smiling face.

“I promise to put you on my over-full itinerary for the day, Mario. Okay?” She patted him on the hand and left. Only a dozen more tents to go.

Chapter 14

Montpelier, France-October—Four months had passed since Marta went to Montpelier. Through love and care Emma grew stronger and healthier. She remained frail, but her sunken cheeks filled out and a pink hue replaced the sickly yellow tone of her skin. Emma gained a few pounds, even though eating a full meal still proved impossible. At least her shoulder blades didn’t poke out through her dresses any more and her eyes even twinkled once in a while.

Besides making sure Emma got fresh food and enough rest, Marta took Emma for a short walk in the sunshine once a day. After existing in darkness for so many months, Emma often complained her eyes hurt in the bright light. Marta remedied that problem with a pair of sunglasses she found at the local dry goods store.

Marta took a waitressing job in a cafe few blocks from their apartment. Even though the rent was free, their food was not.  Pierre’s Resistance friends allowed them to stay in the apartment for the duration of the war. Emma was a hero in their eyes because sacrificed so much to protect so many others in the movement.

In her spare time, Marta wrote to a trusted neighbor in Paris, and asked her to ship their things to a P. O. Box in Montpelier. She also contacted her Paris landlord by letter and gave up her apartment. She didn’t want to do either chore because doing these things put an end to her happy times in Paris. She loved her job at the Louvre and the city’s unique ambiance, but she vowed she wouldn’t go back until every Nazi vacated Paris and went back to Germany. The peacefulness of the sleepy coastal town gave Marta a sense of safety she needed.

On her days off, Marta took Emma to the Mediterranean where they would sit and enjoy the rhythm of the jewel blue waves rolling onto the shore. They strolled hand-in-hand down the soft sand and let the salt air fill their lungs. Their new home in Montpelier sat nestled between the sea, vineyards, and the mountains, so no matter what direction they gazed, the scenery was breathtaking. As they got more familiar with their new surroundings, Marta and Emma ventured farther into town. A large square surrounded by stores offered everything they required. Emma’s favorite thing to do was to enjoy a cool drink while sitting on a bench under an old olive tree. She eyed villagers negotiating with the farmers at the market. Children played games of tag and statue maker under the  shade trees lining the broad boulevards. Living here made allowed her to think perhaps the war was over.

Marta went to church every morning before going to work. She thanked God for Emma’s safe return. She thanked the Blessed Virgin for the people who risked their lives to rescue her, and she prayed to St. Christopher for Emma’s safe passage back to France. Their reunion brought her happiness.

Careful planning by the Resistance brought them to this beautiful place where the terror and ugliness of the war remained hundreds of miles away.Since coming to Montpelier she and Emma relaxed back into a comfortable life, even though their new identities were a bit of an adjustment. Calling each other Emily and Mary and never speaking of their life in Paris seemed a small price to pay for a clean slate of safety.

Chapter 15

Salerno, Italy – October—Mario’s discharge from the hospital occurred two weeks after his first visit with Josie. Doctors got his malaria under control and deemed him fit for combat. The yellow hue in his skin had  almost disappeared, and he regained his strength and vigor a bit more everyday. But before Mario left the hospital, he wanted to say goodbye to Josie. She highlighted his days with her visits and humor, and Mario wanted to tell her how much he appreciated her attention when she was so overworked. Not only did she keep him company, she always double checked he received the proper treatment. Since their first encounter at the Autolite factory, Mario realized how special she was to him. He hoped to kiss her goodbye just in case the worst happened.

When it was time for Mario to leave, Josie was in surgery and couldn’t be disturbed, so instead of giving her a kiss, he left a note with one of the other nurses.

Later that evening, Josie retreated from the hospital sweaty and hungry. Her ankles swelled from the heat and humidity, and her back ached from standing so many hours without a break. On nights like this, she wondered if she ever would feel rested again. But when she thought about the boys losing limbs or needing serious operations to remove shrapnel from his brain or other vital organs, she told herself her little aches and fatigue didn’t compare.

One of her nurses approached her in the mess tent. “Josie. Some guy left a note for you.” She handed Josie a folded piece of paper.

“Who?” Josie said.

“He didn’t give me his name.” The nurse answered. “He just asked me to give you the note.”

Josie put the note in her pocket and finished her meal. She dragged herself back to her tent and collapsed on her cot. She fell asleep fully dressed.

At 0600 Josie woke for another stressful day. She sat up on her cot and then remembered the note.

My sweet Josie,

 I tried to say goodbye before I left, but no soap. As usual, you were working too hard to save another GI. God’s got a special place in mind for you. I hope you realize how special you are.

 Thank you for taking such good care of me. I’ll miss beating you at cribbage, but most of all I’ll miss your pretty face everyday. (And that’s no malarkey.)

 We’re headed north for more fun. As usual I don’t know where I’m going, but when the Army says “MARCH,” you march. I’m sad I missed kissing you goodbye. I really wanted to tell you what you mean to me in person, but I guess I’ll wait until we meet again.  

 When you close your beautiful eyes tonight, I hope you’ll dream of me. When you think of me, please say a prayer we will dance again.  

Love, Mario

Josie smiled before she cried. She read the letter again before she put it in her locker with her other valuables. She missed Mario already. His hospital stay brought them close. She enjoyed his gift to gab and the ability to make her laugh.

Before heading back to duty, she said a prayer for his safety and vowed to repeat the process every night when she went to bed. She secretly wanted to dance with that man for the rest of her life.

 

 

 

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A Quiet 4th of July

world_spinningKen’s Multiple Sclerosis is a puzzling disease. Everyday is a surprise. Neither of us know whether he’ll have a day free of fatigue or one that is full of it. We hope the different holidays throughout the year will end  up being good days, but as time goes on, we’ve learned MS doesn’t care if we have plans or not.

The Fourth of July this year was a particularly bad day for him. In fact, he fought to keep his eyes open–literally. Not that he was tired. The muscles in his eye lids refused to work, no matter how hard he tried to fight them.

Needless to say, the downtown parade was out. He made me go to lunch at a friend’s home because we are invited every year, and she was expecting us. By evening, he still wasn’t feeling well enough to watch the fireworks–not even on television.

The day was a wash for him. I found myself very angry at the cruelness of his disease because no matter what he feels or thinks, the disease calls the shots. I suppose any serious diseases has the say-so too, but I’m not living with them. I am living with this. I want to shout, “It’s unfair!”

But this thing we call the human condition is not fair. We both accept this fact, so when these days come along, he rests, and I keep quiet and read. It’s called coping. It’s called love.Blog 3-31 003

Who Misses Grocery Shopping?

grocery shoppingOur corner of the country is still in the grasp of this never-ending winter. Every night the weather man (who I am beginning to hate), forecasts colder than  normal temperatures and of course, snow. Yuck!

I’ve done my best to fight back with writing and painting, but honestly, the gray sights outside my window and the mounting bills of snow removal are getting to me. Enough already!

Ken and I have a fear of falling on the ice. I can’t pick him up. In fact, last week, I had to call 911 to get some help to pick him up off the floor after we struggled together for an hour. Having him fall outside would be tragic, and if I went down, we’d both be in hot soup.

So, winter has kept Ken and me in stasis. We work on our computers staring at each other across the room. He’s become a Spider Solitaire junkie as I entertain myself with reading, writing, and Candy Crush (as well as other FB games). To break this monotony we promised ourselves, on a good day we will leave these four walls at least once a week to enjoy a nice dinner/lunch together. . . even if we only go to Burger King.

Yesterday was our day.

Temperatures soared rose into the 20’s and off we went. It always amazes me a change of scenery has such a positive effect on both of us. In a restaurant we ponder over the menu to find that special dish that will send our taste buds into a happy place. We use our restaurant manners, putting napkins on our laps. We joke with our server. We take our time and make conversation about what is going  on around us. Best of all, when we are finished, there is nothing to clean up. We pay the check, put on our coats, and leave. Who would think such a simple outing would perk us up the way it does?

I share this snippet of our simple life as a reminder life can’t be taken for granted. Because life is in a constant state of flux, you never know what surprise waits for you around the corner. Ten years ago, Ken and I would meet for dinner after an exhausting work day because neither of us had the energy to go home and cook dinner. We would joke with a Greek owner of a family restaurant we were going to “let her cook” tonight. We satisfied our hunger and went home to “let it all hang out.” Going to a restaurant at this point in our lives was to fulfill a need; it was not a social event.

As Ken’s Multiple Sclerosis progresses, doing simple things have become exhausting for him. Taking a shower, getting dressed, and driving his wheel chair to the living room tires him. Having energy to go out and enjoy a meal has become rare.

As I watch him struggle everyday,  I wonder what will be left for us tomorrow and the next day. We have lost so many simple pleasures already. Even enjoying a hug and kiss has become difficult. Do you realize we used to enjoy grocery shopping together or going about our Saturday chores together? It strikes me funny I miss those simple activities. But I do.

If any of you learn anything from me by reading this blog, I hope you understand it is important to live in the present. Don’t take simple things like grocery shopping with your husband for granted. Make parties out of ridiculous things like “it’s Tuesday.”

Enjoy every minute even if you are in pain or feeling lonely. You’re present circumstances may be pleasant or miserable, but I assure you, they are temporary. Hopefully, the sun will come out for you tomorrow.  Find joy in every minute . . . no matter what.

The Best & Worst on the Same Day

Do you remember that famous quote, “It was the best of times; it was the worst of times.”?  Charles Dickens sure could turn a phrase, couldn’t  he? At the very least, he summed up my experience last week.

Last Wednesday, I confessed I celebrated a milestone birthday. I also confessed I’m a big kid about my birthday, and I pout when my friends and family ignore my big day. I also told you my friends are sweet enough to indulge me with great food, laughs and of course, presents. All of this happened last week—all week.

The worst of times concerns how Ken felt most of the week. He suffered debilitating fatigue from the damn MS. Most everyday he was unable to walk from the kitchen to the living room, which was heartbreaking because we live in a small 1100 square foot bungalow. We both planned to celebrate my birthday by enjoying lunch at Red Lobster, one of our favorite restaurants. But when July 31st rolled around, the poor guy was too weak to go.

He collapsed in the hallway after he struggled to get dressed, and I couldn’t help him get up. He was dead weight and even when my daughter Sarah tried to help us, we were unable to get him up off of the floor and onto the sofa. So, he lay in the hallway insisting Sarah, Joyce and I go off and leave him home.

The last thing I wanted to do was leave, I had been through this scenario several times before, and I knew in about thirty minutes he would regain enough strength to move to a more comfortable place, but I wanted to stay with him. He almost got angry with me when I said, “Let’s go another time.” He gave me a look that said, “Just go!”

As I drove to the restaurant, I wanted to turn around and go back home. I didn’t feel like celebrating anything without him, but I knew he’d be more upset if I went home. He would think his sickness once again put a damper on my good time. What he didn’t realize is, when he’s not able to enjoy the outing with me, I don’t have a good time either.

This birthday was the first time in almost twenty years we were apart. Up until recent years, Ken always made a special effort to make me feel special on my day, and now he can’t. He can’t drive to a store, shop for a gift, make dinner reservations, and take me out. His decline has made him dependent on others, and that’s a hard pill to swallow for both of us, but it was especially painful on my  birthday.

If you learn anything from me, take this away: Don’t take anything for granted. Be thankful for what you have and who loves you.  Appreciate people you love and tell them often how much they mean to you. Tell them you are a better person because they have wanted to be part of your life. Believe me when I say, the only sure thing in life is CHANGE, and I guarantee someday your traditions will fade, and you will end up apart from the person you love–and maybe it will be on your birthday.

MS Calls the Shots

webmd_rm_photo_of_nerve_damage

This is your body with Multiple Sclerosis.

In Wisconsin we wait for warm weather all year. When it comes, we want to be outside enjoying the sun and breezy days, but unfortunately this is the time of year Ken and I find ourselves indoors keeping cool in the air conditioning.

Why? Not by choice that’s for sure! The hot weather of July takes the sap out of Ken. This behavior is typical for an MS patient who generally has trouble with fatigue, but when the heat comes along he or she becomes a puddle. Here’s what I’m talking about.

One day last week, Ken rose feeling energetic. He made himself breakfast, walked into the living room with the aid of his walker, and within a few minutes his eyes glassed over, and he collapsed in his chair. The next thing I knew, he was sound asleep for four hours. He slept so long, I began to worry there was really something more wrong than just being weary.

This is what life is like when you have MS or when you live with someone who does. Everyday is an adventure with this disease. Things can change from good to bad in a matter of minutes or a matter of days. Sometimes things stay status quo for months. The real challenge is to try to be ready for the next change. Through this uncertain journey, Ken and I have become pretty good at waiting for change.

Living with a mystery everyday is not exciting. Sometimes I just want to throw a tantrum and scream, “This isn’t fair!”  I want to spend my summers with my love like we used to do. . . enjoying art fairs, family picnics, and an occasional day walking around at the zoo.  I’m not asking for much, only a little normalcy in warm weather.

It’s More Than a Lift Chair

handsI’ve talked about being a caretaker for my husband Ken who suffers from Multiple Sclerosis. In fact, I’ve talked about it so much, I’ve actually learned how to spell Sclerosis and had to create a category for our experiences. And maybe someday, this will be a springboard for a book. I’ve talked about how this horrible disease comes like a thief in the night to take away the man I love.

Because of this disease, our relationship has changed. And I hate it, but my changed role is necessary. I’m a writer by profession and religion, but I’m a caretaker now 24/7. As such, I’ve turned to the Aging and Disability Resource Center (ADRC) in our area for some necessary help.

Through that organization, I met a wonderful woman named Marilyn. She calls once a week just to check in on ME. I guess caretakers get lost in the shuffle, and it is her quest to connect with me and help connect me with resources that will benefit both Ken and me.

Yesterday, Marilyn called and said there was a lift chair available, and all I had to do was pick  it up. I was thrilled it was offered to us because Ken does have problems getting up and down out of a chair. So, this chair would aid him in his everyday challenges.

lift chair

When I excitedly told him about the chair, he said, “Where are we going to put it?” You see, he doesn’t want to part with the platform rocker he sits in now, and I think he saw this lift chair as another reminder he needs assistance.

I know he will probably love this chair, so I said, “Maybe Ernie will sit by you more often if you have a different chair.” (Our pug Ernie doesn’t like the rocker because he loses his balance when he attempts to sit on Ken’s lap.) Ken thought about it for a second and said, “Okay.”

So, now the next challenge was to get the chair from its present location to our home. Enter friends. I phoned one of my male friends who has a truck, asked whether he could help me and with no hesitation, Dave said, “Sure, I can help you, Barb. When do you want to do it?” So bright and early on Saturday we will go together to get the chair.

The moral to this story? Let people around you help. I’m not big on support groups, but connecting with people who can actually help is so important. Friends and family see the struggles and most of the time they feel helpless to ease your load. So, when an opportunity comes along when one of them can help, ask them. Life truly does take a village.