Penny Ehlinger was a young mother of four small children and couldn’t understand why she was always exhausted. While pregnant with her third child, Penny was continually dizzy and had trouble with her balance. Her doctor told her it was due to the pregnancy. However, after Penny’s daughter was born, the symptoms didn’t go away.
Penny’s husband, Jim, remembers one night, while they were walking across a parking lot, Penny’s leg just gave out. Fortunately, Jim was there to catch her. Penny also recalls a time when she walked across the street and the neighbor asked her why she was limping on her right leg. Penny just assumed it was weaker than her left leg and didn’t think any more about it. Denial is a powerful thing!
Life continued on for this busy mother and, three years later, Penny was pregnant with her fourth child. After she gave birth, while in the hospital, she had a major exacerbation from MS but no one realized it. Penny continued to be really sick for the next 3 ½ months. Then, one morning, Penny woke up and looked at the alarm clock. Everything was double; severely double! Penny couldn’t see well at all. She went to an ophthalmologist and he confirmed that she was having double vision but couldn’t find anything physically wrong. Penny was sent home with instructions that if it continued for more than a few days she should see a neurologist. Penny went home and the double vision didn’t get better; in fact, it got worse! Within a week Penny couldn’t use her right leg. “I couldn’t even manage to get out of bed and make it to the bathroom on my own,” she says.
Penny explains that the overwhelming anxiety she experienced at the time was off the charts. “I felt like I was going to come out of my own skin! I knew something was seriously wrong.” This was in 1978 so there was no Internet to explore. “We had a set of encyclopedias so I tried doing what I could to find an answer – any answer,” Penny explains. That was no easy feat for someone who was having vision problems. It took a lot of time and patience. Penny diagnosed herself and feared she had Multiple Sclerosis.
At the time, Penny had a wonderful Christian man as her obstetrician. “I remember one night after Jim spent the entire night awake and holding me that he called Dr. Straub,” she says. Dr. Straub immediately admitted Penny to the hospital and made arrangements for her newborn baby to stay with her in the room. Penny was breastfeeding and she refused to go without him. A neurologist examined Penny and discovered that the entire right side of Penny’s body was neurologically affected. The neurologist asked if she ever had to lift her leg up with her hands to get in the car. Penny said that indeed she did. He asked her if she thought that was odd. “I never really gave it a thought,” Penny recalls. “When you have four little kids you just keep keeping on.”
For months, things didn’t get any better. Penny would spend most days in bed, only to get up and use the bathroom. Penny’s mom would come in the morning to get the older kids off to school and take care of the younger two for the day. Grandma Millie would stay until Jim got home from his factory job in the evening to take over. Jim would make supper, help kids with homework, give baths and put the kids to bed. Penny and Jim also had countless neighbors and friends who supported the family as well with regular meals and carpooling. Penny’s neighbor Bev would check on her every morning and make sure beds were made, dishes were done and anything else Penny or the kids needed. Penny recalls those days: “I became very anxious and cried a lot! There was lots of crying. I needed someone to tell me what was wrong. I had four little kids. It was very scary to think that I could have this dreaded disease and I might not be able to take care of my own kids.”
During the course of those months lying in bed, the anxiety became unbearable. Penny couldn’t shake the extreme feeling of despair she was experiencing. As a once very active mother, all Penny could manage to do was have her baby lie next to her and nurse him when needed. On a good day, she might be able to help her oldest two sons with their spelling words. There weren’t many of those days though and she was scared. Very scared. “There were a lot of tears and prayers. I had so many questions that couldn’t be answered. I just wanted to raise my kids by myself and I didn’t know if I would be able to do that,” Penny explains. “My daily prayer was, please God – please let me raise my children!’”
At the time, almost 40 years ago, when someone was diagnosed with MS it was through a process of elimination. There were no MRIs. There was no definitive way for doctors to say, “You have MS.” It was a very lonely, lengthy and frightening process with a lot of ups and downs. Many years later Penny had MRIs so that she and her doctors would have a baseline to refer to for future attacks. “I remember when the doctor called with the results of my first MRI. I quipped, ‘Good news?! I don’t have MS!?’” As hopeful as she may have been that wasn’t the case. The scan showed lesions on her brain and confirmed the diagnosis from years earlier. Penny didn’t look at that scan or subsequent scans. “I don’t want to see them. It would just make me think that IT was going to get worse. It is what it is and seeing the scans won’t change that.”
MS affects each person differently. Each patient can have different symptoms and the severity of the same symptoms can vary greatly. One person could have few lesions and be very debilitated while the next person could have numerous lesions and not be affected much at all. It all depends on where the lesions are located and how much damage they have caused. When Penny was diagnosed, patients were advised not to do anything to add strain to their body. As a result, patients affected by MS were told not to exercise, not to get overheated and that the best course of action was to sit and rest.
Although the months after her diagnosis were difficult for Penny, the diagnosis was also taking a toll on her family. Jim recalls: “I would get up and get ready to go to work in the morning. Before I left I’d bring the baby to Penny so she could feed him. I’d go to work and come home and do whatever had to be done – laundry, make supper, do the dishes. I’d have the older two boys help with the dishes. I’d do homework with them and then give everyone baths and tuck them into bed. This went on for months. One day on the way home from work I thought, ‘We can’t keep doing this. I can’t keep doing this.’ ”
That night, when Jim got home, he did the unimaginable. In addition to the love and care he had shown for his wife and family over this entire time he went a step further. Jim dared to embark on something that was incredibly tough and something that he hoped would help the woman he loved so dearly. He made her move! Jim went into their bedroom and told Penny that she was getting out of bed. They were going for a walk. Penny told him that she couldn’t do it. Jim wasn’t quitting on her that easy. “That first day we got as far as the front step outside our front door. We repeated that for several days. Then one day we made it to the sidewalk and then the end of the driveway,” Jim recalls. Eventually, they made it to the mailbox at the end of their property and then one day to the end of their street. Jim took Penny on their daily stroll at least once a day and sometimes twice. Many months later, Penny began to take walks on her own with neighbors going with her.
“I remember one day I was walking with my neighbor, Bev, and it was about ten degrees out,” says Penny. “We were about a mile from home and I told her I couldn’t walk anymore. Bev grabbed me by the jacket and said, ‘What do you mean you can’t go? You have to go!’” All this activity was contrary to medical advice at the time, but Penny believes it is what saved her. For the next 8-10 years the illness continued in a constant up and down cycle. Penny went through a lot of physical therapy and steroid treatments. She had many exacerbations and, for some reason, the Fall of the year always seemed to be worse.
Penny’s continued to experience vision problems and terrible dizziness. Sometimes these symptoms would be so bad that she couldn’t even stand up. Penny also experienced weakness in her arms and legs. One time Penny had terrible burning around her waist and down her legs. Eventually the burning changed to numbness and she couldn’t feel anything when she touched her legs. Another time her doctor warned her that she could be experiencing irreversible damage to her optic nerve. It was at times like these that Penny would reluctantly agree to take medication. The MS drugs that exist today weren’t available yet and so typically that meant being treated with steroids. All the while, Penny kept walking.
Not only is MS hard on the patient but it can be difficult and devastating for the family as well. At one point Penny needed to wear a brace and use a cane on her walks. She recalls her brother telling her he saw her walking one day with her brace and it really made him angry. He pulled over down the road as he couldn’t control his tears. When Joshua (Penny’s youngest child.) was in a summer program for soccer Penny says she will never forget a heartbreaking incident. At the end of the program Josh started running towards the car where she was waiting and then suddenly stopped, turned around and went back to the coaches. Later, Penny asked him what he was doing and he said, “They told us to go get our parents so they could play with us. I’m sorry Mom, but I knew you couldn’t do that.” Penny recalls that moment with tears running down her cheeks. “We had many times like that. But that little boy understood it. For all of us that was our normal. I just wanted my children to have all the opportunities that other kids had and there were times when I felt like I couldn’t provide that for them.”
Once the kids were all in school, Penny decided to try and go back to work part time. She believes this helped her psychologically. “It made me feel like I was worth something again,” she explains. Eventually, Penny went back to work full time at a local college. “I didn’t know if I could work full time. There were some days when I literally had to crawl up the stairs to my office. But I saw this as an opportunity to help provide a college education for my children. It was actually pretty amazing how it worked out. My motivation was to get my children a college education but my husband was able to complete his degree as well. I suddenly realized that this was something I wanted too!” Penny’s motivation to get her children a college education eventually led her to fulfill her own dream of completing her degree as well.
Penny started an MS support group in her hometown of Dubuque. She found that many patients needed some motivation and a reminder that MS wasn’t a life sentence of doom and gloom. Many of the people that came to those first meetings were in wheelchairs and could hardly get across the room. Penny told them if all they could do was get up and walk across the room then they should do it. “Don’t do it just once a day, do it five times a day! Don’t ever stop moving. Do something – anything!” she told them. It wasn’t always easy going to those meetings because, seeing others more disabled, was a constant reminder of what the future might hold for her. Penny also found herself feeling guilty that she was fortunate enough to take those walks every day. But the support group was something she was committed to in order to help others.
Penny still has struggles today. Her balance is impaired but in spite of that she remains very active. Penny trips and falls. A lot! There have been many bruises and broken bones over the years including a broken hip. But, Penny always gets back up. She refuses to let MS keep her down. “Psychologically, you need to set goals for yourself. To have motivation, determination and being driven can make a difference. I think you just need to keep moving despite how you feel. You can’t give up!”
Jim agrees. “It can be hard on a marriage and a relationship. I knew people who divorced after a diagnosis of MS but that wasn’t an option for me. I couldn’t leave Penny sitting there and not help; not continue to love her.” Penny adds, “We had four kids and we had to figure it out. We had to figure out what worked for us. I hope it made our kids better people, more understanding and compassionate for those that have problems.”
Penny says the motivating factor for her each day is, “When I get up, especially on days when I feel really, really bad. I get up and I strap those braces on; those ugly braces. And I hit the road because I don’t want ‘IT’ to have control. I don’t want to have to say I can’t do it! That time every day is my time. It’s not IT’S time! It’s all mine to talk, walk and gawk with God!” Penny’s advice for others that find themselves living with MS is not to compare yourself to other patients. Even though there are similarities, every case is unique. “You can’t give up! Keep on moving on! My friend Charlotte, who has MS, gave me a bronze snail years ago. I cherish it dearly. She told me that, ‘the snail is slow, but it usually gets where it needs to go.’”
Jim can’t echo Penny’s sentiments enough. “It affects more than the person suffering from the disease. You need to step up to the plate and do what needs to be done. Do whatever your partner is capable of and keep the interest and activity going. For example, we never ever imagined we would be enjoying ballroom dancing at this point in our life but we wanted to learn how to do it for our daughter’s wedding. I know Penny’s limitations and we adapt as we need to.”
In the end sometimes it is love and motivation that can help you overcome the struggles in life. “Something Jim said to me many years after my diagnosis was, ‘If I had walked out in the beginning look at all that we would have missed. All the amazing, incredible, irreplaceable things with you and our kids’,” Penny shares lovingly as she looks at Jim. Yes, MS may have taken much from Penny but for her and her family much more was gained.
Be Great! Be Strong! Be Determined!
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