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28 years with AMN

I was diagnosed with AMN after my left kidney was removed when I was repairing HVAC. I was part of the Lorenzo's Oil study for about four years. I do not think it helped. After returning to college to get my BSEE I relocated from Il. to AZ. I was able to walk with a cane until 1994 and then I found the wheelchair easier. Over the last twenty years my legs gave got so thin, I can no longer stand. If I had known my legs would get so weak so fast, I would have tried to walk as long as I could. The spastic bladder is a problem; Botox helps. To this day I hit the gym three times per week and stay as active as I can.

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I Just thought of you the other day when I saw Grimaldi Pizza Sign in the airport! I reminisced about Pizza at Nello's with you and your sweetheart and my sweet Jonathan.

The Spastic Bladder is one of my biggest frustrations as of late...legs a little struggle from time to time and trouble with balance but mostly pain/ tightness/ spasms in low back and tightening of muscles around my hips (feel like I'm stuck in a vice) It seems as though when I get use to a symptom and think ok I can deal and then the next bump in the road comes...and then re-adjust again.

I am glad you're still at it.

Take Care of Yourself,



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