My Sweet Husband

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My husband began to have difficulty walking in 2013 shortly after our son was born. He was a hard working and we just thought it was due to his job & possible pain from a bunion on his foot. He had his bunion removed in 2014. His walking problems continued to progress. After we welcomed a baby girl in 2015 we decided we need to focus on his medical issues. He began to fall daily and walking downhill, even the slightest downhill, was nearly impossible. He couldn't run anymore, hike and had trouble doing daily activities. He went to his primary Doctor and he began physical therapy and was referred to a Neurologist. For the next year he had MRI's done of his whole body, blood work, EMG and tried several drugs. All test results were normal. His neurologist ruled out MS and ALS. When he ran out of ideas we were referred to a Neuromuscular Doctor at an amazing neuro hospital. They continued with additional blood work, more medications and ruled out Parkinson's. Again all test results were normal. When they had no further test to do they diagnosis him with HSP. We are currently trying to find a medication to help him walk better and well as being able to function. He is also starting back up with physical therapy. Praying for the perfect medication;)

My husband is now 32 years old. He currently can walk but not far. Still falls daily. Unable to lift legs on his own to get dressed. He only has pain when he has exhausted himself. He is very spastic in his legs and weakness from mid abdomen down.

No family history that we know of. We will be doing genetic testing in the near future.