Hi, my name is Donna and I’m the wife of a MS patient, Lynn, who was diagnosed with MS in 2006. This is a second marriage for both of us and as with most second marriages it has had its challenges.
BEFORE WE MET
When Lynn and I first met, I had been divorced for a little over a year. I shared joint custody, with my ex, of our two children, a daughter who was around 9 and a son who was a little over six. My daughter has a medical condition that required a great deal of support and care. Therefore, a lot of my time was devoted to her. My son was into various sports and since we lived in the country, that meant a lot of time spent in the van going to and from sporting events. When my ex had the kids, I worked a second job as a home health nurse to make ends meet. I also was a girl scout leader, taught Sunday school, was in choir at my church, and attended any special events the children had. I was very busy and meeting someone was not likely to happen unless I met them at a sporting event, school, or church function. My single friends had tried the personal ads and persuaded me to do the same. I did, and that’s where I met Lynn.
I was drawn to Lynn’s ad because he spoke of how important family was to him and he shared that he was a Christian. We met at a mall so he could finish his Christmas shopping (on Dec. 23 which should have told me something about him). We discovered that his son and my son were only three months apart in age and that we had a lot in common. I found out he played guitar and had a beautiful tenor voice which swept me off my feet.
AND THEN WE MARRY
Lynn and I dated for several years before getting married. We both were scared to try again and both were reluctant to take on blending our families. Plus we were both very independent! We finally got up our courage and on October 11, 1997,
we tied the knot. As predicted our first few years were challenging. Our parenting styles were different and he was someone who never committed to a particular time to get anything done and I was the type that had to get it done the minute I said I would. Needless to say, that was difficult for us to adjust to. But we survived and adjusted through our commitment to each other.
During this time, my daughter continued to need a great deal of support. Often I spent more time with her than with Lynn and I found it a challenge to give both what they thought they needed from me.
One of the ways we worked at developing our relationship was through our church activities. Lynn and I both liked to sing. He was wonderful at it and I just liked to do it. My talent was more in the line of drama so when our church began a 17th Century Dinner Theater,
we both joined. We participated from the first rehearsal to the last performance. We both loved it and made many good friends. We also became involved in choir and started playing hand bells. A praise band started and Lynn joined first as a guitarist and later as drummer. I became involved in a support group, Discover Freedom, whose purpose was to provide encouragement and support to those fighting the challenges of addiction or who needed a group to help them find freedom from whatever struggles they were encountering. I also became part of a drama team. Three of us wrote scripts to illustrate sermons and we helped with the production and acting for most of our Christmas and Easter programs. Lynn and I were very busy.
THEN MS STRUCK
Things were going along very well. Then a few years after our marriage, Lynn started noticing his foot was dragging after he would run (he was devoted to exercise and tried hard to stay in shape and work out every day). It came and went so he didn’t pay much attention until his right leg started bothering him and would give out occasionally. I knew his father had died in his 40’s from complications of MS so I asked him if he thought that could be it. He said he had mentioned it to his doctor but he didn’t seem to think it was. He prescribed physical therapy and it did get better.
But it kept coming back and the physical therapy was not helping it improve. I kept mentioning MS and he kept denying that was it. One night I saw him testing the speed that he could wiggle this fingers on both hands. One hand was much slower than the other. That alarmed me. He still didn’t think it was anything but having a nursing background, I knew something neurological was wrong and I feared MS.
HE GETS DIAGNOSED
I was a little frustrated that his doctor wasn’t finding out what was wrong with him. Plus I was frustrated with Lynn too because if a doctor did ask him how he was, he always said, “If I was any better, I couldn’t stand myself.” I knew he was not sharing all his symptoms so I told him that from then on, I was going with him to all doctor’s appointment so I would know what was shared and what was said. His next appointment was with his cardiologist. He has mitral valve prolapse. His heart seemed fine, but his doctor asked me if I had any other concerns. I told him, “not about his heart but he’s got something wrong in his upper back.” He asked me who I wanted him to see, he got me the appointment I wanted and Lynn was seeing a neurosurgeon. I thought if it wasn’t MS it had to be somewhere in his spine and it wasn’t in his lower back, it had to at least be in his neck since his hands were involved. The neurosurgeon agreed with me and ordered a head and neck MRI.
Lynn and I went to the beach for our anniversary and on our way back, we got the news. Lynn had MS. Though I expected it, I still felt like I had been kicked in the stomach. He of course, felt worse. He had seen what MS did to his Dad and he didn’t want his son to see him like that. He cried outside unloading the car. I cried inside as I unpacked the bags. Then we cried together. So began the testing, the treatments, the years of shots, and the steady decline in his abilities.
The children have now grown up and are out on their own. Our daughter married a wonderful young man who took my place in caring for her (and does a fantastic job of it). Both boys are out on their own–struggling still–but doing okay. It’s unclear if he has now developed a progressive form of MS (secondary progressive) or if his many loses have been due to exacerbations, hospitalizations, or severe spasticity. Whatever the reason, since 2006 he has gone from being very healthy and able-bodied to being in a wheelchair and unable to do very much without assistance.
His steady decline in the last 12 months due to three hospitalizations has caused me to have to be home with him full-time. I’m very fortunate to be able to do my job remotely. Our three children are wonderful about helping out but for the most part, I’m a full-time wife, employee, and caregiver. I’m doing one or the other of those roles 24/7. I often am helping Lynn with his care as I simultaneously try to get “work” done. My schedule and Lynn’s needs are such that it is impossible to consider attending support groups for MS caregivers. My world is pretty much narrowed down to home now.
I expect many of you are in the same situation. Therefore, I offer you this opportunity to share with me as I share with you. Hopefully by doing so we both will get the support we need to make it through each day and each new challenge.
I hope to hear from you soon.
MS Caregiver Donna
In my blog, I sometimes mention medical options, give information about treatments or medications, or explain what I know about a condition, etc. This information is based on my limited knowledge of these topics and how they have applied to Lynn or me. Please do not consider this medical advise. Everyone’s situation is different and the only way to make sure you get what you need for your situation is to have your own healthcare provider evaluate you and develop a treatment plan just for you. Therefore, please keep in mind the opinions mentioned here are strictly my own and do not represent anyone other than myself and is not a substitute for your own doctor. Thanks