tag:blogger.com,1999:blog-401303964563152307.post6547367597149778894..comments2024-03-17T12:02:12.410-04:00Comments on Love That Max : 10 things I didn't know about cerebral palsy—until I had a kid with cerebral palsyEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-401303964563152307.post-22676467184596686402014-10-26T14:56:13.584-04:002014-10-26T14:56:13.584-04:00I teach at a school in Ghana for kids with special...I teach at a school in Ghana for kids with special needs. Four of my students have CP, and I just found your blog tonight. What a great resource! Thank you for sharing. Sounds like you're lucky to have Max, and Max is lucky to have you! Hannah Carlonihttps://www.blogger.com/profile/08868835260782080728noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-43363843074842346832014-03-31T11:44:49.306-04:002014-03-31T11:44:49.306-04:00What a great article! There are so many misconcept...What a great article! There are so many misconceptions around CP and people still know so little about it. Such posts and sharing them across people is definitely a very helpful step forward. Chatoveracuppahttps://www.blogger.com/profile/02704629715215598746noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-33523842644060518022014-03-26T13:21:00.295-04:002014-03-26T13:21:00.295-04:00Hi, Bernadette. I've heard of it, and I know o...Hi, Bernadette. I've heard of it, and I know of a lot of kids with CP who have been helped by it. Max's leg muscles aren't stiff enough for it. I wish there were an arm version—that's where so much of his tightness lies. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-48740560610172648522014-03-26T13:19:54.213-04:002014-03-26T13:19:54.213-04:00Great post, Kammy! Great post, Kammy! Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-49033860303623544442014-03-26T13:02:17.530-04:002014-03-26T13:02:17.530-04:00You forgot 2, spastic triplegia which affects 3 li...You forgot 2, spastic triplegia which affects 3 limbs and spastic pentaplegia which affects the whole body. But it is a great awareness post. My daughter has spastic monoplegia and until now I thought that was the only form of spastic CP. Taranoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-57002368425592254712014-03-26T07:29:01.508-04:002014-03-26T07:29:01.508-04:00Thanks for this post. .I was wondering if you have...Thanks for this post. .I was wondering if you have heard of Selective Dorsal Rhizotomy? My son has spastic diplegia. He had SDR 2 years ago and is doing amazing. . SDR permanently removes the spasticity in the legs. It is another treatment to help improve movement and make life easier. Anonymoushttps://www.blogger.com/profile/09754343053269315196noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74065738184138098122014-03-26T03:29:37.507-04:002014-03-26T03:29:37.507-04:00Thanks for these important clarifications/adds, Ca...Thanks for these important clarifications/adds, Cara. I do understand not wanting a cure and have mused about this; if Max were to be "cured" he wouldn't be the kid I know and love. But then, if it were to make life easier for him, how could I say no? If a cure existed, though, it wouldn't be my choice--it would be his.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-53084047332248595212014-03-26T03:21:55.955-04:002014-03-26T03:21:55.955-04:00I knew nobody with CP before Max. And now, I know ...I knew nobody with CP before Max. And now, I know so many awesome kids and adults with it. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-45634147115775967692014-03-26T03:20:45.660-04:002014-03-26T03:20:45.660-04:00Wonderful! Thank you. Wonderful! Thank you. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-82071442696695989302014-03-26T03:20:08.689-04:002014-03-26T03:20:08.689-04:00Wouldn't it be so great if we could have one g...Wouldn't it be so great if we could have one gigantic meeting of parents and kids with CP? Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-33678077518075699982014-03-26T01:42:10.884-04:002014-03-26T01:42:10.884-04:00Thanks for this awesome post! I have a son with sp...Thanks for this awesome post! I have a son with spastic hemiplegia and I learned a lot today just reading around the internet. I stumble across your blog a lot. I actually wrote my own blog post inspired by yours! :)Kammyhttps://www.blogger.com/profile/05470969103933757567noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-80527167320310027292014-03-25T22:45:21.673-04:002014-03-25T22:45:21.673-04:00Correcting a few misconceptions -
Diplegic CP doe...Correcting a few misconceptions -<br /><br />Diplegic CP doesn't *just* affect the arms or *just* affect the legs - it affects one set of limbs *more* than the other. For instance, I have diplegic CP and my legs and arms are about equally affected - though I had hamstring, heel cord and adductor lengthenings when I was 5 which greatly improved my functioning in my legs. If I hadn't had that, my legs would be much more severely affected than my arms.<br /><br />Quadriplegic CP affects all four limbs equally. That's the difference between diplegia and quadriplegia.<br /><br />There is no cure for CP, and frankly, as an adult with CP, I don't want one. CP is part of who I am. I dislike when organizations urge us to "pray for a cure" or "stand up for a cure", etc. because not everyone wants a cure. Some people do and if they make a reasonable, rational, informed choice I can't really argue with that (as much as I may want to). If they find a cure for CP, that's great for people who really want it - but my fear is that it will become forced onto people who are happy the way they are.<br /><br />And adding my own...<br /><br />People with CP use three to five times the amount of energy that people without CP do when they walk and move, according to the National Institute on Neurological Disorders and Stroke. Our muscles (at least in spastic CP) are continually working against us. That is why I prefer to use a wheelchair when it is logistically possible - it is SO much easier for me to do things when I'm not using all my energy on standing and walking. A wheelchair is not a failure or a mark of shame. My wheelchair gives me freedom as do my other mobility aids. :)Cara Liebowitzhttps://www.blogger.com/profile/11860032209178249016noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-19425079906788469762014-03-25T21:15:40.937-04:002014-03-25T21:15:40.937-04:00I too love the calmness and relaxed muscles at sle...I too love the calmness and relaxed muscles at sleep in my boy. Almost makes me forget ;) just before I had Coop my last client at work had CP and that was really my first exposure. ( I used to work with kids with disabilities and access funding for them to attend mainstream services such as kindergarten ) . Go Max go! Smithsholidayroadhttps://www.blogger.com/profile/03614441021886602077noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-60274285953279870342014-03-25T20:30:21.374-04:002014-03-25T20:30:21.374-04:00thanks for this posting I have shared it with a Fa...thanks for this posting I have shared it with a Facebook group for Adults with CP, we greatly appreciate your doing this.. come check us out www.thecpgroup.orgUnknownhttps://www.blogger.com/profile/17784789266357643280noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-75054845297883964592014-03-25T19:11:57.666-04:002014-03-25T19:11:57.666-04:00I think this applies to all of us.I think this applies to all of us.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-60132552448459101282014-03-25T18:55:26.871-04:002014-03-25T18:55:26.871-04:00thanks so much for this. after 16 years, i still ...thanks so much for this. after 16 years, i still get asked questions about my son's CP, and it's just... exhausting sometimes. if you and max are ever in Oakland, CA, you should come visit us! Anonymoushttps://www.blogger.com/profile/10246515219467883351noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-80516628164322619792014-03-25T17:19:31.871-04:002014-03-25T17:19:31.871-04:00I have watched this video maybe five times now!I have watched this video maybe five times now!Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-56021072301694844612014-03-25T17:18:43.883-04:002014-03-25T17:18:43.883-04:00Max rocks! Thanks for stopping by. Max rocks! Thanks for stopping by. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-1003101847790506982014-03-25T17:18:06.030-04:002014-03-25T17:18:06.030-04:00The concept of people with CP having a "full ...The concept of people with CP having a "full and amazing life" can be hard for people to understand. Thanks for sharing just how amazing (and typical!) your daughter is.Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-38391468660632535362014-03-25T17:12:45.458-04:002014-03-25T17:12:45.458-04:00No, we haven't done biofeedback. If you've...No, we haven't done biofeedback. If you've had experience with it, please do share here!Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2690555604340873122014-03-25T12:29:52.369-04:002014-03-25T12:29:52.369-04:00I like how matter of fact this list is! And I love...I like how matter of fact this list is! And I love that you included the link to Maysoon Zayid's TED speech!Emily @ Words I Wheel Byhttp://wordsiwheelby.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-3055724933955298372014-03-25T12:06:15.198-04:002014-03-25T12:06:15.198-04:00about treatments - have you ever looked into biofe...about treatments - have you ever looked into biofeedback? just curious about it.<br />great post by the way.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-55895616120977492162014-03-25T10:28:51.303-04:002014-03-25T10:28:51.303-04:00Max is amazing! I also have cerebral palsy as well...Max is amazing! I also have cerebral palsy as well. I have Spastic Left Hemiplegia. You're an amazing mom.Unknownhttps://www.blogger.com/profile/16880024974204477608noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-26109216948130948602014-03-25T10:20:55.764-04:002014-03-25T10:20:55.764-04:00Max sounds amazing! And you sound like a great mom...Max sounds amazing! And you sound like a great mom. Thanks for all this information. It's so valuable for those of us with no first hand exposure to CP to know.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-75355921871554663462014-03-25T08:22:31.421-04:002014-03-25T08:22:31.421-04:00Thanks for the information! My daughter has spasti...Thanks for the information! My daughter has spastic diplegia after being born 20 weeks premature. When we adopted her, we were told she would never ride a bike, never run, and never be able to play the way other kids do. At 18 she is on her high school bowling team, rides a 10-speed, is learning to drive, swims like a fish and loves school dances. She went prom dress shopping yesterday. So she'll never be able to wear heels or run a marathon. She has a full and amazing life.Chrisa Hickeyhttp://www.themindstorm.netnoreply@blogger.com