Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hello everyone, my name is Arashi and I'm new to this group. Yesterday, my very dear friends received the news that their baby has been diagnosed with SMA 1. I don't yet know all the details but the doctors have basically told them to enjoy the next few months because that's all the longer the child is expected to live. I've been reading about SMA almost non-stop since I learned the news and this seems like a rather extreme thing for them to say but I suppose every situation has different complications affecting life expectancy. No matter how you look at it, the diagnosis is devastating and heartbreaking. I have joined this group because I would like to do everything in my power to help my friends and their children through the days ahead. Her husband works for my husband and we are friends outside of the workplace so we will be dealing with everything this family is going through on a daily basis, right along with them. As this situation unfolds, I'm sure I'll eventually gain a slightly better grasp for what I can do to help my friends but in the meantime, what would you advise my husband and I do to help out right away? Especially with the holidays right around the corner, I'm totally overwhelmed with what we should and shouldn't do or say right now. Any thoughts? Thanks in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hi Arashi, Welcome to our group. I'm sorry about the difficult news about your friends's daughter. It's very scary to be faced with such an unknown, and there's not much optimistic information out there about SMA, Type I. Historically, children with Type I have died very young. Over the years, with increased understanding and improved technology, people live sometimes much longer. We have a number of adults with Type I in this group and I'm sure they'll introduce themselves. I (age 41) and my niece (age 14) have Type II. One thing that's important to know is that SMA has no affect on one's intellect, so it's important to treat SMA kids the same as non-disabled kids as much as possible. At this early age in your young friends life that's less complicate with regard to playing and entertainment. The harder stuff is all the needed medical intervention and preventive care. Dr. Jon Bach treats people with neuromuscular disabilities quite effectively with aggressive non-invasive respiratory care protocols. See his web site at: http://www.doctorbach.com/ I and most others here highly recommend him. As for getting through the holidays and beyond, I strongly urge you to disregard life-expectancy predictions. I was suppose to die before the age of 2, then 4, and then 14. At that point my mother told the predicting doctor to " F% & @ off " (poor guy) and we decided to plan for my long future. My mother's defiant spirit has served me well. I've always been realistic about my physical vulnerabilities, but I decided to simply live 'til I'm dead. When I was 15 and wanted to start planning for college, my father told me, " Don't worry about the future, Pumpkin. " I told him to not visit me (my parents were divorced) until he could stop obsessing about me dying, or just keep it to himself. Now, I'm creaky and old...lol. It's a difficult road, I won't lie, but it doesn't have to be an unhappy one. All the best, Alana Berkeley, CA, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hi Arashi, Many doctors are giving parents the advice your friends received when their children are diagnosed with SMA-1. They may not know that in the past few years, there have been significant advances in techniques to care for these children. Today, there are options to " just taking your child home " and your friends might want to consider them. One thing you can do is go on the website www.SMASupport.com and leave a message on the guestbook. You will hear back from some parents of children with SMA-1 who are doing well. God bless, Gearhart oldcableguy2002 <arashikisama@...> wrote: Hello everyone, my name is Arashi and I'm new to this group. Yesterday, my very dear friends received the news that their baby has been diagnosed with SMA 1. I don't yet know all the details but the doctors have basically told them to enjoy the next few months because that's all the longer the child is expected to live. I've been reading about SMA almost non-stop since I learned the news and this seems like a rather extreme thing for them to say but I suppose every situation has different complications affecting life expectancy. No matter how you look at it, the diagnosis is devastating and heartbreaking. I have joined this group because I would like to do everything in my power to help my friends and their children through the days ahead. Her husband works for my husband and we are friends outside of the workplace so we will be dealing with everything this family is going through on a daily basis, right along with them. As this situation unfolds, I'm sure I'll eventually gain a slightly better grasp for what I can do to help my friends but in the meantime, what would you advise my husband and I do to help out right away? Especially with the holidays right around the corner, I'm totally overwhelmed with what we should and shouldn't do or say right now. Any thoughts? Thanks in advance. Gearhart Victor's Caregiver and Friend To learn more about Victor and/or get copies of VICTORious Life see www.VictorAlvarezWeb.com --------------------------------- Be a better sports nut! Let your teams follow you with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 When I was 20 a very respected neurologist I was seeing at a MDA clinic wrote in my record that he didn't expect me to walk much longer let alone ski much longer. I skied well another 10 years and walked another 20, long after he retired. I didn't see that note in my record until many years after it was written, good thing. Don't beleive everything the Dr's say! Hang in there! Good luck to your friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2007 Report Share Posted December 3, 2007 hi just to say dont look to poorly on the idea of there child havin sma my sister also had sma 1 and she lived a short in years however fantasticly full life she dyed when she was 2 years 10 mounths however she touched and changed more peoples lifes that you or i will every do, dont look on it as a bad thing just think on it as diffrent than what you were exspecting as for every time the child is sick there is a smile right behind it lauramechelle type 2 Mark Overson <oversonlanding@...> wrote: When I was 20 a very respected neurologist I was seeing at a MDA clinic wrote in my record that he didn't expect me to walk much longer let alone ski much longer. I skied well another 10 years and walked another 20, long after he retired. I didn't see that note in my record until many years after it was written, good thing. Don't beleive everything the Dr's say! Hang in there! Good luck to your friends. --------------------------------- Sent from & #45; the World & #39;s favourite mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2007 Report Share Posted December 3, 2007 I just joined the group, and yours is the first message I saw. We lost our 6 month old last year, the day after Thanksgiving. One of the things that got us through was the support of everyone. Speaking from my experience only, we basically moved into the hospital for the month of September, and the month of November. My husband missed work and was late quite often just because of the strain of living in the hospital. As these are friends, I'm sure you know where the line of leniency is. Also, care packages, pre-made meals, crafts, hobbies are nice also. We practically lived on microwave and take out for those two months. If there are other children involved (as with us), babysitters are WONDERFUL. Over nighters are helpful with hospital stays, too. But nothing else matters more than the love and support we received during our time. > > Hello everyone, my name is Arashi and I'm new to this group. > > Yesterday, my very dear friends received the news that their baby has > been diagnosed with SMA 1. I don't yet know all the details but the > doctors have basically told them to enjoy the next few months because > that's all the longer the child is expected to live. I've been > reading about SMA almost non-stop since I learned the news and this > seems like a rather extreme thing for them to say but I suppose every > situation has different complications affecting life expectancy. No > matter how you look at it, the diagnosis is devastating and heartbreaking. > > I have joined this group because I would like to do everything in my > power to help my friends and their children through the days ahead. > Her husband works for my husband and we are friends outside of the > workplace so we will be dealing with everything this family is going > through on a daily basis, right along with them. As this situation > unfolds, I'm sure I'll eventually gain a slightly better grasp for > what I can do to help my friends but in the meantime, what would you > advise my husband and I do to help out right away? Especially with > the holidays right around the corner, I'm totally overwhelmed with > what we should and shouldn't do or say right now. Any thoughts? > > Thanks in advance. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Hi Arashi: First rule: Don't believe everything bad the doctors say! My 17 months daughter was diagnosed with SMA 1 last February and a very well known doctor, who actually is an expert in SMA, told me to enjoy while she was with us as there was nothing we could do for a type 1. He told us a life expectancy of 2 years ... Guess what? We decided not to go for it. We do everything loving parents can do for their child. She has chest therapy, speech therapy, a gastrostomy, uses a non-invasive ventilator (Bipap) as per Dr. Bach protocol at nights and she is DOING GREAT! She is a happy little girl (go check our pics on her album - Catarina " Kitty Cat " ) loves dancing in our arms, loves watching TV and is starting to communicate with da-da, ta-ta, boo-boo, etc. She still can't hold her head or sit, has quite none leg and very little arm strength but still enjoys very much her days! How do we know? She reaaaaaly smiles and giggles all day! She is really precious and very intelligent. I'm not saying it's easy ... it is actually very hard. We did also " live " in a hospital for a couple of months when she was first hospitalized last April but we manage to avoid long term invasive ventilation and left the hospital with the gastrostomy and NIV. Sometimes I get upset but it takes nothing more than one Catarina’s smile to cheer me up! She deserves to be treated as best as we can and so does your friend’s baby !!! Don’t take it for granted … go fight and when the strength is reducing come to us and we’ll do our best in “refilling the gas”! Feel free to ask any questions you might have. Hugs, Iz (mom to Catarina “KittyCat” – 17 months – SMA I) New to SMA Hello everyone, my name is Arashi and I'm new to this group. Yesterday, my very dear friends received the news that their baby has been diagnosed with SMA 1. I don't yet know all the details but the doctors have basically told them to enjoy the next few months because that's all the longer the child is expected to live. I've been reading about SMA almost non-stop since I learned the news and this seems like a rather extreme thing for them to say but I suppose every situation has different complications affecting life expectancy. No matter how you look at it, the diagnosis is devastating and heartbreaking. I have joined this group because I would like to do everything in my power to help my friends and their children through the days ahead. Her husband works for my husband and we are friends outside of the workplace so we will be dealing with everything this family is going through on a daily basis, right along with them. As this situation unfolds, I'm sure I'll eventually gain a slightly better grasp for what I can do to help my friends but in the meantime, what would you advise my husband and I do to help out right away? Especially with the holidays right around the corner, I'm totally overwhelmed with what we should and shouldn't do or say right now. Any thoughts? Thanks in advance. ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 Hi Martha, Welcome to our group. There are a number of members with SMA III who will be able to share their experiences with you. I also recommend checking out the following: http://www.fsma.org/ http://www.smacommunity.org/ Again, welcome. Alana Age 44 - SMA II Berkeley, CA > > HI, > I am a 46 year old Female and I have been having muscle weakness and just living with it for years. It is keeping me from being able to go up steps and stand from sitting and even getting my feet in the car. I have some weakness in my proxmial arm musles and one side of my neck and my eye muscle is a little weak. I have tremors for many years. My blood tests have been negative like ck, etc... the Nerve conduction study was normal and the EMG was abnormaly Large (even uneffected muscles). Most of my deep tendon reflexes are absent with only one or two being deminished. The doctor at the university says it looks like SMA type 3. I am a little confused about the type 3 and type 4 if I am 46. What is the usual prognosis for someone like me? From what I have read there is no treatment. Anyone know where I can find out information about my " type " SMA. I just found this out Friday and I'm scheduled for the genetic testing this week. Thank you for any informaion you can offer. > Quote Link to comment Share on other sites More sharing options...
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