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Living with a Young, Disabled Wife

My wife was diagnosed with a neurological disorder six years ago at age 32. The name of the disease is Friedreich’s Ataxia. Our lives will never be the same. Of course, wife is the one who has it a lot worse than I do. However, I explain things in this article from my perspective.

     I started dating my wife, Julie in 1998.  I was 26 and she was 27.  While she was not the most active person in the world, she was certainly healthy at the time.  In 2000, when I was in my final year of law school, Julie was misdiagnosed with MS, Multiple Sclerosis.  However, the symptoms of the disease subsided.  We married in 2001 and proceeded with a normal life into 2003. 

             Unfortunately, the symptoms came back in the summer of 2003.  Julie fell and sprained her ankle one night when out with friends.  Trouble walking persisted.  She went to the doctors and had a battery of tests.  Finally, months later, she was correctly diagnosed with Friedreich’s Ataxia.  This is a rare (1 in 50,000) neurological disorder which is genetic; both parents must be carriers.  The worst symptom of the disease is that Julie simply walks like a very old lady.  The joke between her and me is “Wally or Jack.”  If I am not with Julie, she must use her walker, “Wally”, to get around when she goes out in public.  I am sure I would be surprised to see a woman in her 30’s use a walker.  Unfortunately, walking with her reminds me of escorting my elderly grandmother around.  I am always relived when I walk her somewhere when we get to the point where we can plunk down. 

             Julie stayed at the job where she was at for another year or so before she was laid off.  She could not maintain a job after that.  After a long court battle, Julie was finally awarded Social Security disability.  Thank God that money is coming with the recession with the law office. 

             Julie’s reduced gait manifests itself when we have our three year old nephew, Caleb.  I am worried about her falling or getting tired so Julie’s mother and I do not let her watch Caleb for any length of time without “back up.”   Julie is stubborn, but we insist; it is not prudent to risk injury to her or Caleb.

             When Julie and I took our vacation last week, we went to Virginia Beach and the Outer Banks of North Carolina.  Freidreich’s , aka “Bastard Freddy” affected this as well.  When we were in Virginia Beach, Julie was too tired and too scared to leave the hotel.  She was worried that she was going to trip and fall in addition to being nervous about the tens of thousands of people there for the marathon.  (Ironic, no?  A marathoner is married to someone who can barely walk.)  I had to motivate her up just to go down to the hotel restaurant to eat lunch after the marathon.  She did it and I was proud of her.

             I know that there are couples with this disease that are worse off than we are.   Julie has her support groups and I have mine.  We cope.  In spite of the problems and me sometimes getting overprotective, we stay close after eight years of marriage.  Sickness or health.  That is what we said.  I would have preferred health, but I will take Julie and sickness over anyone else. 

 

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  1. Coach, Julie and you are awesome. You both are running your races and are piling the metals up. Both of you \”bring it\” everyday. We admire and love you both.

    Coach

  2. Well said Coach. Julie going 131 yards is as impressive as me going 13.1 miles. I am fortunate to have her and us each other. Julie’s father thanked for sticking with her. Uh, that is what we agreed to when we got married, “sickness and in health, richer or for poorer”

  3. Thank you for sharing this touching tale from your lives.

  4. Thank you stickman.

  5. You are an inspiration! Thank you!

  6. Thanks Jeanne!

  7. The good Lord does not give us more than we can handle. You and Julie hang in there and keep running the race of your lives.

    When HE Reigns, It Pours.

  8. Thank you Wayne. You are right.

  9. Thanks so much for writing this. I have Fred Ataxia too, I’m a bit farther with my symptoms than Julie is. I had the same anxiety Julie had leaving the hotel room. I told my doctor about it, he prescribed Lexapro, now I can live life again and not be scared. My family calls me handicappable cuz I do it all. I’m so much happier now.

  10. I also have FA just like like Julie and my husband is wonderful just like Julies. I am pretty sure he would rather have the health than this flippin ataxia. that is what i call it. i feel the same way like julie do not want to do things because of the fear of falling. but thanks to my husband and wonderful support group that i have i push myself because i do not want this to affect me to much. i want to work as much as possible.

  11. Everything happens for a reason, thats what I always say. Who knows what the future brings, but the two of you may be a bright point for someone who needs it. Bill is my boss, so I see everyday how he feels about Julie, and I’d say they were made to be in each others lives. They were made to be as one.

  12. I know this is an old post, but I too have Friedreich’s ataxia and I live near Virginia Beach, just wondering where you are from? I am 33 years old and a mother of 2.

  13. Just found this story about your brave wife. How is she doing now? I was googling Ataxia because I just found out that my 8 year old son has it and am reading everything I can find. Unfortunately, from what I read, his outlook doesn’t look good. P.S. I’m also from Virginia Beach.

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