Grand Edits with Paula Conery and Mindy Thoreson-Sertich: Revising Life with Multiple Sclerosis

In honor of Multiple Sclerosis Awareness Month, I am honored to share the stories of these two warriors from my own community.

Paula and Mindy, your spirit of hope has inspired many. I count myself blessed to know you both. Thank you for sharing your journey with us. 


Paula’s Story

When Paula Conery went to the optometrist seeking relief for a case of optic neuritis in 1999, she had no idea she was on the path to uncovering a life-changing medical diagnosis. Paula was sent to a neurologist who ordered a spinal tap and an MRI that revealed multiple lesions indicative of multiple sclerosis.

“The neurologist came in and told me I had MS. For most people, it takes three documented attacks for a diagnosis. I was diagnosed just like that. I thought, ‘I don’t have MS! I play basketball. I run. I don’t have MS.’”

Paula and her husband Scott had two young, healthy children and careers they enjoyed. Paula was working at a chiropractic office and loved interacting with people every day.

“When my doctor told me I had progressive MS, he basically told me I was done working. He said ‘Staying healthy is your job now. MS is your job.’”

“The whole thing just floored me. I didn’t know anything about MS. No one in my family had it — I’d never known anyone who had it.

“I left there with this diagnosis, but that whole first year, even though I told people I had MS, I felt like every time I went to the doctor I was being told again for the first time. I’d go in thinking I pulled a muscle, and they’d be like, ‘No, Paula, you have MS.’ I was so sad that first year. It was horrible. I just cried. I went to an MS support group one time. Everyone came in in wheelchairs and everyone had the saddest stories. I left there in tears and decided that as long as I can fight, I will fight.”

Paula didn’t have to fight alone.

“In 2005, I had an attack that paralyzed me from the waist down. I was at Mayo Clinic for four months for plasmapheresis treatments. They didn’t think I’d walk again. My husband told me I’d be up and walking again, and sure enough, I was. The doctors would tell me it would take two weeks before I could do this or that, and Scott would have me doing it within days.

“When I came home in a wheelchair, he’d decorate it for me. He knew how much I loved basketball, so he’d push me outside and have me shoot hoops from my wheelchair. He never let me feel sorry for myself or lose my spirit.

“When I was first diagnosed, Dr. Johnson sat down with Scott and I and told me the divorce rate after diagnosis is sky high. Scott looked at him and said, ‘You don’t have to worry about us.’

“I wouldn’t be alive without Scott. He is my rock. Not all husbands are like that, but he has been with me through it all and reminds me of everything I have be happy about.”

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Scott and Paula

“Life is not over when you’re diagnosed with MS. Yes, it is horrible. I live with it every day. But it doesn’t have to consume you. I’m sure not ready to give up. I have the most supportive family and friends. They make sure I’m never alone. I can’t drive anymore, so they come to the house and sit with me. They built this house for me. My mother-in-law Susan has volunteered to be my chauffeur. She drives me to my appointments and takes me shopping –she is so good to me!”

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Paula with her sister-in-law Kelly
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Paula (right) enjoying a visit from Tracy and Debbie during her plasma exchange

“And my kids — they grew up with MS. Rachel was six and Cole was eight when they’d visit me at Mayo. They’d ride in the ambulance with me from the hospital to the plasma site, and the ambulance would go through the McDonald’s drive through for them! In some ways, I think my diagnosis made them grow up fast, and I feel bad about that at times, but I also think they’re more in tune and more compassionate with people than other young adults may be.”

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Daughter Rachel and Paula

 

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A visit from Paula’s daughter and friends: (From left) Sara, Sami, Paula, Rachel, and Mady

“I always was very honest with them. There were times I was close to not being here anymore. It was up and down for many years, and I think they handled it great. Today, they are truly my best friends. They will do anything to help. They will tell you that they would go through it a hundred times over. In the end, MS brought all of us closer and gave us perspective.

“Tomorrow might not come, so let’s enjoy today.”

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The Conery Family: Rachel, Cole, Scott and Paula

Mindy’s Story

In 1996, Mindy Thoreson-Sertich landed in bed for two weeks with unexplained dizziness and the inability to walk. Doctors attributed it to a case of vertigo.

“It was like I got off a bad amusement park ride,” she said. “It did go away, but then several months later I fell walking down a snowy hill. A few days later, my legs started going numb and I associated the numbness to the fall. I was at work, dealing with the numbness, when I lost control of my bladder. I finally went to the doctor. It just so happened that my son had chicken pox at the time and I had never had the pox as a child. They sent me to the emergency room thinking I could have a rare form of the virus that could cause death if not caught in time. They put me in quarantine and we all thought I was dying. My son was four years old at the time. I was a single full-time-working mom. By the time I got the MS diagnosis, I was just relieved not to be dying.”

“It was strange being diagnosed with MS because my father and brother have MD (muscular dystrophy) The two illnesses are unrelated, but I feel like my family is somehow neurologically defunct.”

“My MS was relapsing-remitting, where generally, you improve after an attack. You might only get back to 80-90%, but you will improve. About half of people with relapsing-remitting will move into secondary progressive, as I have.

“In 2007 into early 2008, I had several attacks, one of which affected my speech and swallowing. It’s really hard to call in sick to work when you sound like a drunk sailor. These attacks, however, led my neurologist, Dr. Johnson, to recommend the best treatment –a miracle drug called Tysabri. The drug was not without serious consequences so my husband and I thought hard about this course of treatment. In the end, Tysabri gave me nearly four years of peace. My fatigue disappeared, I was mentally clear and felt wonderful. When I was told I had developed antibodies to PML (a brain disease that kills), I had to stop Tysabri. I was devastated. Stopping the drug was also a precursor to one of my worst attacks.

“In January of 2013, I was hospitalized and placed in a nursing home. I had symptoms of an oncoming attack but didn’t associate it with MS at the time. For example, I had an annoying feeling of a zit in my ear and occasional eyeball pain. It wasn’t until months later when I lost my eye sight in my right eye, the mobility in my right side and my simple zit-like pain turned into a horrendous bout of trigeminal nerve pain, that I realized my body had been giving me previous warning signs.”

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A welcome hospital visit from Mindy’s son and her dog (2013)

“One of the most important things for people to understand is that it’s so hit or miss. My poor husband has a hard time sometimes because he saw me healthy during a period of 4-5 years where I had no attacks, then all of a sudden I had three major attacks right in a row. During one attack, Mark so wanted to help me, but I refused to go to the ER. The next morning I couldn’t walk. I called, ‘Mark, I can’t walk!’ I tried remaining calm and told him I was just going to hold my legs up and slide down the stairs on my bottom. I was laughing, and he was like ‘This is not funny!’ So we went to the ER and for my steroids to bring the inflammation down.”

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Mark and Mindy

For many people living with MS, the most difficult challenges are not physical, but mental and emotional.

“The worst part of the disease for me is the mental effects. When I was a kid, my dad went and got his master’s degree in social work, and that inspired me. I went back to get my masters’ degree in training and development while I was working at Wells Fargo, and when I was a thesis away from completion, the MS hit my brain. I ended up in the nursing home doing physical therapy and OT.

“When I was in the hospital, I started seeing things in German and hearing things in German. It did something to my memory that allowed me to recall songs that I had learned in German. At therapy, there was a picture of a woman holding a pie, and I told her in German that I saw my German teacher Frau Grimes holding a cherry pie!

“I cope well because I can laugh at myself. I crack myself up sometimes with what I say. Sometimes I have a trash mouth that just comes out of nowhere! Life with MS can be funny, but it can be very frustrating too. I’ve always been a voracious reader — I used to go to bed and read until four in the morning. Now my attention span is gone, and my vision interferes. It’s a chore, so I don’t do it as much anymore.

“I am an intelligent woman, but I forget things a lot these days. I’ll think I told my husband something, but I didn’t. I have to make a lot of reminders for myself so I don’t miss appointments.

“Still, I make a point to keep on living. I went 19 years before filing for disability, and I really want to go back to work. My background was at a bank, but I wouldn’t want to be a burden for someone in HR – if it was okay for me to be inconsistent, I would love to work again.

“For now, staying busy fills me up. I am a people person, so I kind of just fill my time — about five years ago when I was working at a bank, I had a customer who was mentally disabled. She was in the store, and she was crying, and I wanted to help her. We became friends. If I could keep her busy, I could be content. If I ever do go back to work, I hope it could be with the elderly or the disabled.”

Friends with MS

The sun shone brightly through the windows of the Conery home on the March afternoon of my interview with Paula and Mindy. The two had a short visit before my arrival, and Paula’s husband Scott had been home for lunch.

“When Scott was here,” Paula said. “I asked him if it was cold out, and he answered me with a smile that told me I had already asked him that.

“It was nice to just look at you,” Paula said to Mindy, “and know you understand.”

“MS brain,” Mindy replied, nodding her head. “Is it worse for you at night?”

“Absolutely,” said Paula. “Everything’s harder in the evening.”

“Do you ever have symptoms at night, and you are afraid to go to bed because you don’t know how you’ll wake up?” asked Mindy.

“Oh my – all the time,” said Paula. “That is me, all the time. I have a lesion on my diaphragm that brings function down to about 40% during the day, and even less when I lie down, so I’m on that ventilator every night. Sometimes I wonder what the morning will be like. When I first get up in the mornings, my legs always feel like jelly. It gets better after I get moving, but I am certain that if I didn’t work out every day, I’d be walking with crutches or a cane.”

“You gotta keep moving,” Mindy says. “It’s so important. It’s the best advice I could give someone with a new diagnosis.”

“When I came home in my wheelchair,” Paula said, “I’d push myself over in front of the kitchen sink and stand at the counter doing squats, just crying because I didn’t have my legs yet, but still pushing myself to do it.”

“It’s so scary when you’re first diagnosed.” she continues, “You don’t know what to expect, but you have to decide that you’re willing to fight for your own life. You have to evolve with the disease.”

“I like to reach out to people when I hear about a new diagnosis,” Mindy says, “knowing how terrifying it can be.”

“Yes,” Paula says, “at first I was mad at God. I’d ask ‘Why me?’ Now I say ‘Why not me?’ Maybe I have MS so I can help others — since I was diagnosed, over 20 people have leaned on me.”

“I don’t know that I’d want my life to be any different,” she continues. “I have MS, but I have all I need. I have all I’ve ever wanted.”

“I have MS,” she says, looking at Mindy, who joins her in completing the sentence, “but MS doesn’t have me.”


 

  Click here to learn more about MS at the National Multiple Sclerosis Society

Click here to support MS research, advocacy, and education


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❤ Stacy

13 thoughts on “Grand Edits with Paula Conery and Mindy Thoreson-Sertich: Revising Life with Multiple Sclerosis

  1. I know this treatment is not for everyone with MS, but, my cousin who had MS went to Dr Burt at Northwestern hospital in Chicago for stem cell treatment in 2014 and has kicked her MS to the curb. If anyone would like to talk with her, please contact me and I will send you her contact information. She is very happy to share her story.

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  2. Well I am sobbing. I am so glad I came here to read this. Both stories are beautifully told and these ladies are so very strong with such loving families to support them. My only experience with MS comes through my brother in-law. His father had it and lived with it for over 30 years. My sister has organized and hosted the MS Walk in her area for years. Thank you so much for sharing.

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    1. Oh, Christina, thank you for taking the time to read Paula and Mindy’s stories and for leaving this kind comment. These women have touched my heart and I’m glad their story has touched yours too!

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  3. I thank GOD every day when I get up and feel good, Going on 83 and still here—-what a blessing that is. I honor those two wonderful ladies , I am sure it must be hard for them but they still move on .Praying for them that GOD will give them all they need to carry on,Bless them LORD and hold them close to you .Thanking them for sharing their stories.

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    1. Yes, they are women of strength and gumption! I feel fortunate to have collaborated with them on this story. Thank you for reading and for the kind words. Blessings, Stacy

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  4. Powerful stories there, Stacy. It’s the mental strength that they have plus the support from loved ones are ever so important.
    True that – “tomorrow may not come, so let’s enjoy today”
    Thanks for sharing.

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  5. “I’d ask ‘Why me?’ Now I say ‘Why not me?’ Maybe I have MS so I can help others…”

    “I have MS, but MS doesn’t have me.”

    Ladies, the strength both of you display is so inspiring. I am so glad to have been introduced to you through the sharing of your stories. Thank you Stacy for sharing these empowering women with us!

    Like

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