tag:blogger.com,1999:blog-6390441292756538494.post8224801017189163973..comments2024-03-27T01:10:45.967-04:00Comments on Living with Kennedy's Disease: An AFO that might be of interestBrucehttp://www.blogger.com/profile/17127100017051232292noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-6390441292756538494.post-57132071934669372792010-07-06T18:20:35.470-04:002010-07-06T18:20:35.470-04:00Louise, thanks for taking the time to comment. It...Louise, thanks for taking the time to comment. It is indeed wonderful to hear stories like this.Brucehttps://www.blogger.com/profile/08277245164759254126noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-20645917726835437362010-07-06T18:05:15.761-04:002010-07-06T18:05:15.761-04:00My brother Billy who has Kennedy's Disease got...My brother Billy who has Kennedy's Disease got these braces about 8 weeks ago. His wife and I have both called them "a miracle." I have seen my brother literally demonstrate incredible balance (and mobility) since obtaining these. He is quite willing to show anyone how improved his balance is by kicking his legs (one behind the other) while jokingly snapping his fingers. He is so proud of them and SO grateful for them. He absolutely could not do this without his braces; for those of you with KD, you will understand that he could not previously have done this. No matter how many times I've seen him proudly demonstrate this to folks who have yet to see him with his new braces, I still hold my breath afraid he will fall - with his braces, he does not have that fear. He says at the end of his day when he takes his braces off, his legs are extremely heavy - he realizes now they were that way all day and that's why he was always exhausted and vulnerable to falls. <br /><br />When the specialist suggested braces the first thing Billy told him was "absolutely not" - he could not possibly bear more weight on his weak legs; the doctor assured him they were extremely lightweight. Billy had originally gone to the podiatrist because his feet hurt so badly and were turning colors; the podiatrist referred him to this specialist. Billy was completely a non-believer that these braces could help, but he said the specialist was so positive they could, that he relented and ordered them. Billy says they are indeed light - a filled salt shaker weighs more. <br />Recently on vacation at a family beach house, for the first time Billy was able to walk down to the beach and watch his children play. Recent years past Billy always stayed behind because he could not get down and back up the beach path. <br /><br />Billy said the braces make bending (for stairs) or slopes difficult but the doctor assured him that with practice he would even be able to handle those. He said he has indeed already improved on those.<br /><br />Lastly, in my brother's estimation, the braces have turned the clock back for him for about 15 years.<br /><br />My brother doesn't have email nor know how to even use a computer :) but if anyone wants to get a message to him, or ask a question of him I'll be happy to be the conduit.Louise Noack Goforthnoreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-56791549640634871602010-07-01T16:21:19.032-04:002010-07-01T16:21:19.032-04:00Murray, thanks for sharing your experiences with a...Murray, thanks for sharing your experiences with all of us living with the disease. It is always good to hear of something that works.Brucehttps://www.blogger.com/profile/08277245164759254126noreply@blogger.comtag:blogger.com,1999:blog-6390441292756538494.post-55213424905913480402010-07-01T15:22:21.471-04:002010-07-01T15:22:21.471-04:00Thanks for publishing this Bruce, I know these wor...Thanks for publishing this Bruce, I know these work for me. - Murray Katy TXAnonymousnoreply@blogger.com