tag:blogger.com,1999:blog-1556371561007953336.post5692350967351639325..comments2024-03-16T16:44:18.220-07:00Comments on Bad Cripple: Jerika Bolen and Inspirational Deathwilliam Peacehttp://www.blogger.com/profile/00223601480542461802noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-1556371561007953336.post-64841902445718380652016-09-24T08:55:26.554-07:002016-09-24T08:55:26.554-07:00Love your article. I am from this girls little tow...Love your article. I am from this girls little town. I am also a part time vent user for over 30 years. I still live a full life. I would of loved to chat with her and her family, but they seemed very closed minded. Sounds like they got a lot of false information. This tends to happen with the medical system. I have chronic pain and at one point wanted to cut off my legs. After going from doctor to doctor and getting all sorts of off the wall recommendations. Mostly for spine surgery, I was able to find the right medication and dosage. This story is very sad. Anonymoushttps://www.blogger.com/profile/09794182248152602747noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-78655478263723482532016-08-07T15:04:37.561-07:002016-08-07T15:04:37.561-07:00I can't even describe how pleased I was to fin...I can't even describe how pleased I was to find your post. This story has bothered me from the first moment I heard it. I, too, have SMA Type II. I walked until age 7, and have used a power chair since age 12. I am now 49 years old, and have a 20 year old daughter. My life has not be unlike most other people's lives, with the exception of the fact that I live it on 4 wheels. I have had a few surgeries in my life, but only one, a spinal fusion, was related to my condition; the others were routine and common to everyone. I count myself lucky that I only experience minor aches and pains, and don't suffer excruciating pain - but frankly, I've never even heard of that with SMA. As I have said to other people, I understand that disabilities cannot be compared, but I hate the way this story makes the public view people with disabilities. And I, too, wish that the mainstream media would fact check this story more thoroughly. Because the people who are really brave are the ones that go on surviving, every single day, in the face of all kinds of barriers. Mental. Physical. Emotional. Financial.Khttps://www.blogger.com/profile/12993415741802529774noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-21143270703972620222016-07-26T13:15:01.953-07:002016-07-26T13:15:01.953-07:00Matthew, Much of the coverage of the story makes n...Matthew, Much of the coverage of the story makes no sense to me. She is continually described as ventilator dependent. As you point out, there is no visible trach. I assume she uses a bipap machine which I would not deem a ventilator. She has stated she has had over 30 surgeries. That is an average of two surgeries per year since birth. That too makes no sense. No person with SMA type 2 is interviewed in any mainstream news outlets. The stated goal of the go fund me account was tot pay for a huge final dance. The charge for her final dance was waived by a myriad of businesses. Where is that $33,000 going? I doubt its a hoax but nothing makes sense to me. william Peacehttps://www.blogger.com/profile/00223601480542461802noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-2005705948260180092016-07-26T11:47:06.383-07:002016-07-26T11:47:06.383-07:00Since she's in hospice, she's refusing any...Since she's in hospice, she's refusing any further intervention to keep her alive. She's just being kept comfortable until she dies naturally. The ventilator story is very misleading. She's referring to a BiPap or C-Pap machine people use at night to help them breathe normally. Many people who have sleep apnea use the same machines. That's not a vent keeping them alive. This is purely attention seeking behavior, in my opinion. I have SMA-2 and this story makes me angry and sick of the way she's portraying herself and her life. She's contradicting herself over and over. I have sympathy for her chronic pain. But the rest is bullshit! Anonymoushttps://www.blogger.com/profile/17263733877940703010noreply@blogger.comtag:blogger.com,1999:blog-1556371561007953336.post-17167742900718891462016-07-25T21:10:12.462-07:002016-07-25T21:10:12.462-07:00There's something odd about this story. They a...There's something odd about this story. They are saying she will have her ventilator switched off in order to die, but look at any of her pictures and there's no sign of a ventilator. She doesn't have a tracheostomy which all modern ventilators rely on (a few polio survivors have an external shell based on the same principles as an iron lung, but they're rare). SMA doesn't usually result in ventilator dependency at this age; some people with it have them because they cannot breathe *adequately*, but this is not the same as being unable to breathe at all. So how is she going to achieve her aim? Or do they just mean she will refuse further intervention to keep her alive, and access palliative care? At best this story is misleading and at worst it's all a big hoax.Matthew Smithhttps://www.blogger.com/profile/16675719484819810707noreply@blogger.com