Hi– wanted to write and share how Tom Clouse has impacted our lives in the most positive way. I first learned of Tom when I was visiting the Natl Ataxia Foundation website. I immediately emailed him and he immediately responded. He was kind enough to call me and spend as much time as I needed in trying to help me comprehend the SCA dx my 45 year-old husband had been given. In staying in contact with him, we discussed our meeting him someday and then he decided to “take his show on the road.” Much to our delight, he offered to come see us which he did in August 2009. In a way, it is hard to articulate what Tom has done for us. Having him work with my husband, encourage him and push him (and me) was the best thing we could have ever done. To my knowledge, there is no medical resource that could have given us what Tom did. Tom worked with us for 3 solid days; worked with my husband on technique, technique, technique. He gave him tip after tip about how to maximize his mobility, yet retain his safety. And as much as anything, Tom gave my husband permission to live again, to dream again and find ways to still participate in the hobbies/activities he had previously enjoyed before the SCA started to change things. The mind-set my husband now has can 100% be attributed to his working with Tom. I got my husband back!! Yes, we have made some modifications to life, but SCA or not, life sometimes demand modifications. Just 6 weeks prior to us working with Tom, one of the physical therapists working with my husband”fired him from therapy” because “he would never make progress and would need to use a rolling walker the rest of his life.” We thank God that he “got fired.” As a result of that, we “got fired up” and by the Grace of God, we found the perfect partner to help us stay fired up!
Tom’s being a physician is quite helpful, but his being a person with SCA and his having a burning passion to make a difference in the lives of others with SCA or other ataxia’s, is what makes him a Gift from God. Trust me, it will be the best gas money you will have ever spent!!
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