The Pokeberry Quilt

The Pokeberry Quilt

Saturday, March 15, 2008

JIM

The journey of where I have been.
This is a picture of my husband Jim before he became ill over 6 years ago, a long journey of doctors and specialists, neurologists, tests, MRI's until the third neurologist finally diagnosed him with a rare neuological disease called Stiff Man Syndrome. So rare it's one in a million, no cure, no real treatment, treat his symptoms which are constant muscle spasms and cramps, cramps that tighten his muscles from his lungs to his back to his legs. The tightening of his muscles pull him into a crippled position every moment of the day despite his medications and a pump that has been inserted into his abdomen and a catheter into his spine. This was a handsome, healthy man who worked, hiked 10 miles a day just to enjoy the wilderness of our beautiful Montana, he was living his dream. I watch him now battle the pain, the weakness, loss of his dream, and sometimes cry, scream and cry some more for what has been lost. The loss of his personality and joy for life. There are no answers, just more trials and errors to relieve his suffering. I am a nurse, I know what is ahead of us, I pray for hope, for his suffering to ease, to find the man I married. I work, I take a day at a time, I quilt when I can to ease the stress and sorrow, I laugh with a special group of quilting friends, I go on. This is where I am.

14 comments:

  1. You and your husband are in my prayers.

    Lori

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  2. my respect, Nancy to tell us about your husbands health issues and your situation. Even with Morbus Bechterew I can't imagine what you husband is dealing with. sending a big hug from Europe - Brigitte

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  3. I found your blog because I have a google alert that tells me whenever anything new is added to the web with the taglines "Stiffman Syndrome"...

    My mother has this disorder - and has had it since 2002.

    She is able to control it with the use of 6 or 7 diazepam a day.

    She has lost a lot of her mobility, and has suffered falls - my heart does go out to you.

    Does your husband do the ivig?

    YOu are not alone.......

    (HUGS)

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  4. I wish I had something to offer; words of wisdom or comfort; but I have nothing, except to let you know I will think of you often. Perhaps knowing people feel for you may be a little comfort. -Canadian Gail

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  5. I am so sorry. Thank you for letting us know --you will be in my prayers.

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  6. Nancy - when we marry we all vow 'in sickness and in health' with precious little regard to what it might mean, life can be so cruel - sending you lots of (((hugs))) Anne in the UK

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  7. I am sorry for the loss of your husband's health. I can't imagine what you go through each day. I am glad you have quilting and quilting friends to help you through the roughest of times and I am glad that your husband has you and isn't alone.

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  8. I'm so sorry for your situation and hope your husband has more good days than bad. Take care....

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  9. I'm glad you shared this and I will also be sending prayers.

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  10. What an amazing step of faith to share this on your blog. You probably do not want to be an inspiration but you have made an impact on my perspective and outlook. Thanks

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  11. Hi Nancy: I am so sorry. It is tough for him and tougher for you. Prayers and lots of positive energy are wafting to you from down South...

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  12. Hi,
    I am also a nurse and my husband was diagnosed with SMS last week, so I was very interested when I found your blog. We are just beginning the treatment with baclofen and he is feeling slightly better.

    I understand the helplessness of watching someone you love deteriorate and not being able to do anything about it. I appreciate your standing by your husband, knowing that your own sacrifices and sufferings are probably not often noticed.

    My prayers are with you. It is a tremendous comfort when I remember that God is doing a transforming work inside me through it all. God bless you and I will remember you if we find any effective treatment.

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  13. Dear Nancy, I wish I could speak with you in my native language. My thoughts and prayers are with you and with your husband!

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