Lynn’s Story

Lynn

Lynn’s story actually begins when he was a young teen.  His father, who was a carpenter, began to experience difficulty walking.  He was diagnosed with multiple sclerosis and both his life and the life of his family changed.  His diagnosis was at a time that no treatments were available for MS.  Lynn remembers him declining steadily until by the time Lynn was a young man, his father was bedridden and died from complications.  Lynn saw him struggle with depression and the frustration of having to have others do everything for him so Lynn was determined to stay healthy and do what he could to prevent the same from happening to him.

Lynn followed in his father’s footsteps and became a carpenter himself.  As a carpenter he was exposed to lots of glues, paints, solvents, arsenic, and other harsh chemicals which may have been harmful and contributed to his condition.  He often worked outside so he got lots of Vitamin D which was good and may have helped.  He loved to cook so he ate well. He avoided preservatives, ate fresh foods when he could, and kept up with “healthy living through food” trends.  He also worked out.  He was slim and physically fit and never got sick.

FIRST SYMPTOMS OF MS

When I met Lynn, he was the picture of health and had a great mental outlook.  Then the problem began with his foot dragging when he ran.  It would return to normal after he rested and did not always occur, but it happened often enough for him to notice it. Then he developed a limp.  His doctor thought it was sciatica.  He saw a chiropractor and then a physical therapist.  One theory was he was sitting on his billfold and that was irritating the nerve so he changed how he carried his money.  Nothing worked. 

He also started having some trouble passing his urine, but he was in his 30’s so they thought that maybe his prostate was beginning to act up.  He was given something to stop bladder spasms and to reduce the size of his prostate. Then his right hand wasn’t able to move as fast as his left.  Again, not all the time but enough that he would check to see how it was functioning every now and again.  He could not tolerate heat, he was getting tired, and he just wasn’t feeling well.

TESTING TO CONFIRM DIAGNOSIS

So one thing lead to another and he was diagnosed with MS in 2006.  The head MRI the neurosurgeon ordered (see “Our story”) showed lesions.  The neurosurgeon sent him to a neurologist who did blood work and a lumbar puncture.  The lumbar puncture was difficult.  His lower spine is curved apparently and they had a hard time getting in.  He was stuck three times and at least one of the areas leaked afterwards. He had the mother-load of a headache for two weeks after that. He would go to work and lie on the floor; it hurt so bad. Finally we went to the emergency department and he got an IV of caffeine and some pain medicine which helped.

When the diagnosis was confirmed, he was referred to a specialist in MS and entered a study.  MS drugs are very expensive but because he is in a study, he gets them for free which has been a blessing.  Unfortunately the drugs haven’t kept the condition from progressing so now he’s in a wheelchair.  He does not have the use of either of his legs.  He can move them slightly but not enough to use them or move them any great distance; therefore, I have to position his legs whenever he needs them moved.  His right hand have very limited function.  He has bladder spasms and has to be catheterized to pass his urine.  He has some limited lung capacity and weak abdominal muscles.  He has also developed hypothyroidism.  We’ve learned that one autoimmune disease often leads to another.  Isn’t that fun?

A YEAR OF CHANGE

The year we found out Lynn had MS was one full of challenges.  First Lynn heard he had MS on our way back from an anniversary trip to the beach.  A few days later a hurricane came by causing us to lose power for several days, then we got power back but a tornado came by sending a tree through the windows of our car.  When I called Lynn to tell him about the car being totaled, he told me he was waiting to hear if he had a job anymore.  Later that day, he got the word that the entire department was being outsourced.  He had about eight months before they closed the shop to find a new job.

BUILDING OUR HOME?

A few years after we were married, we bought land and Lynn drafted plans for a new house.  He wanted to build one himself for us instead of our living in the house that my first husband and I bought.  He had built his log cabin and he wanted to build a timber frame house for us. As he was finishing the basement, however; he had become so weak that he was unable to do the work himself.  Whenever he went to the land, I had to go with him to mix the mortar so, even then, I was beginning the role of caregiver.

Can you imagine?  In the space of two years, this man who was the supervisor of a fabrication shop, who could build anything, who was able to draw his own plans for a house, and who had the skill and knowledge to build that house himself, was out of work knowing that he no longer had the ability to use his hands or the strength to lift the tools to build or to cut the timbers or to hold the stone in place while it dried.  He wanted to work.  He wanted to stay active so he started a drafting business which lasted six months… until the economy caused people to stop building.

FINDING A NEW CAREER

During that time he also had to stop driving because his spasticity was too extreme for him to apply brakes.  He had to stop playing drums because he could not hold the sticks.  He had so much talent but there was so little he had the ability to still do.  His son came up with an idea for him to try writing.  He could type, not fast, but he could use one hand pretty well.  So he gave it a try, and he enjoyed it. He got the idea for a book and in four months, he had written a novel.  I helped edit it and he submitted it for publication.  They took it!  His first novel was published and released in April 2009.  Rising Tide.  

Rising Tide available from internet bookstores

He has two others he has also written but which we have not edited yet because he is trying to market his first one (the publishing company he used was great with helping with the publication part but they do not do much marketing).  He needs an agent but hasn’t found one yet (do you know of one?).  Though it’s not well-known, those who read it seem to really like it a lot.  I hope his marketing efforts work and it gets better known soon because it really allows him to use his creativity and express some of that talent bottled up inside.

So the challenges of MS lead him to have to make “lemonade out of lemons.”  He’s now has found a new career, writing, which he’s very good at and really enjoys.  Our house is on hold until the seller’s market improves since we will now have to pay someone to build the home he started.  I work from home. We attend church by internet.  There have been many changes but we’re adapting and adjusting and we still feel blessed from all the love our friends and families provide and the gifts God gives us on a regular basis.

3 Responses to Lynn’s Story

  1. Trish says:

    It is hard to look at the good thing you have in your life, when you live with someone who is disabled by MS. My life is quite different than yours. My husband and I have no children. All of our friends, and friends of over 20 years moved and/or died. We have to rely on each other and I have a chronic disease too . I am the care giver but have had an invisible disability for over 2o years.
    However, we do have problems besides health issues.

    My husband, J. has MS. It is pretty stable and is probably secondary progressive. He is able to work.. but he is experiencing cognitive decline… it is not nearly as bad as some people. When I am depressed about our situation I remember that there are always people who are sicker than you are. When I am having problems with my feet, knees or what ever when I wake up in the morning I count the body parts that still work pretty well. I try not to compare myself or my life to the other people I know… that look like they have a wonderful life. Some people are very private and don’ t acknowledge their problems to many people.

    mctripat

    • Your words are so true. I often think of others who don’t have it nearly as good as we do and realize how very blessed we are. We have so much and though we struggle, our life is really good. Thank you for reminding me of that and best wishes to you and your husband.

  2. babythornmay says:

    My husband was diagnosed a year ago at 39. With a 3 year old and a newborn I have keep my mind busy as to not think of his future. I am just now releasing the toll that ms will take on him. I am having trouble with the full gravity of the disease, mainly the unknown. Is this a flare up or relapse, managing his stress, telling our children, will he fulfill his dreams he had, etc. I am glad I found your blog. To know despite the completely known path ms will play that I’m not alone in what’s so scary. I love that your husband found writing. I hope to be as strong of a caregiver as you are. Thank you.

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