Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Hi Randy, I'm Tom, 37 and type 3, also. Sounds like we've experienced a lot of the same things. Welcome to the group! -------------- Original message -------------- From: Randy Cormier <randycormier@...> Hi my name is Randy. I am 41 and have SMA III. I am married and have two daughters aged 13 and 10. I live in Cambridge Ontario (about an hour west of Toronto) and work for Sun Life Financial as an Information Technology manager with a team of business analysts reporting to me. I enjoy working with the business area to find ways to apply technology solutions to meet their business needs. I was diagnosed when I was 19 but started showing symptoms around age 12/13. The progression was fairly slow for me and I was able to live life fairly normally for a long time. That was maybe good and bad for me, because I didn't really deal with what it meant to have this disease. For the most part I ignored it, made stupid/lame excuses for why I couldn't participate in the few activities that I was unable to do. Didn't tell anyone outside my immediate family that I had SMA. That has changed for me though over the past few years. I use a scooter full time now and require assitance from my wife for pretty much all daily activities. I have been battling depression for the last year or so which is around the time that I pretty much lost whatever independece I had left. I am working on this, looking for ways to try and get some independence back. I finally applied to the wheel chair accessible public transportation in the area. I can still drive with hand controls, but need to have someone who can take the scooter in and out of the van. Looking for activities that I can do rather than focusing on the ones that I can't. Anyway, I saw a reference to this group on a forum posting on FSMA's website, so I thought I would join and see what it was about. Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 For the most part I ignored it, made stupid/lame excuses for why I couldn't participate in the few activities that I was unable to do. Didn't tell anyone outside my immediate family that I had SMA. Boy, does that sound familar. My guess is that most type III's have a similar story. In High School, the only thing I couldn't pull off were hurdles in Gym class. I totally hid it from everyone until I was at least 30. That's how I dealt with it(denial) In a way, it was my way of beating the illness and I think I kicked it's ass. Now , at 52 there's no more denial. I found it's best to just explain it right away. Certainly can't hide it. But one of the tougher things I've had to do lately was get together with some old buddies who hadn't seen me in quite awhile. I still have a really tough time with that. I tend to avoid those situations with all but a few freinds. Anyway, welcome to the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 I also avoid people I haven't seen in awhile. I am a type III but I think my time of onset was a lot younger.... somewhere around 18 months. Randy - I have a similar problem with getting the wheelchair out of the car. > > sounds a lot like me too when i was younger.. but i finally realized too that its a lot easier to just be up front about it. but, yeah, seeing people i haven't seen in a long time is still weird for me. Robin > Re: Introduction > > > For the most part I > ignored it, made stupid/lame excuses for why I couldn't participate in > the few > activities that I was unable to do. Didn't tell anyone outside my > immediate > family that I had SMA. > > Boy, does that sound familar. My guess is that most type III's have a > similar story. In High School, the only thing I couldn't pull off were > hurdles in Gym class. I totally hid it from everyone until I was at > least 30. That's how I dealt with it(denial) In a way, it was my way of > beating the illness and I think I kicked it's ass. Now , at 52 there's > no more denial. I found it's best to just explain it right away. > Certainly can't hide it. > But one of the tougher things I've had to do lately was get together > with some old buddies who hadn't seen me in quite awhile. I still have > a really tough time with that. I tend to avoid those situations with > all but a few freinds. > Anyway, welcome to the group. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 sounds a lot like me too when i was younger.. but i finally realized too that its a lot easier to just be up front about it. but, yeah, seeing people i haven't seen in a long time is still weird for me. Robin Re: Introduction For the most part I ignored it, made stupid/lame excuses for why I couldn't participate in the few activities that I was unable to do. Didn't tell anyone outside my immediate family that I had SMA. Boy, does that sound familar. My guess is that most type III's have a similar story. In High School, the only thing I couldn't pull off were hurdles in Gym class. I totally hid it from everyone until I was at least 30. That's how I dealt with it(denial) In a way, it was my way of beating the illness and I think I kicked it's ass. Now , at 52 there's no more denial. I found it's best to just explain it right away. Certainly can't hide it. But one of the tougher things I've had to do lately was get together with some old buddies who hadn't seen me in quite awhile. I still have a really tough time with that. I tend to avoid those situations with all but a few freinds. Anyway, welcome to the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 Hi: Welcome to the group - I think the group is one you'll find to be pretty cool - helpful, informative, and with widely varying opinions occasionally on various topics (which is good). Our son Bryce - age 7 - has Type 3 and his sister is - age 5 tested positive for the homozygous SMN1 deletion but is asymptomatic (no symptoms). My wife and I live near Cleveland, OH. I'm just wondering why recent encounters with old friends seem weird or even avoided? Do your old friends reactions seem weird - or do you feel weird in having to offer explainations? Is it a situation where an old friend see you using a scooter or wheelchair and doesn't understand why? Just trying to understand the emotional aspect here a little better. Bryce was diagnosed at around 3 & 1/2 and walks very well - can negotiate stairs (and though they're a challenge - he still will occasionally inform us that when he's a grown up, he's " gonna have a house with all kinds of stairs " - he wasn't really happy we moved from 'his' 2-story house to our current accessible 1-story home 2 years ago). Though we rarely discuss 'life with SMA' per say, my wife and I do openly talk about SMA - and Bryce understands he has SMA - which he doesn't necessarilly assign any negative feelings to at all (at least to me thus far). He's active, very social, quite the ladies' man, all in all - a pretty happy kid (and I'm immensely proud of him in every way - errr uhhh, except when he doesn't listen to me- ) I'm fairly certain Bryce has only thus far asked or me about SMA -in one way or another- on 3 separate occasions over the past two years. And each time he has asked a pointed question - it practically destroys me - even though he asks such a question with a smile on his face. I'd imagine those questions may happen more often - and I want to be able to answer his questions as openly and honestly (and age-appropriately) as possible. Hopefully I can continue to gleen such knowledge from all the adults with SMA who are part of this group. Thanks for joining - Mitch --- Robin <roses4u@...> wrote: > sounds a lot like me too when i was younger.. but i > finally realized too that its a lot easier to just > be up front about it. but, yeah, seeing people i > haven't seen in a long time is still weird for me. > Robin > Re: Introduction > > > For the most part I > ignored it, made stupid/lame excuses for why I > couldn't participate in > the few > activities that I was unable to do. Didn't tell > anyone outside my > immediate > family that I had SMA. > > Boy, does that sound familar. My guess is that > most type III's have a > similar story. In High School, the only thing I > couldn't pull off were > hurdles in Gym class. I totally hid it from > everyone until I was at > least 30. That's how I dealt with it(denial) In a > way, it was my way of > beating the illness and I think I kicked it's ass. > Now , at 52 there's > no more denial. I found it's best to just explain > it right away. > Certainly can't hide it. > But one of the tougher things I've had to do > lately was get together > with some old buddies who hadn't seen me in quite > awhile. I still have > a really tough time with that. I tend to avoid > those situations with > all but a few freinds. > Anyway, welcome to the group. > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 > I'm just wondering why recent encounters with old > friends seem weird or even avoided? Do your old > friends reactions seem weird - or do you feel weird in > having to offer explainations? Is it a situation > where an old friend see you using a scooter or > wheelchair and doesn't understand why? Just trying to > understand the emotional aspect here a little better. > Many of my friends picture me as an normal, active, outdoorsy guy. That's how I grew up... normal almost. When I see someone I haven't seen in a long time (10 + years) it's tough to discribe how you feel. It's pretty typical to feel some sadness for a person in a wheelchair. Right or wrong, it happens and we feel it.It's awkward. As an adolesenct we try hard to fit in and not be to different and I think a part of that never goes away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 It is a small world. I live in OH as well. I do not like seeing old friends because I do not want to explain why I was walking almost everywhere I wanted to go twelve years ago and now I am not. I may have told them I have SMA but people even some doctors have never really heard of it and do not know how I will change. (I did not know how I would change either) Strangers, other parents, family members will make comments all the time asking me what is wrong with me or evaluate my walking ability for that day. It is exhausting. I really just do not know what to say to them anymore. With that said, I have met people who are not fazed a bit by how I walk or whether I walk one day or use a wheelchair the next. I cherish those friendships. , <mongomustgolf@...> wrote: > > Hi: > > Welcome to the group - I think the group is one you'll > find to be pretty cool - helpful, informative, and > with widely varying opinions occasionally on various > topics (which is good). Our son Bryce - age 7 - has > Type 3 and his sister is - age 5 tested positive > for the homozygous SMN1 deletion but is asymptomatic > (no symptoms). My wife and I live near > Cleveland, OH. > > I'm just wondering why recent encounters with old > friends seem weird or even avoided? Do your old > friends reactions seem weird - or do you feel weird in > having to offer explainations? Is it a situation > where an old friend see you using a scooter or > wheelchair and doesn't understand why? Just trying to > understand the emotional aspect here a little better. > > Bryce was diagnosed at around 3 & 1/2 and walks very > well - can negotiate stairs (and though they're a > challenge - he still will occasionally inform us that > when he's a grown up, he's " gonna have a house with > all kinds of stairs " - he wasn't really happy we moved > from 'his' 2-story house to our current accessible > 1-story home 2 years ago). Though we rarely discuss > 'life with SMA' per say, my wife and I do openly talk > about SMA - and Bryce understands he has SMA - which > he doesn't necessarilly assign any negative feelings > to at all (at least to me thus far). He's active, > very social, quite the ladies' man, all in all - a > pretty happy kid (and I'm immensely proud of him in > every way - errr uhhh, except when he doesn't listen > to me- ) > > I'm fairly certain Bryce has only thus far asked > or me about SMA -in one way or another- on 3 separate > occasions over the past two years. And each time he > has asked a pointed question - it practically destroys > me - even though he asks such a question with a smile > on his face. I'd imagine those questions may happen > more often - and I want to be able to answer his > questions as openly and honestly (and > age-appropriately) as possible. > > Hopefully I can continue to gleen such knowledge from > all the adults with SMA who are part of this group. > > Thanks for joining - Mitch > > > --- Robin <roses4u@...> wrote: > > > sounds a lot like me too when i was younger.. but i > > finally realized too that its a lot easier to just > > be up front about it. but, yeah, seeing people i > > haven't seen in a long time is still weird for me. > > Robin > > Re: Introduction > > > > > > For the most part I > > ignored it, made stupid/lame excuses for why I > > couldn't participate in > > the few > > activities that I was unable to do. Didn't tell > > anyone outside my > > immediate > > family that I had SMA. > > > > Boy, does that sound familar. My guess is that > > most type III's have a > > similar story. In High School, the only thing I > > couldn't pull off were > > hurdles in Gym class. I totally hid it from > > everyone until I was at > > least 30. That's how I dealt with it(denial) In a > > way, it was my way of > > beating the illness and I think I kicked it's ass. > > Now , at 52 there's > > no more denial. I found it's best to just explain > > it right away. > > Certainly can't hide it. > > But one of the tougher things I've had to do > > lately was get together > > with some old buddies who hadn't seen me in quite > > awhile. I still have > > a really tough time with that. I tend to avoid > > those situations with > > all but a few freinds. > > Anyway, welcome to the group. > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 I've heard the same hesitance to see old friends among some of my type 2 friends also. I've never felt the hesitation or reluctance to visit people or family I haven't seen in years, but I do recognize when they notice any ability I've lost. The easiest visits are the folks who are upfront about it instead of pretending not to notice. My friend Margot is perfect. She said, " Getting hard to feed yourself...just lt me know if you need a hand. " It was so easy. It was on the table and we could talk about it or not. When it's the silent treatment the burden's on me to break the ice by saying something like, " Yeah, it's gotten harder, but now I remember to ask the waiter to have the chef cut my food small " or some such coping strategy. It's annoying having to put people at ease by convincing them that I'm managing, especially when I'm struggling with adjusting to a loss myself. But I do the emotional housekeeping to avoid their uncomfortable pretending that nothing has changed. > > Many of my friends picture me as an normal, active, outdoorsy > guy. That's how I grew up... normal almost. When I see someone I > haven't seen in a long time (10 + years) it's tough to discribe how you > feel. It's pretty typical to feel some sadness for a person in a > wheelchair. Right or wrong, it happens and we feel it.It's awkward. > As an adolesenct we try hard to fit in and not be to different and I > think a part of that never goes away. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 How weird, I'm a 3 but got in a chair between 6th and 7th grade. Are all the 3s on here still walking? Mark Overson <oversonlanding@...> wrote: For the most part I ignored it, made stupid/lame excuses for why I couldn't participate in the few activities that I was unable to do. Didn't tell anyone outside my immediate family that I had SMA. Boy, does that sound familar. My guess is that most type III's have a similar story. In High School, the only thing I couldn't pull off were hurdles in Gym class. I totally hid it from everyone until I was at least 30. That's how I dealt with it(denial) In a way, it was my way of beating the illness and I think I kicked it's ass. Now , at 52 there's no more denial. I found it's best to just explain it right away. Certainly can't hide it. But one of the tougher things I've had to do lately was get together with some old buddies who hadn't seen me in quite awhile. I still have a really tough time with that. I tend to avoid those situations with all but a few freinds. Anyway, welcome to the group. A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 For me, they don't act different. I am kind of embarrassed of how I look now, especially when moving to reach something or adjust sitting or whatever. But I'll get over it... I hope. <mongomustgolf@...> wrote: I'm just wondering why recent encounters with old friends seem weird or even avoided? Do your old friends reactions seem weird - or do you feel weird in having to offer explainations? Is it a situation where an old friend see you using a scooter or wheelchair and doesn't understand why? Just trying to understand the emotional aspect here a little better. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2007 Report Share Posted October 17, 2007 I am but just barely. When I was diagnosed at around 15 I was told I would not be able to walk by age 30. I did pretty good until about my mid-20's, started using a chair part time around 30 and now that I'm 37, I don't think I have much more walking in me. -------------- Original message -------------- From: Joy <j0yeuxx@...> How weird, I'm a 3 but got in a chair between 6th and 7th grade. Are all the 3s on here still walking? Mark Overson <oversonlanding@...> wrote: For the most part I ignored it, made stupid/lame excuses for why I couldn't participate in the few activities that I was unable to do. Didn't tell anyone outside my immediate family that I had SMA. Boy, does that sound familar. My guess is that most type III's have a similar story. In High School, the only thing I couldn't pull off were hurdles in Gym class. I totally hid it from everyone until I was at least 30. That's how I dealt with it(denial) In a way, it was my way of beating the illness and I think I kicked it's ass. Now , at 52 there's no more denial. I found it's best to just explain it right away. Certainly can't hide it. But one of the tougher things I've had to do lately was get together with some old buddies who hadn't seen me in quite awhile. I still have a really tough time with that. I tend to avoid those situations with all but a few freinds. Anyway, welcome to the group. A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 I am a type 3 at 59 years old. I only walked between age 5 to 16. Been using a chair since then. Power chair since age 22. Lainie tshindle@... wrote: I am but just barely. When I was diagnosed at around 15 I was told I would not be able to walk by age 30. I did pretty good until about my mid-20's, started using a chair part time around 30 and now that I'm 37, I don't think I have much more walking in me. -------------- Original message -------------- From: Joy How weird, I'm a 3 but got in a chair between 6th and 7th grade. Are all the 3s on here still walking? Mark Overson wrote: For the most part I ignored it, made stupid/lame excuses for why I couldn't participate in the few activities that I was unable to do. Didn't tell anyone outside my immediate family that I had SMA. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 I am but it is very limited. My walking ability seems to be affected by what I eat, my weight, how hot it is outside etc...... > For the most part I > ignored it, made stupid/lame excuses for why I couldn't participate in > the few > activities that I was unable to do. Didn't tell anyone outside my > immediate > family that I had SMA. > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 I am a 3. I am 52 yrs old. In a scooter since age 42- just got a power chair this year. Peace, Beth Re: Re: Introduction How weird, I'm a 3 but got in a chair between 6th and 7th grade. Are all the 3s on here still walking? Mark Overson <oversonlanding@...> wrote: For the most part I ignored it, made stupid/lame excuses for why I couldn't participate in the few activities that I was unable to do. Didn't tell anyone outside my immediate family that I had SMA. Boy, does that sound familar. My guess is that most type III's have a similar story. In High School, the only thing I couldn't pull off were hurdles in Gym class. I totally hid it from everyone until I was at least 30. That's how I dealt with it(denial) In a way, it was my way of beating the illness and I think I kicked it's ass. Now , at 52 there's no more denial. I found it's best to just explain it right away. Certainly can't hide it. But one of the tougher things I've had to do lately was get together with some old buddies who hadn't seen me in quite awhile. I still have a really tough time with that. I tend to avoid those situations with all but a few freinds. Anyway, welcome to the group. A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Robin- Yes, your reply was very helpful! Thank you and the others for sharing your thoughts/feelings on this! Mitch --- Robin <roses4u@...> wrote: > Mitch, All through high school, I did not yet have > any symptoms of SMA. So to see people I haven't seen > since then, and now I use a scooter, feels strange, > I guess for a lot of reasons. It's hard to explain, > but it's just an awkward feeling to run into people > who knew me when I could do anythiing I wanted. > Physically, I was a completely different person > then, and like some of the others have explained, > when my symptoms first showed up ( age 19), I > ignored them. For quite awhile. I, too , made > excuses for things I had trouble with. Only in maybe > the last 8 or so years(43 years old now) have I been > more open and not so embarrassed about my SMA. I > only got my scooter a year and a half ago and it > took awhile for me to feel really comfortable taking > it places. Now I take it everywhere and I love it a > ton. I've come a long way emotionally, but it was a > long road. I must admit, I'm much happier now, > because not hiding it is so much easier. Anyway, I > hope that answers your questions. Robin > > Re: Introduction > > > > > > For the most part I > > ignored it, made stupid/lame excuses for why I > > couldn't participate in > > the few > > activities that I was unable to do. Didn't tell > > anyone outside my > > immediate > > family that I had SMA. > > > > Boy, does that sound familar. My guess is that > > most type III's have a > > similar story. In High School, the only thing I > > couldn't pull off were > > hurdles in Gym class. I totally hid it from > > everyone until I was at > > least 30. That's how I dealt with it(denial) In > a > > way, it was my way of > > beating the illness and I think I kicked it's > ass. > > Now , at 52 there's > > no more denial. I found it's best to just > explain > > it right away. > > Certainly can't hide it. > > But one of the tougher things I've had to do > > lately was get together > > with some old buddies who hadn't seen me in > quite > > awhile. I still have > > a really tough time with that. I tend to avoid > > those situations with > > all but a few freinds. > > Anyway, welcome to the group. > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Where in OH do you live? I've lived most of my life in NE Ohio (Cleveland/Akron area) - but went to college near Cincinnati - and have spend countless weekends over the years in our state's capital. Regarding walking, riding, etc. - prior to SMA entering my family's lives 4 years ago, I probably had a completely different view/understanding (more like a lack thereof) about walking versus using a wheelchair. Being the highly enlightened individual that I now am (hardly) - I now just view either as a means to end - a mode of transportation. In the past I would have to admit " fearing " what a wheelchair could me to me - but now I am quite thankful mobility devices like wheelchairs and scooters will someday continue to allow my son to maintain his independence. My son has been riding horses now at a TRC (Therapeutic Riding Center) for 3 + years (and he's awesome at it) - anyway, the TRC has assisted riding programs, unassisted riding programs, and carted-horse riding programs for kids who use wheelchairs. At one of the year-end award ceremonies, Bryce (age 7) - saw a little boy similar in age to him in a wheelchair (the boy has CP - a very bright and happy kid from what I could tell) - and Bryce asked him why he uses a wheelchair - to which he responded - " it's just how I get around " - which was good with Bryce's - and the two went on to talk about their horses, trophies, etc. While " most " people won't ever " get it " - more and more hopefully will. My son " got it " at age 5. I didn't " get it " till I was 35. Mitch > Re: Introduction > > > > > > > > > For the most part I > > > ignored it, made stupid/lame excuses for why I > > > couldn't participate in > > > the few > > > activities that I was unable to do. Didn't > tell > > > anyone outside my > > > immediate > > > family that I had SMA. > > > > > > Boy, does that sound familar. My guess is that > > > most type III's have a > > > similar story. In High School, the only thing > I > > > couldn't pull off were > > > hurdles in Gym class. I totally hid it from > > > everyone until I was at > > > least 30. That's how I dealt with it(denial) > In a > > > way, it was my way of > > > beating the illness and I think I kicked it's > ass. > > > Now , at 52 there's > > > no more denial. I found it's best to just > explain > > > it right away. > > > Certainly can't hide it. > > > But one of the tougher things I've had to do > > > lately was get together > > > with some old buddies who hadn't seen me in > quite > > > awhile. I still have > > > a really tough time with that. I tend to avoid > > > those situations with > > > all but a few freinds. > > > Anyway, welcome to the group. > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Mitch, All through high school, I did not yet have any symptoms of SMA. So to see people I haven't seen since then, and now I use a scooter, feels strange, I guess for a lot of reasons. It's hard to explain, but it's just an awkward feeling to run into people who knew me when I could do anythiing I wanted. Physically, I was a completely different person then, and like some of the others have explained, when my symptoms first showed up ( age 19), I ignored them. For quite awhile. I, too , made excuses for things I had trouble with. Only in maybe the last 8 or so years(43 years old now) have I been more open and not so embarrassed about my SMA. I only got my scooter a year and a half ago and it took awhile for me to feel really comfortable taking it places. Now I take it everywhere and I love it a ton. I've come a long way emotionally, but it was a long road. I must admit, I'm much happier now, because not hiding it is so much easier. Anyway, I hope that answers your questions. Robin Re: Introduction > > > For the most part I > ignored it, made stupid/lame excuses for why I > couldn't participate in > the few > activities that I was unable to do. Didn't tell > anyone outside my > immediate > family that I had SMA. > > Boy, does that sound familar. My guess is that > most type III's have a > similar story. In High School, the only thing I > couldn't pull off were > hurdles in Gym class. I totally hid it from > everyone until I was at > least 30. That's how I dealt with it(denial) In a > way, it was my way of > beating the illness and I think I kicked it's ass. > Now , at 52 there's > no more denial. I found it's best to just explain > it right away. > Certainly can't hide it. > But one of the tougher things I've had to do > lately was get together > with some old buddies who hadn't seen me in quite > awhile. I still have > a really tough time with that. I tend to avoid > those situations with > all but a few freinds. > Anyway, welcome to the group. > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Mark, well said!! Robin Re: Introduction > I'm just wondering why recent encounters with old > friends seem weird or even avoided? Do your old > friends reactions seem weird - or do you feel weird in > having to offer explainations? Is it a situation > where an old friend see you using a scooter or > wheelchair and doesn't understand why? Just trying to > understand the emotional aspect here a little better. > Many of my friends picture me as an normal, active, outdoorsy guy. That's how I grew up... normal almost. When I see someone I haven't seen in a long time (10 + years) it's tough to discribe how you feel. It's pretty typical to feel some sadness for a person in a wheelchair. Right or wrong, it happens and we feel it.It's awkward. As an adolesenct we try hard to fit in and not be to different and I think a part of that never goes away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 wow, also very well said!! you guys feel a lot of what I do. Robin Re: Introduction > > > > > > For the most part I > > ignored it, made stupid/lame excuses for why I > > couldn't participate in > > the few > > activities that I was unable to do. Didn't tell > > anyone outside my > > immediate > > family that I had SMA. > > > > Boy, does that sound familar. My guess is that > > most type III's have a > > similar story. In High School, the only thing I > > couldn't pull off were > > hurdles in Gym class. I totally hid it from > > everyone until I was at > > least 30. That's how I dealt with it(denial) In a > > way, it was my way of > > beating the illness and I think I kicked it's ass. > > Now , at 52 there's > > no more denial. I found it's best to just explain > > it right away. > > Certainly can't hide it. > > But one of the tougher things I've had to do > > lately was get together > > with some old buddies who hadn't seen me in quite > > awhile. I still have > > a really tough time with that. I tend to avoid > > those situations with > > all but a few freinds. > > Anyway, welcome to the group. > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 > For the most part I > ignored it, made stupid/lame excuses for why I couldn't participate in > the few > activities that I was unable to do. Didn't tell anyone outside my > immediate > family that I had SMA. > > > > Boy, does that sound familar. My guess is that most type III's have a > similar story. In High School, the only thing I couldn't pull off were > hurdles in Gym class. I totally hid it from everyone until I was at > least 30. That's how I dealt with it(denial) In a way, it was my way of > beating the illness and I think I kicked it's ass. Now , at 52 there's > no more denial. I found it's best to just explain it right away. > Certainly can't hide it. > But one of the tougher things I've had to do lately was get together > with some old buddies who hadn't seen me in quite awhile. I still have > a really tough time with that. I tend to avoid those situations with > all but a few freinds. > Anyway, welcome to the group. > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 > > > > > > > sounds a lot like me too when i was younger.. > > but i > > > > finally realized too that its a lot easier to > > just > > > > be up front about it. but, yeah, seeing people > > i > > > > haven't seen in a long time is still weird for > > me. > > > > Robin > > > > Re: Introduction > > > > > > > > > > > > For the most part I > > > > ignored it, made stupid/lame excuses for why I > > > > couldn't participate in > > > > the few > > > > activities that I was unable to do. Didn't > > tell > > > > anyone outside my > > > > immediate > > > > family that I had SMA. > > > > > > > > Boy, does that sound familar. My guess is that > > > > most type III's have a > > > > similar story. In High School, the only thing > > I > > > > couldn't pull off were > > > > hurdles in Gym class. I totally hid it from > > > > everyone until I was at > > > > least 30. That's how I dealt with it(denial) > > In a > > > > way, it was my way of > > > > beating the illness and I think I kicked it's > > ass. > > > > Now , at 52 there's > > > > no more denial. I found it's best to just > > explain > > > > it right away. > > > > Certainly can't hide it. > > > > But one of the tougher things I've had to do > > > > lately was get together > > > > with some old buddies who hadn't seen me in > > quite > > > > awhile. I still have > > > > a really tough time with that. I tend to avoid > > > > those situations with > > > > all but a few freinds. > > > > Anyway, welcome to the group. > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > > removed] > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 I have type 3 and haven't walked since I was about 13. I am now 37. I used a chair for a year or so before I got my power chair. So, I have used a power chair since age 15. I think the age they walk till may just vary for type 3's. > For the most part I > ignored it, made stupid/lame excuses for why I couldn't participate in > the few > activities that I was unable to do. Didn't tell anyone outside my > immediate > family that I had SMA. > > > > Boy, does that sound familar. My guess is that most type III's have a > similar story. In High School, the only thing I couldn't pull off were > hurdles in Gym class. I totally hid it from everyone until I was at > least 30. That's how I dealt with it(denial) In a way, it was my way of > beating the illness and I think I kicked it's ass. Now , at 52 there's > no more denial. I found it's best to just explain it right away. > Certainly can't hide it. > But one of the tougher things I've had to do lately was get together > with some old buddies who hadn't seen me in quite awhile. I still have > a really tough time with that. I tend to avoid those situations with > all but a few freinds. > Anyway, welcome to the group. > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 --- ida_iwanier <ida_iwanier@...> wrote: > Hi, > > I'm new to the group. I am a novice. I have not > tried yet to make > perfumes, but have always been interested. I saw > this group and > thought this would be a great place to learn. > > Ida ********************************************* Hi Ida Welcome to the group and thanks for introducing yourself! This definitely is a great place to learn and the archives (i.e. messages on the home page that you can search) are chock full o' valuable information. I also suggest that you get Mandy Aftel's book, Sense and Sensibilities, as a place to get some basic info to get you started. She will teach you how to make solid perfumes that you will really enjoy. Once you have mastered solid perfumes you can advance to alcohol-based perfumes that are more complex and a little less forgiving. At that point you will want to get one of her other books, Essence and Alchemy, which gets into more technical details. Happy blending! Patty, NP Moderator ________________________________________________________________________________\ ____ Don't let your dream ride pass you by. Make it a reality with Autos. http://autos./index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 edited to correct topposting: > Hi Ida > Once you have mastered solid perfumes you can advance > to alcohol-based perfumes that are more complex and a > little less forgiving. At that point you will want to > get one of her other books, Essence and Alchemy, which > gets into more technical details. > > Happy blending! > > Patty, NP Moderator Thanks, Patty. That is great to have a place to start. I was trying to locate a little booklet that Caswell-Massey offered in the 1970s (dates me, doesn't it?), " Caswell-Massey's Book of Perfumes and Fragrances " , but it is out of print, and I haven't found it for sale anywhere. More that likely the book you are recommending " Sense and Sensibilities " is a better source anyway. Tnanks so much for welcoming me into the group. I can tell from the posts I've read already that I will learn a lot from this group. Ida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2007 Report Share Posted October 18, 2007 Wow. I never thought I would meet such a community. I am a type 3, age 48. I was diagnosed at 15 months. As a child I walked on my tiptoes, and I could never really run, walk for long distances or climb things. I'm still walking but the last year has been really tough. and if I look back, there has been quite a decline in the last 3 (when my hamsrings went). I started using a scooter in university, so I could get from building to building. Then I didn't use one again until I was 38...and this time it was so I could get from building to building at work. There are days when I am so thankful for my scooter...because in many ways it gives me even more freedom. I also use a small, folding manual wheelchair when I travel, and it has meant that I can go anywhere! Of course, it helps that I have a strong (physically and emotionally), supportive husband. I still drive....absolutely adore it! I am quite short, and drive a VW Jetta, which has relatively high seats. I can pull myself out of the car by hanging on the door frame, and I do a bizarre one-legged kick-back to get myself into the car (maybe I will post a picture later!). I pretty much live in wide-legged trousers now, because I can pull my left leg into the car by grabbing the pant leg. Isn't it amazing how we find ways to adapt? And don't you find that your definition of what's normal changes all the time? I had a bad fall in a shower two years ago. Broke my shoulder. Having the arm immobilized for 8 weeks really affected me. Had another bad fall this year (tripped by one of my two lovely cats!), but this time only a sprained ankle. I'm finding that falls really affect my confidence in staying upright, and this seems to make me more afraid to walk...so it becomes a vicious circle. I've also had a condition, apparently unrelated, over the last 15 years...called Benign Positional Vertigo. I used to get periods of dizzy spells that would last for up to two weeks. Now, it's more like a sensation that I am going to tip over at any moment. Does anyone else have dizziness or wooziness? Anyway, I've decided to go for broke and try and do everything I can to be as strong as possible. Have been chatting with a terrific SMA researcher based in my home town, and he says that exercise is really, really important. Recent studies done on SMA2 mice have shown fantastic results by having them do weight bearing exercise (increased life expectancy and great increases in strength). When I turned 40, I started working out with a personal trainer (who had spina bifida and specialized in adapted fitness), and the results were great. More stamina, stronger muscles in arms and legs, and I felt great.....but I only kept it up for about 5 years...then my job got really intense, and I found excuses, and gradually let things slide. Well, I'm starting up again...more gradually this time. First is to get my confidence back, and start walking more. Then it will be more intense exercise. Sorry for the length of this post, but I'm really happy to have found this group. I hope we can learn from each other. yazmine ________________________________ From: [mailto: ] On Behalf Of Mark Overson Sent: October 18, 2007 11:58 AM Subject: Re: Introduction > For the most part I > ignored it, made stupid/lame excuses for why I couldn't participate in > the few > activities that I was unable to do. Didn't tell anyone outside my > immediate > family that I had SMA. > > > > Boy, does that sound familar. My guess is that most type III's have a > similar story. In High School, the only thing I couldn't pull off were > hurdles in Gym class. I totally hid it from everyone until I was at > least 30. That's how I dealt with it(denial) In a way, it was my way of > beating the illness and I think I kicked it's ass. Now , at 52 there's > no more denial. I found it's best to just explain it right away. > Certainly can't hide it. > But one of the tougher things I've had to do lately was get together > with some old buddies who hadn't seen me in quite awhile. I still have > a really tough time with that. I tend to avoid those situations with > all but a few freinds. > Anyway, welcome to the group. > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: <mailto:%40> > Subscribe: -subscribe <mailto:-subscribe%40> > Unsubscribe: -unsubscribe <mailto:-unsubscribe%40> > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
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