Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 I have Type II and am 48 y/o. Those life expectancies are most often wrong. Does he have any respiratory equipment like a cough assist or The Vest Airway Clearance System? These types of devices can help him stay well.  Lori ________________________________ From: vanillasky102 <pxo00102@...> Sent: Tuesday, July 5, 2011 8:43 PM Subject: SMA Type 2 or 3  Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 I don't know what " type " of SMA I have but I never crawled or walked, when i was diagnosed the doctors said I wouldn't live past the age of two. I began using a power wheelchair at age 4 and got a tracheotomy when I was 7 yrs old. I am now 34 and happily married! ~a ________________________________ From: vanillasky102 <pxo00102@...> Sent: Tue, July 5, 2011 9:43:34 PM Subject: SMA Type 2 or 3 Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 I was diagnosed as SMA type 3 when I was 4 and my parents were told I would not live to be a teen. My onset was birth so who knows what type I really am. I've used a wheelchair since I was 16, trach since I was 22, and been vent dependent for the last 4 years. I will be 63 in October. Don't let the numbers scare you. Lainie (Oregon) From: vanillasky102 <pxo00102@...> Subject: SMA Type 2 or 3 Date: Tuesday, July 5, 2011, 6:43 PM  Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 I'm type 2, I'll be 38 in September. I'd pass as a type 2/3, and currently strengthwise am similar, except I don't use any machines and have yet to have a bout of pneumonia. I have never walked and my expectancy was 8 or 9 years old. Simone Etsy Store: http://www.etsy.com/shop/ssegerter My Store: http://www.zazzle.com/SunshineTreasures* My Blog: http://sunshineisdarkness.blogspot.com My Portfolio: http://www.behance.net/simones ________________________________ From: vanillasky102 <pxo00102@...> Sent: Tue, July 5, 2011 9:43:34 PM Subject: SMA Type 2 or 3 Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2011 Report Share Posted July 5, 2011 I believe so. Not sure, he does treatments when there is something caught in his lungs. OMG your 48!!! But how are you physically? Still strength in your arms? Can you feed yourself? Sorry if I am asking too much, I am just thinking down the road. On Tue, Jul 5, 2011 at 8:59 PM, Lori G <lorig713@...> wrote: > ** > > > I have Type II and am 48 y/o. Those life expectancies are most often > wrong. > > Does he have any respiratory equipment like a cough assist or The Vest > Airway Clearance System? These types of devices can help him stay well. > > > Lori > > ________________________________ > From: vanillasky102 <pxo00102@...> > > Sent: Tuesday, July 5, 2011 8:43 PM > Subject: SMA Type 2 or 3 > > > > Hi everyone, I am currently dating a man who has SMA. He was never told > which type of SMA but I have been doing a lot of reading it appears that is > between Type 2 and Type 3. He stopped walking at the age of 4, and had to > use an electric chair from that day on. He was told his life expectancy was > between 18-20. He is now 21! Which is a year he didn't know he would have. > One night I asked him, if he had ever met anyone with what he has who was > older? He said no, that the only people that have SMA that are of older age > are those who have Type 4. > Every year he has pneumonia, sometimes it can be treated at home but for > the past two years he had been hospitalized. He can't move his legs at all, > he has very little muscle left in his arms. He can still pick up plastic > utensils, he needs a breathing machine at night & during the night he spits > up his saliva. When he eats, he most likely coughs because there is > something stuck in his lungs. > My big question here is, if a person has SMA type 3, with some symptoms of > Type 2. Does anyone if they know or have met someone with that type of SMA > how old that person was? > I know that the disease attacks people differently. But I was just wanting > to know if anyone knew someone who is over the age of 25 or 30 with SMA type > 2 or 3. > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2011 Report Share Posted July 6, 2011 Hello, I am type 3 (wasn't officially diagnosed until my early 20's though can remember having symptoms as early as 4 or 5 years old), I'm 42 years old and I am still walking. I still have some strength left in my legs, though not much. My upper body is pretty strong. I have two boys ages 6 and 2. The two year old weighs over 30 lbs and as long as I am leaning against something, I can still lift him up and put him on my hip. I don't ever try and walk holding him any more because I am too afraid I might fall and hurt him, though if I had to I probably could. I was told my life expectancy is normal and I have only once been hospitalized with pneumonia, and that was when I was a teenager. I don't use any breathing equipment though I occasionally get a bit wheezy and use an asthma inhaler when needed, but that is not very often. Don'y listen to the life expectancy from the doctor, everyone is different and I hate it when they lump people together. I was told at the age of 23 that I would be in a wheelchair by the time I was 40 and I proved them wrong! Good luck to you and your partner! Laurie. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2011 Report Share Posted July 6, 2011 I was diagnosed with type 3 when I was about 15. I'm 41 now and just at the point where I have to stop walking. Going Friday to start looking at wheelchair vans. My legs really can't hold my own weight anymore and my arms are going pretty quickly, too. I work full time and can do this with the help of a few guys in the office who help me out of my truck and they push my down the hall in my office chair when I have to use the restroom. I hope that I can get the van thing sorted out so I can use my power chair at work and rely less on other people. At home, I rely on my wife to help with almost everything. Tom SMA Type 2 or 3  Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2011 Report Share Posted July 6, 2011 , It is important to promote deep breathing and good circulation. Try to make a list of different activities which support this objective. Then, let your boyfriend pick one activity every day. I'm sure he will make good selections. On a serious note, the various classifications of SMA are practically meaningless. Although I was diagnosed before one-year-old, which would suggest SMA I, 46 years later, I'm still here and feel fairly indestructible. Certainly I am weaker, but I am getting smarter about responding to different challenges. Best of luck, T.K. Small > > Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. > Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. > My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? > I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2011 Report Share Posted July 6, 2011 Hi, I also have Type II and am 45. I use plastic utensils for eating, a power chair with a tilt/recline, a height-adjustible hospital bed converted.to accommodate a full-size mattress, a daytime ventilator with a small mouthpiece, a nighttime vent with nasel pillows, and about 9 or 10 hrs of personal assistance funded by the state so I can get up, bathe, dress, cook, keep up the house etc. without relying on my partner. I was told I wouldn't live past age 3; then age13; then age 20...here I am, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 My strength...of course, I can't use my legs. Nerve pain in my right leg is controlled by Lyrica (miracle drug!). My left arm has almost no strength anymore. My right arm is still somewhat functional (typing, lift very weight items on my desk). I can feed myself with setup. puts a small rolled my towel under my right elbow. Lori ________________________________ From: Ortega <pxo00102@...> Sent: Tuesday, July 5, 2011 10:13 PM Subject: Re: SMA Type 2 or 3 I believe so. Not sure, he does treatments when there is something caught in his lungs. OMG your 48!!! But how are you physically? Still strength in your arms? Can you feed yourself? Sorry if I am asking too much, I am just thinking down the road. On Tue, Jul 5, 2011 at 8:59 PM, Lori G <lorig713@...> wrote: > ** > > > I have Type II and am 48 y/o. Those life expectancies are most often > wrong. > > Does he have any respiratory equipment like a cough assist or The Vest > Airway Clearance System? These types of devices can help him stay well. > > > Lori > > ________________________________ > From: vanillasky102 <pxo00102@...> > > Sent: Tuesday, July 5, 2011 8:43 PM > Subject: SMA Type 2 or 3 > > > > Hi everyone, I am currently dating a man who has SMA. He was never told > which type of SMA but I have been doing a lot of reading it appears that is > between Type 2 and Type 3. He stopped walking at the age of 4, and had to > use an electric chair from that day on. He was told his life expectancy was > between 18-20. He is now 21! Which is a year he didn't know he would have. > One night I asked him, if he had ever met anyone with what he has who was > older? He said no, that the only people that have SMA that are of older age > are those who have Type 4. > Every year he has pneumonia, sometimes it can be treated at home but for > the past two years he had been hospitalized. He can't move his legs at all, > he has very little muscle left in his arms. He can still pick up plastic > utensils, he needs a breathing machine at night & during the night he spits > up his saliva. When he eats, he most likely coughs because there is > something stuck in his lungs. > My big question here is, if a person has SMA type 3, with some symptoms of > Type 2. Does anyone if they know or have met someone with that type of SMA > how old that person was? > I know that the disease attacks people differently. But I was just wanting > to know if anyone knew someone who is over the age of 25 or 30 with SMA type > 2 or 3. > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2011 Report Share Posted July 7, 2011 I was diagnosed with muscular dystrophy at 6 months old, never have walked & my life expectancy was 12 yrs. old. I am now 57 years old! Earlier in my diagnosis there were no types of Muscular Dystrophy, however now they say I have SMA, probably 2. Yes, pneumonia is a problem, I've moved from the humidity to a dry climate which has helped. Also, every morning I use an inhaler & my home health aids do percussion on my lungs...front & back for just a couple of minutes. With our lung problems it's good to get mucus out of there so infection doesn't set in. God bless & stay strong! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2011 Report Share Posted July 10, 2011 I have SMA. I'm not absolutely sure what type, but from my reading, I'm pretty sure its type 2. I'm 53. On 7/5/2011 6:43 PM, vanillasky102 wrote: > > > Hi everyone, I am currently dating a man who has SMA. He was never > told which type of SMA but I have been doing a lot of reading it > appears that is between Type 2 and Type 3. He stopped walking at the > age of 4, and had to use an electric chair from that day on. He was > told his life expectancy was between 18-20. He is now 21! Which is a > year he didn't know he would have. One night I asked him, if he had > ever met anyone with what he has who was older? He said no, that the > only people that have SMA that are of older age are those who have > Type 4. Every year he has pneumonia, sometimes it can be treated at > home but for the past two years he had been hospitalized. He can't > move his legs at all, he has very little muscle left in his arms. He > can still pick up plastic utensils, he needs a breathing machine at > night & during the night he spits up his saliva. When he eats, he > most likely coughs because there is something stuck in his lungs. My > big question here is, if a person has SMA type 3, with some symptoms > of Type 2. Does anyone if they know or have met someone with that > type of SMA how old that person was? I know that the disease attacks > people differently. But I was just wanting to know if anyone knew > someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank > you > > -- Guy W. San Leandro, CA http://www.xango.org http://stonebender.livejournal.com/ " If you can't believe what you read in comic books, what can you believe? " -- Bullwinkle J. Moose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2011 Report Share Posted July 14, 2011 Hi I am Mohini from India. I have SMA type 2 and I am 26 now. My brother is too suffring same diesease and he is 17. The condition that you depict about your friend is same of my brother. However, my I am quite stronger and can do little on my own like typing,brushing,eating operating my electric chair etc. Sorry have no idea about SMA 3 > > > Hi everyone, I am currently dating a man who has SMA. He was never > told which type of SMA but I have been doing a lot of reading it > appears that is between Type 2 and Type 3. He stopped walking at the > age of 4, and had to use an electric chair from that day on. He was > told his life expectancy was between 18-20. He is now 21! Which is a > year he didn't know he would have. One night I asked him, if he had > ever met anyone with what he has who was older? He said no, that the > only people that have SMA that are of older age are those who have > Type 4. Every year he has pneumonia, sometimes it can be treated at > home but for the past two years he had been hospitalized. He can't > move his legs at all, he has very little muscle left in his arms. He > can still pick up plastic utensils, he needs a breathing machine at > night & during the night he spits up his saliva. When he eats, he > most likely coughs because there is something stuck in his lungs. My > big question here is, if a person has SMA type 3, with some symptoms > of Type 2. Does anyone if they know or have met someone with that > type of SMA how old that person was? I know that the disease attacks > people differently. But I was just wanting to know if anyone knew > someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank > you > > -- Guy W. San Leandro, CA http://www.xango.org http://stonebender.livejournal.com/ " If you can't believe what you read in comic books, what can you believe? " -- Bullwinkle J. Moose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2011 Report Share Posted July 24, 2011 I am 48 too. ________________________________ From: Ortega <pxo00102@...> Sent: Tuesday, July 5, 2011 9:13 PM Subject: Re: SMA Type 2 or 3 I believe so. Not sure, he does treatments when there is something caught in his lungs. OMG your 48!!! But how are you physically? Still strength in your arms? Can you feed yourself? Sorry if I am asking too much, I am just thinking down the road. On Tue, Jul 5, 2011 at 8:59 PM, Lori G <lorig713@...> wrote: > ** > > > I have Type II and am 48 y/o. Those life expectancies are most often > wrong. > > Does he have any respiratory equipment like a cough assist or The Vest > Airway Clearance System? These types of devices can help him stay well. > > > Lori > > ________________________________ > From: vanillasky102 <pxo00102@...> > > Sent: Tuesday, July 5, 2011 8:43 PM > Subject: SMA Type 2 or 3 > > > > Hi everyone, I am currently dating a man who has SMA. He was never told > which type of SMA but I have been doing a lot of reading it appears that is > between Type 2 and Type 3. He stopped walking at the age of 4, and had to > use an electric chair from that day on. He was told his life expectancy was > between 18-20. He is now 21! Which is a year he didn't know he would have. > One night I asked him, if he had ever met anyone with what he has who was > older? He said no, that the only people that have SMA that are of older age > are those who have Type 4. > Every year he has pneumonia, sometimes it can be treated at home but for > the past two years he had been hospitalized. He can't move his legs at all, > he has very little muscle left in his arms. He can still pick up plastic > utensils, he needs a breathing machine at night & during the night he spits > up his saliva. When he eats, he most likely coughs because there is > something stuck in his lungs. > My big question here is, if a person has SMA type 3, with some symptoms of > Type 2. Does anyone if they know or have met someone with that type of SMA > how old that person was? > I know that the disease attacks people differently. But I was just wanting > to know if anyone knew someone who is over the age of 25 or 30 with SMA type > 2 or 3. > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2011 Report Share Posted July 31, 2011 I would say it's between 1 and 2. ________________________________ From: vanillasky102 <pxo00102@...> Sent: Tuesday, July 5, 2011 7:43 PM Subject: SMA Type 2 or 3  Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2011 Report Share Posted August 1, 2011 greetings, i'm 46, type 1 and going strong. don't listen to life expectancy b.s., each person is different and i've out lived some of my doctors! feel free to email me. blessings, ellyn > > I would say it's between 1 and 2. > > > > ________________________________ > From: vanillasky102 <pxo00102@...> > > Sent: Tuesday, July 5, 2011 7:43 PM > Subject: SMA Type 2 or 3 > > >  > Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. > Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. > My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? > I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 Wow! Do you use BiPAP 24/7? ________________________________ From: " ellynpeace@... " <ellynpeace@...> Sent: Monday, August 1, 2011 3:02 PM Subject: Re: SMA Type 2 or 3  greetings, i'm 46, type 1 and going strong. don't listen to life expectancy b.s., each person is different and i've out lived some of my doctors! feel free to email me. blessings, ellyn > > I would say it's between 1 and 2. > > > > ________________________________ > From: vanillasky102 <pxo00102@...> > > Sent: Tuesday, July 5, 2011 7:43 PM > Subject: SMA Type 2 or 3 > > >  > Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. > Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. > My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? > I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. > Thank you > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 hi aul, were you asking me if i use bi-pap 24/7? no, i don't use any breathing or eating apparatus. if i am sick, then i use the Vest Airway Clearance system and i do 10 minute breathing treatments every 3 to 4 hours with an IPPB (Intermittent Positive Pressure Breathing). pretty much all natural here, though i am paying attention to everyone's experiences with things i may need in the future. my concern all of my life has been not to become dependent on technology until absolutely necessary. tell me about yourself! blessings, ellyn > > > > I would say it's between 1 and 2. > > > > > > > > ________________________________ > > From: vanillasky102 <pxo00102@> > > > > Sent: Tuesday, July 5, 2011 7:43 PM > > Subject: SMA Type 2 or 3 > > > > > >  > > Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. > > Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. > > My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? > > I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. > > Thank you > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2011 Report Share Posted August 6, 2011 Hi, If you don't use it at all, I am 100% sure you don't have type 1. About myself , I have type 2 and I need to use BiPAP when I sleep or when I just feel weaker than usual. 2 years ago I lost my ability to chew solid food. Is there anything particular you would like to know? Peace, Aul ________________________________ From: " ellynpeace@... " <ellynpeace@...> Sent: Wednesday, August 3, 2011 2:44 PM Subject: Re: SMA Type 2 or 3  hi aul, were you asking me if i use bi-pap 24/7? no, i don't use any breathing or eating apparatus. if i am sick, then i use the Vest Airway Clearance system and i do 10 minute breathing treatments every 3 to 4 hours with an IPPB (Intermittent Positive Pressure Breathing). pretty much all natural here, though i am paying attention to everyone's experiences with things i may need in the future. my concern all of my life has been not to become dependent on technology until absolutely necessary. tell me about yourself! blessings, ellyn > > > > I would say it's between 1 and 2. > > > > > > > > ________________________________ > > From: vanillasky102 <pxo00102@> > > > > Sent: Tuesday, July 5, 2011 7:43 PM > > Subject: SMA Type 2 or 3 > > > > > >  > > Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. > > Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. > > My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? > > I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. > > Thank you > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Dear Aul, Respectfully, your 100% diagnosis of me is wrong. My brother is someone that you'd call a classic type 1 - dead before the age of 3 years. My diagnosis came at 5 weeks old and hasn't changed - SMA type 1. Yes, my case is not typical, however, I can name at least 5 type 1 folks over 40! Two over 60 years! Diagnosis is always based on age of onset, that's according to Dr. Graves, MD at UCLA Neurology and Dr. Barry Russman, MD Neurology in CT and WA, as well as all the literature I've read. I'm definitely a lot weaker than I used to be, but I've never walked, crawled, sat myself up, dressed myself, etc., and if my head goes back then I'm stuck! We're all unique and this disease looks different on us all! Blessings, ellyn > > > > > > I would say it's between 1 and 2. > > > > > > > > > > > > ________________________________ > > > From: vanillasky102 <pxo00102@> > > > > > > Sent: Tuesday, July 5, 2011 7:43 PM > > > Subject: SMA Type 2 or 3 > > > > > > > > >  > > > Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. > > > Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. > > > My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? > > > I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. > > > Thank you > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2011 Report Share Posted August 14, 2011 Hi, Type I means that you can't even breathe without support. Have you read Dr. Bach? There is no one registered with type I who can live without breathing support. The longest living child is 10 years old. Peace, Aul ________________________________ From: " ellynpeace@... " <ellynpeace@...> Sent: Sunday, August 7, 2011 11:54 PM Subject: Re: SMA Type 2 or 3  Dear Aul, Respectfully, your 100% diagnosis of me is wrong. My brother is someone that you'd call a classic type 1 - dead before the age of 3 years. My diagnosis came at 5 weeks old and hasn't changed - SMA type 1. Yes, my case is not typical, however, I can name at least 5 type 1 folks over 40! Two over 60 years! Diagnosis is always based on age of onset, that's according to Dr. Graves, MD at UCLA Neurology and Dr. Barry Russman, MD Neurology in CT and WA, as well as all the literature I've read. I'm definitely a lot weaker than I used to be, but I've never walked, crawled, sat myself up, dressed myself, etc., and if my head goes back then I'm stuck! We're all unique and this disease looks different on us all! Blessings, ellyn > > > > > > I would say it's between 1 and 2. > > > > > > > > > > > > ________________________________ > > > From: vanillasky102 <pxo00102@> > > > > > > Sent: Tuesday, July 5, 2011 7:43 PM > > > Subject: SMA Type 2 or 3 > > > > > > > > >  > > > Hi everyone, I am currently dating a man who has SMA. He was never told which type of SMA but I have been doing a lot of reading it appears that is between Type 2 and Type 3. He stopped walking at the age of 4, and had to use an electric chair from that day on. He was told his life expectancy was between 18-20. He is now 21! Which is a year he didn't know he would have. One night I asked him, if he had ever met anyone with what he has who was older? He said no, that the only people that have SMA that are of older age are those who have Type 4. > > > Every year he has pneumonia, sometimes it can be treated at home but for the past two years he had been hospitalized. He can't move his legs at all, he has very little muscle left in his arms. He can still pick up plastic utensils, he needs a breathing machine at night & during the night he spits up his saliva. When he eats, he most likely coughs because there is something stuck in his lungs. > > > My big question here is, if a person has SMA type 3, with some symptoms of Type 2. Does anyone if they know or have met someone with that type of SMA how old that person was? > > > I know that the disease attacks people differently. But I was just wanting to know if anyone knew someone who is over the age of 25 or 30 with SMA type 2 or 3. > > > Thank you > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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