March 12, 2019 at 10:17 am #17731
I’d like to thank the Acadamy for this award… Wait, scratch that.
I’m 51-years-old and I have SMA 3 (although I think I’m more like a 2 since I only walked, albeit awkwardly, until I was 6 without braces). My sister also had it, but she passed away in 1996. Hers was much worse. Feel free to check out my profile for more info about me.
Now, to answer some questions:
-What brought you to the forums? Are you an SMA patient or caregiver?
I’m a person who has SMA3 (I don’t care for the term “patient”) and I came to the forums by accident while looking for general news about SMA.
-What topics are you interested in discussing or learning more about?
I have no idea. I’m just going to wing it.
-Are you new to the SMA News Today community or have you been a part of it for a while?
-Are you involved in any other SMA communities or advocacy groups?
Nope. I’ve never been a big fan of such things, really.
March 12, 2019 at 10:51 am #17735Kevin SchaeferKeymaster
Thanks for introducing yourself Jennifer! We’re happy to have you here.
I’m sorry you lost your sister back then, but thank you for being open about it. With these forums, we want to provide both information and community support.
To learn more about me, you can check out my weekly column on the main site: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/.
Feel free to post here anytime. Also, I read in your profile about your relationship with your boyfriend. I’d love to hear more about that, and how the two of you met. We have a forum for dating and relationships.
Thanks again for joining us!
March 12, 2019 at 4:45 pm #17743Kelly MillerParticipant
Hi there Jennifer! It’s great to meet you and learn a little bit about you. I’m curious… Were you newly diagnosed? The reason I ask is you said that you were looking for info on SMA, so I thought maybe you had just been diagnosed. If you haven’t yet found whatever you were looking for, don’t hesitate to ask here in the forums. You’ll find that all kinds of things are discussed, all sorts of questions are asked, and there is definitely not a shortage of opinions!
March 12, 2019 at 5:26 pm #17744
No, I was diagnosed when I was 2 and I’m 51 now. I was just looking up about anything new that I hadn’t heard before, including possible treatments. I read on another thread that your husband is from Cincinnati. What part of town? I live in Milford. Thanks for the add!
March 12, 2019 at 5:46 pm #17745DeAnn RKeymaster
Hey Jennifer! Welcome. It’s nice to have you here. Feel free to jump in on any of the topics of conversation, or create ones of your own. We love having a community where we can share, pose questions and learn from each other. Have a great day!
March 13, 2019 at 8:49 pm #17765Michael MoraleKeymaster
Hey Jennifer, welcome to the forum. You will find a lot of great people here, and if you have a question, please feel free to ask. It’s nice to have a place where we all know what each of us are going through, and there is no judgment past in this group of people. If you have a question, make sure that you ask, because if you have a question, trust me, there will be others that have the same question.
March 14, 2019 at 9:38 am #17772Dennis TurnerParticipant
Jennifer, I am 59 year old who was diagnosed with Kugelberg-Weilander disease when I was 15. Didn’t have the internet and didn’t really know it was a MD until I was in my thirties.
I walked until about two years ago, but progression/lost has been very rapid since that time.
This is a good group of people and a good community to be part of.
March 14, 2019 at 3:32 pm #17790KrystalParticipant
Welcome Jennifer! I am a lurker on this forum, as I do not have SMA, but my 15-month daughter was diagnosed a few months ago at 12 months old with Type 2. She never walked, or stand. She can only sit up unassisted. I got here to learn about SMA, to learn about how young and older members of this forum live. I think it’s great to have interactions with other newly diagnosed families with babies close to my daughter’s age, but I also think it’s important to interact with those who have SMA and are older, to get a better perspective on SMA. I am learning a lot by lurking and reading, and I will definitely take a lot of these topics to my daughter as she gets older.
March 14, 2019 at 4:54 pm #17804
My sister never walked either. I’m not sure if she could sit up unassisted or not. Unfortunately, she got a double whammy. When she was 5ish she contracted encephalitis which caused permanent paralysis on her left side and learning deficits (she was left-handed and had an IQ of 180 prior). She had a very difficult life, physically. Luckily, my parents were superheroes. Dad was the calm one and Mom was the fighter. Back in the day, schools kept telling her that they couldn’t teach us. Mom fought tooth and nail until they DID teach us. Anyway, stay positive. Your daughter has picked a great period to be alive, relatively speaking.
March 14, 2019 at 4:47 pm #17777Adnan HafizovicParticipant
Hi Jennifer I have same type3 and I also walked only few months.And about these group,here you can find a lot of informations about SMA and cures for SMA,you know about Spinraza and Zolgensma.And I’m from Bosnia and Hercegovina that is one small country in Europe.
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