Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hi Robin, No offense taken and I'm sorry if I came off too negative, I have just been having a very rough time lately. The fact that winter is coming is always depressing, too. I have tried to do all the right things. I went to a 2 year tech school and got a good job and bought a house 7 years ago. I was in an accident back in April that set me back a little bit and totalled my truck that was paid off, so I have a slightly newer one now. I was engaged long ago but was cheated on twice so that put me off relationships for a long time. I have had a couple long-term relationships that started online and looked like they were going somewhere. Both times they were going to move here to be with me. One of them decided that realistically she could not leave where she was. The other one...I found out she had kids she never told me about and was using me as a way to up and leave them. Long story. I did try dating locally, too. Had some success with dating but nothing that laste d more than a few months. Ever since my accident it's a lot harder to go out and I need a lot more help when I do. My best friend is a nurse and she used to help me a lot but she moved about 1500 miles away a few years ago. So I have been trying. I'm not ready to give up but it has been a very trying 6 months. I try to do whatever I can to get rested and feel better but nothing has been working...hence my downer of an email...lol. Tom --------- Re: House on Fox > Thank you Jenn (and Terry, too), that's exactly what I was feeling. I am > happy on the outside most of the time and I am very stubborn and driven > and have been told a few times I shouldn't be able to do the things I do, > it's only my stubborness and logic that keeps me going. My reality, > though, is that I am not happy most of time. I have a lot of dark days. > I live alone and it's a struggle. I have had evaluations and told there's > nothing else out there to help me. I don't have any friends or co-workers > are disabled, so I feel alone a lot of the time. I have a couple friends > I see once every week or two. My brothers both live out of town. My dad > is gone and my mom has had 2 cancer scares, so it's conceivable that I > could have no family nearby in the not-too-distant future. I have said to > myself that I was tired of being trapped in this body many times. Yes, I > have wished I was dead more than once. I smile and joke a lot but outside > of work I mostly just home alone in bed > and it really gets to a person after a while. I know it was just a TV > show and one character could never represent all of us at the same time, > but I identified quite a bit with that character. > Tom > > -------------- Original message -------------- > From: Jenn Malatesta <nekrosys@...> > OK, once again, I guess I'm the weird one out. I know there are > plenty of times, when I've been very sick and hardly able to breath, > when I've said the exact same words the character did on the show. I > have accomplished stuff in my life, but there are times when I am so > completely *over* having SMA that it hurts. It may have been a dark > and dreary portrayal, but that has been my exact reality when I was > in similar situations. > > Jenn Malatesta > nekrosys@... > nekrosys.net > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Actually I might have something worked out for that. I had a friend renting my spare bedroom from me but he moved out when my last girlfriend was planning on moving in. By the time that all fell apart he had signed a lease on an apartment but that lease will soon be up and I offered him the room again, so we'll see. Luckily he has always been a great friend and even after moving out he still helps with mowing the lawn, taking out trash, etc. I hope it all works out before too long. It's scary when it's winter and it's snowing and I have to try to get out of my truck and into my house after work with no one around. --------- Re: House on Fox > >> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I am >> happy on the outside most of the time and I am very stubborn and driven >> and have been told a few times I shouldn't be able to do the things I do, >> it's only my stubborness and logic that keeps me going. My reality, >> though, is that I am not happy most of time. I have a lot of dark days. >> I live alone and it's a struggle. I have had evaluations and told there's >> nothing else out there to help me. I don't have any friends or co-workers >> are disabled, so I feel alone a lot of the time. I have a couple friends >> I see once every week or two. My brothers both live out of town. My dad >> is gone and my mom has had 2 cancer scares, so it's conceivable that I >> could have no family nearby in the not-too-distant future. I have said to >> myself that I was tired of being trapped in this body many times. Yes, I >> have wished I was dead more than once. I smile and joke a lot but outside >> of work I mostly just home alone in bed >> and it really gets to a person after a while. I know it was just a TV >> show and one character could never represent all of us at the same time, >> but I identified quite a bit with that character. >> Tom >> >> -------------- Original message -------------- >> From: Jenn Malatesta <nekrosys@...> >> OK, once again, I guess I'm the weird one out. I know there are >> plenty of times, when I've been very sick and hardly able to breath, >> when I've said the exact same words the character did on the show. I >> have accomplished stuff in my life, but there are times when I am so >> completely *over* having SMA that it hurts. It may have been a dark >> and dreary portrayal, but that has been my exact reality when I was >> in similar situations. >> >> Jenn Malatesta >> nekrosys@... >> nekrosys.net >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hi Tom, No need to apologize for being negative. It's so easy to get into a slump and start feeling negative about things. You've had some tough luck and things can get so frustrating. You need a good friend, though, to have around. Easier said than done, I know. I know I already mentioned this, but what about getting a roommate? Then you'd have someone there, who maybe could become a good friend and who could also introduce you to his friends. Just a suggestion, but then you wouldn't be alone. Robin Re: House on Fox > >> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I am >> happy on the outside most of the time and I am very stubborn and driven >> and have been told a few times I shouldn't be able to do the things I do, >> it's only my stubborness and logic that keeps me going. My reality, >> though, is that I am not happy most of time. I have a lot of dark days. >> I live alone and it's a struggle. I have had evaluations and told there's >> nothing else out there to help me. I don't have any friends or co-workers >> are disabled, so I feel alone a lot of the time. I have a couple friends >> I see once every week or two. My brothers both live out of town. My dad >> is gone and my mom has had 2 cancer scares, so it's conceivable that I >> could have no family nearby in the not-too-distant future. I have said to >> myself that I was tired of being trapped in this body many times. Yes, I >> have wished I was dead more than once. I smile and joke a lot but outside >> of work I mostly just home alone in bed >> and it really gets to a person after a while. I know it was just a TV >> show and one character could never represent all of us at the same time, >> but I identified quite a bit with that character. >> Tom >> >> -------------- Original message -------------- >> From: Jenn Malatesta <nekrosys@...> >> OK, once again, I guess I'm the weird one out. I know there are >> plenty of times, when I've been very sick and hardly able to breath, >> when I've said the exact same words the character did on the show. I >> have accomplished stuff in my life, but there are times when I am so >> completely *over* having SMA that it hurts. It may have been a dark >> and dreary portrayal, but that has been my exact reality when I was >> in similar situations. >> >> Jenn Malatesta >> nekrosys@... >> nekrosys.net >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 That's really nice you have a friend like that. I hope he moves back in with you. I know all about that scary feeling. I'm terrified of falling when no one's around who can help me up. Do you fall when you're at home? Re: House on Fox >> >>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I am >>> happy on the outside most of the time and I am very stubborn and driven >>> and have been told a few times I shouldn't be able to do the things I >>> do, >>> it's only my stubborness and logic that keeps me going. My reality, >>> though, is that I am not happy most of time. I have a lot of dark days. >>> I live alone and it's a struggle. I have had evaluations and told >>> there's >>> nothing else out there to help me. I don't have any friends or >>> co-workers >>> are disabled, so I feel alone a lot of the time. I have a couple friends >>> I see once every week or two. My brothers both live out of town. My dad >>> is gone and my mom has had 2 cancer scares, so it's conceivable that I >>> could have no family nearby in the not-too-distant future. I have said >>> to >>> myself that I was tired of being trapped in this body many times. Yes, I >>> have wished I was dead more than once. I smile and joke a lot but >>> outside >>> of work I mostly just home alone in bed >>> and it really gets to a person after a while. I know it was just a TV >>> show and one character could never represent all of us at the same time, >>> but I identified quite a bit with that character. >>> Tom >>> >>> -------------- Original message -------------- >>> From: Jenn Malatesta <nekrosys@...> >>> OK, once again, I guess I'm the weird one out. I know there are >>> plenty of times, when I've been very sick and hardly able to breath, >>> when I've said the exact same words the character did on the show. I >>> have accomplished stuff in my life, but there are times when I am so >>> completely *over* having SMA that it hurts. It may have been a dark >>> and dreary portrayal, but that has been my exact reality when I was >>> in similar situations. >>> >>> Jenn Malatesta >>> nekrosys@... >>> nekrosys.net >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 I have had a couple falls. I can't get up on my own. One time my neighbor was home and she rounded up a couple neighborhood kids to pick me up. One time the mailman just happened to be on my street and helped. I have been really lucky that I was never really hurt bad and was always able to get the phone out of my pocket to call for help. I know it is very scary to think what could happen if I was really hurt or couldnt get to the phone. I fell at work not long ago and pinned my left arm underneath myself and couldnt get the phone out...but luckily I was found before long. --------- Re: House on Fox >> >>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I am >>> happy on the outside most of the time and I am very stubborn and driven >>> and have been told a few times I shouldn't be able to do the things I >>> do, >>> it's only my stubborness and logic that keeps me going. My reality, >>> though, is that I am not happy most of time. I have a lot of dark days. >>> I live alone and it's a struggle. I have had evaluations and told >>> there's >>> nothing else out there to help me. I don't have any friends or >>> co-workers >>> are disabled, so I feel alone a lot of the time. I have a couple friends >>> I see once every week or two. My brothers both live out of town. My dad >>> is gone and my mom has had 2 cancer scares, so it's conceivable that I >>> could have no family nearby in the not-too-distant future. I have said >>> to >>> myself that I was tired of being trapped in this body many times. Yes, I >>> have wished I was dead more than once. I smile and joke a lot but >>> outside >>> of work I mostly just home alone in bed >>> and it really gets to a person after a while. I know it was just a TV >>> show and one character could never represent all of us at the same time, >>> but I identified quite a bit with that character. >>> Tom >>> >>> -------------- Original message -------------- >>> From: Jenn Malatesta <nekrosys@...> >>> OK, once again, I guess I'm the weird one out. I know there are >>> plenty of times, when I've been very sick and hardly able to breath, >>> when I've said the exact same words the character did on the show. I >>> have accomplished stuff in my life, but there are times when I am so >>> completely *over* having SMA that it hurts. It may have been a dark >>> and dreary portrayal, but that has been my exact reality when I was >>> in similar situations. >>> >>> Jenn Malatesta >>> nekrosys@... >>> nekrosys.net >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 There have been times where I had to get off the road quickly and sit for a while because my leg or arms quit on me. That can be scary. My problem lately has been getting out of my truck. I had an incident a few months ago where i was trying to get out and fell. My right hand slipped down into the armrest and my left hand was on the ground. It was so painful. 99% of the time I am driving alone, I was lucky that I had someone with me that time or I think I would have been hanging like that until something broke...either the arm rest or my wrist. At work I have a couple guys that come out and stand by while I'm getting out but at home I'm on my own. Yeah, falling is the worst part for me, too. I'm sorry to hear you can't drive anymore, that must be really hard. I know how hard it is to find a vehicle I can get into and out of on my own. After my accident my boss drove me around to about 10 different rental places. I tried one or two vehicles at each one and not one worked for me. I found another used Tacoma similar to the one I wrecked and bought that. I'm with you on winter, too. I cannot put on a heavy coat or move once I have one on, my arms are just too weak, so I just tough it out. --------- Re: House on Fox >>> >>>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I >>>> am >>>> happy on the outside most of the time and I am very stubborn and driven >>>> and have been told a few times I shouldn't be able to do the things I >>>> do, >>>> it's only my stubborness and logic that keeps me going. My reality, >>>> though, is that I am not happy most of time. I have a lot of dark days. >>>> I live alone and it's a struggle. I have had evaluations and told >>>> there's >>>> nothing else out there to help me. I don't have any friends or >>>> co-workers >>>> are disabled, so I feel alone a lot of the time. I have a couple >>>> friends >>>> I see once every week or two. My brothers both live out of town. My dad >>>> is gone and my mom has had 2 cancer scares, so it's conceivable that I >>>> could have no family nearby in the not-too-distant future. I have said >>>> to >>>> myself that I was tired of being trapped in this body many times. Yes, >>>> I >>>> have wished I was dead more than once. I smile and joke a lot but >>>> outside >>>> of work I mostly just home alone in bed >>>> and it really gets to a person after a while. I know it was just a TV >>>> show and one character could never represent all of us at the same >>>> time, >>>> but I identified quite a bit with that character. >>>> Tom >>>> >>>> -------------- Original message -------------- >>>> From: Jenn Malatesta <nekrosys@...> >>>> OK, once again, I guess I'm the weird one out. I know there are >>>> plenty of times, when I've been very sick and hardly able to breath, >>>> when I've said the exact same words the character did on the show. I >>>> have accomplished stuff in my life, but there are times when I am so >>>> completely *over* having SMA that it hurts. It may have been a dark >>>> and dreary portrayal, but that has been my exact reality when I was >>>> in similar situations. >>>> >>>> Jenn Malatesta >>>> nekrosys@... >>>> nekrosys.net >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 I can't get up on my own either and there have been times when I've had to wait awhile for someone to find me. For me, falling is one of the worst parts of this disability. It scares the heck out of me and it's embarrassing on top of it. Although, lately, not being able to get into my car so I can drive has become a major inconvenience. Oh well. Is it still easy for you to drive? Are you ever scared about or unsure of your driving abilities? Now that winter is coming, I probably wouldn't want to drive anyways. I hate the winter and feel 10 times worse than in the summer when it's hot. Re: House on Fox >>> >>>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I >>>> am >>>> happy on the outside most of the time and I am very stubborn and driven >>>> and have been told a few times I shouldn't be able to do the things I >>>> do, >>>> it's only my stubborness and logic that keeps me going. My reality, >>>> though, is that I am not happy most of time. I have a lot of dark days. >>>> I live alone and it's a struggle. I have had evaluations and told >>>> there's >>>> nothing else out there to help me. I don't have any friends or >>>> co-workers >>>> are disabled, so I feel alone a lot of the time. I have a couple >>>> friends >>>> I see once every week or two. My brothers both live out of town. My dad >>>> is gone and my mom has had 2 cancer scares, so it's conceivable that I >>>> could have no family nearby in the not-too-distant future. I have said >>>> to >>>> myself that I was tired of being trapped in this body many times. Yes, >>>> I >>>> have wished I was dead more than once. I smile and joke a lot but >>>> outside >>>> of work I mostly just home alone in bed >>>> and it really gets to a person after a while. I know it was just a TV >>>> show and one character could never represent all of us at the same >>>> time, >>>> but I identified quite a bit with that character. >>>> Tom >>>> >>>> -------------- Original message -------------- >>>> From: Jenn Malatesta <nekrosys@...> >>>> OK, once again, I guess I'm the weird one out. I know there are >>>> plenty of times, when I've been very sick and hardly able to breath, >>>> when I've said the exact same words the character did on the show. I >>>> have accomplished stuff in my life, but there are times when I am so >>>> completely *over* having SMA that it hurts. It may have been a dark >>>> and dreary portrayal, but that has been my exact reality when I was >>>> in similar situations. >>>> >>>> Jenn Malatesta >>>> nekrosys@... >>>> nekrosys.net >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 yup, there's nothing better than being able to wear shorts in the summer. I can move around much more freely than when I have jeans on. I don't wear a heavy coat in the winter either. With a lighter one, I'm cold, but I'd rather not feel so restricted. The frustrating thing about the driving is that once I'm in, I can drive pretty well, for at least short distances, without getting tired, but since I can't get in, it doesn't matter. I checked out some different options to help me get in, but everything is so expensive. Then I think maybe I shouldn't be driving anyway. How do I really know if I'm capable of driving my son around safely enough? What's your opinion on that? I figure if I'm not sure, I probably shouldn't be doing it. Maybe not being able to get in, is fate's way of letting me know i'm not suppossed to be driving. Do you walk around your house and at work without much difficulty? Re: House on Fox >>>> >>>>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I >>>>> am >>>>> happy on the outside most of the time and I am very stubborn and >>>>> driven >>>>> and have been told a few times I shouldn't be able to do the things I >>>>> do, >>>>> it's only my stubborness and logic that keeps me going. My reality, >>>>> though, is that I am not happy most of time. I have a lot of dark >>>>> days. >>>>> I live alone and it's a struggle. I have had evaluations and told >>>>> there's >>>>> nothing else out there to help me. I don't have any friends or >>>>> co-workers >>>>> are disabled, so I feel alone a lot of the time. I have a couple >>>>> friends >>>>> I see once every week or two. My brothers both live out of town. My >>>>> dad >>>>> is gone and my mom has had 2 cancer scares, so it's conceivable that I >>>>> could have no family nearby in the not-too-distant future. I have said >>>>> to >>>>> myself that I was tired of being trapped in this body many times. Yes, >>>>> I >>>>> have wished I was dead more than once. I smile and joke a lot but >>>>> outside >>>>> of work I mostly just home alone in bed >>>>> and it really gets to a person after a while. I know it was just a TV >>>>> show and one character could never represent all of us at the same >>>>> time, >>>>> but I identified quite a bit with that character. >>>>> Tom >>>>> >>>>> -------------- Original message -------------- >>>>> From: Jenn Malatesta <nekrosys@...> >>>>> OK, once again, I guess I'm the weird one out. I know there are >>>>> plenty of times, when I've been very sick and hardly able to breath, >>>>> when I've said the exact same words the character did on the show. I >>>>> have accomplished stuff in my life, but there are times when I am so >>>>> completely *over* having SMA that it hurts. It may have been a dark >>>>> and dreary portrayal, but that has been my exact reality when I was >>>>> in similar situations. >>>>> >>>>> Jenn Malatesta >>>>> nekrosys@... >>>>> nekrosys.net >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 I can't walk or stand and am probably significantly weaker than you. But my driving situation is similiar. I have a mini-van with hand controls etc. But the same issue applies.... when is it not safe for me to drive? About a year ago, I started driving by myself. If we went anywhere as a family, I would have my wife drive our other van and we loaded our kid into that van. But basically, I didn't feel safe enough to have passengers in my vehicle and certainly not my son. I felt in control of the van, but was beginning to struggle and knew if there was an emergency driving situation like swerving or suddenly braking I could easily loose control of the van. So I drove solo for a year and very cautiously, never getting myself in a bind and never trying to go to destinations that would really fatigue me. I still felt in control, but not by much. Interesting, I had many, many dreams about driving and loosing control of the van at high speeds. Not good. Now, just two weeks ago, I quit driving altogether. I had gotten just a little weaker and knew that if my arm fell off the steering wheel, I may not be able to get in back in time. Or, if my arm fell of the hand controls, it would take me too long to reposition. Since I need to drive 20 minutes on the interstate every day with everyone around me doing 75-80 mph, it's just too dangerous. I knew this day would come, and started the process to get a new van with EMC controls about 9 months ago. I believe that this van will be easy to drive and hopefully last me 5-10 years depending on the progression of my SMA. The hard-part is knowing when to call it quits or when to switch to new equipment. If you wait to long you could find out the hard way with an accident. I hate not driving, it takes away HUGE independence... I really hope my new van and EMC controls works for me. Best of luck to you. > > There have been times where I had to get off the road quickly and sit for a while because my leg or arms quit on me. That can be scary. My problem lately has been getting out of my truck. I had an incident a few months ago where i was trying to get out and fell. My right hand slipped down into the armrest and my left hand was on the ground. It was so painful. 99% of the time I am driving alone, I was lucky that I had someone with me that time or I think I would have been hanging like that until something broke...either the arm rest or my wrist. At work I have a couple guys that come out and stand by while I'm getting out but at home I'm on my own. Yeah, falling is the worst part for me, too. I'm sorry to hear you can't drive anymore, that must be really hard. I know how hard it is to find a vehicle I can get into and out of on my own. After my accident my boss drove me around to about 10 different rental places. I tried one or two vehicles at each one and not one worked > for me. I found another used Tacoma similar to the one I wrecked and bought that. I'm with you on winter, too. I cannot put on a heavy coat or move once I have one on, my arms are just too weak, so I just tough it out. > > --------- Re: House on Fox > >>> > >>>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I > >>>> am > >>>> happy on the outside most of the time and I am very stubborn and driven > >>>> and have been told a few times I shouldn't be able to do the things I > >>>> do, > >>>> it's only my stubborness and logic that keeps me going. My reality, > >>>> though, is that I am not happy most of time. I have a lot of dark days. > >>>> I live alone and it's a struggle. I have had evaluations and told > >>>> there's > >>>> nothing else out there to help me. I don't have any friends or > >>>> co-workers > >>>> are disabled, so I feel alone a lot of the time. I have a couple > >>>> friends > >>>> I see once every week or two. My brothers both live out of town. My dad > >>>> is gone and my mom has had 2 cancer scares, so it's conceivable that I > >>>> could have no family nearby in the not-too-distant future. I have said > >>>> to > >>>> myself that I was tired of being trapped in this body many times. Yes, > >>>> I > >>>> have wished I was dead more than once. I smile and joke a lot but > >>>> outside > >>>> of work I mostly just home alone in bed > >>>> and it really gets to a person after a while. I know it was just a TV > >>>> show and one character could never represent all of us at the same > >>>> time, > >>>> but I identified quite a bit with that character. > >>>> Tom > >>>> > >>>> -------------- Original message -------------- > >>>> From: Jenn Malatesta <nekrosys@...> > >>>> OK, once again, I guess I'm the weird one out. I know there are > >>>> plenty of times, when I've been very sick and hardly able to breath, > >>>> when I've said the exact same words the character did on the show. I > >>>> have accomplished stuff in my life, but there are times when I am so > >>>> completely *over* having SMA that it hurts. It may have been a dark > >>>> and dreary portrayal, but that has been my exact reality when I was > >>>> in similar situations. > >>>> > >>>> Jenn Malatesta > >>>> nekrosys@... > >>>> nekrosys.net > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 I guess if you don't feel comfortable driving it's probably better if you didn't. I know I would become very depressed if I gave up driving. Even if I can't get out for a day because of snow or ice I get down. Can you not get in because the seat is too high? Or is it getting your legs in the car? Sometimes I have a hard time with getting my legs in. I'm thinking about checking out hand controls soon. I'm kind of afraid to take that step but I will have to soon. I do walk in the office. My boss put a handicapped space right at my office door so I use a cane in my left hand and hold on to a railing with the right. Walking to the bathroom I have the cane in one hand and hold on to the wall with the other. Same thing around the house, I use a cane and whatever wall or piece of furniture that is within reach. I did have a problem last night, though. I couldn't get my foot over the threshhold of my front door and almost went down. Managed to stay upright and drag my foot over in the third try but by then I was exhausted and about to collapse. --------- Re: House on Fox >>>> >>>>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I >>>>> am >>>>> happy on the outside most of the time and I am very stubborn and >>>>> driven >>>>> and have been told a few times I shouldn't be able to do the things I >>>>> do, >>>>> it's only my stubborness and logic that keeps me going. My reality, >>>>> though, is that I am not happy most of time. I have a lot of dark >>>>> days. >>>>> I live alone and it's a struggle. I have had evaluations and told >>>>> there's >>>>> nothing else out there to help me. I don't have any friends or >>>>> co-workers >>>>> are disabled, so I feel alone a lot of the time. I have a couple >>>>> friends >>>>> I see once every week or two. My brothers both live out of town. My >>>>> dad >>>>> is gone and my mom has had 2 cancer scares, so it's conceivable that I >>>>> could have no family nearby in the not-too-distant future. I have said >>>>> to >>>>> myself that I was tired of being trapped in this body many times. Yes, >>>>> I >>>>> have wished I was dead more than once. I smile and joke a lot but >>>>> outside >>>>> of work I mostly just home alone in bed >>>>> and it really gets to a person after a while. I know it was just a TV >>>>> show and one character could never represent all of us at the same >>>>> time, >>>>> but I identified quite a bit with that character. >>>>> Tom >>>>> >>>>> -------------- Original message -------------- >>>>> From: Jenn Malatesta <nekrosys@...> >>>>> OK, once again, I guess I'm the weird one out. I know there are >>>>> plenty of times, when I've been very sick and hardly able to breath, >>>>> when I've said the exact same words the character did on the show. I >>>>> have accomplished stuff in my life, but there are times when I am so >>>>> completely *over* having SMA that it hurts. It may have been a dark >>>>> and dreary portrayal, but that has been my exact reality when I was >>>>> in similar situations. >>>>> >>>>> Jenn Malatesta >>>>> nekrosys@... >>>>> nekrosys.net >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 Hi , what are emc controls? Re: House on Fox > >>> > >>>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I > >>>> am > >>>> happy on the outside most of the time and I am very stubborn and driven > >>>> and have been told a few times I shouldn't be able to do the things I > >>>> do, > >>>> it's only my stubborness and logic that keeps me going. My reality, > >>>> though, is that I am not happy most of time. I have a lot of dark days. > >>>> I live alone and it's a struggle. I have had evaluations and told > >>>> there's > >>>> nothing else out there to help me. I don't have any friends or > >>>> co-workers > >>>> are disabled, so I feel alone a lot of the time. I have a couple > >>>> friends > >>>> I see once every week or two. My brothers both live out of town. My dad > >>>> is gone and my mom has had 2 cancer scares, so it's conceivable that I > >>>> could have no family nearby in the not-too-distant future. I have said > >>>> to > >>>> myself that I was tired of being trapped in this body many times. Yes, > >>>> I > >>>> have wished I was dead more than once. I smile and joke a lot but > >>>> outside > >>>> of work I mostly just home alone in bed > >>>> and it really gets to a person after a while. I know it was just a TV > >>>> show and one character could never represent all of us at the same > >>>> time, > >>>> but I identified quite a bit with that character. > >>>> Tom > >>>> > >>>> -------------- Original message -------------- > >>>> From: Jenn Malatesta <nekrosys@...> > >>>> OK, once again, I guess I'm the weird one out. I know there are > >>>> plenty of times, when I've been very sick and hardly able to breath, > >>>> when I've said the exact same words the character did on the show. I > >>>> have accomplished stuff in my life, but there are times when I am so > >>>> completely *over* having SMA that it hurts. It may have been a dark > >>>> and dreary portrayal, but that has been my exact reality when I was > >>>> in similar situations. > >>>> > >>>> Jenn Malatesta > >>>> nekrosys@... > >>>> nekrosys.net > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 http://www.emc-digi.com/explore.cfm/home/ Expensive, but amazing stuff. The key is to get controls that are easier than you need. That way there are either no, or few issues as you get weaker or if you're having a bad day. There's nothing so fatiguing as a setup that is always barely adequate. I don't drive (never could afford it), but I speak from the experience of wheelchair controls and everything else I have to deal with. Robin wrote on 10/12/07 14:02: > Hi , what are emc controls? > Re: House on Fox > > >>> > > >>>> Thank you Jenn (and Terry, too), that's exactly what I was > feeling. I > > >>>> am > > >>>> happy on the outside most of the time and I am very stubborn > and driven > > >>>> and have been told a few times I shouldn't be able to do the > things I > > >>>> do, > > >>>> it's only my stubborness and logic that keeps me going. My > reality, > > >>>> though, is that I am not happy most of time. I have a lot of > dark days. > > >>>> I live alone and it's a struggle. I have had evaluations and > told > > >>>> there's > > >>>> nothing else out there to help me. I don't have any friends or > > >>>> co-workers > > >>>> are disabled, so I feel alone a lot of the time. I have a > couple > > >>>> friends > > >>>> I see once every week or two. My brothers both live out of > town. My dad > > >>>> is gone and my mom has had 2 cancer scares, so it's > conceivable that I > > >>>> could have no family nearby in the not-too-distant future. I > have said > > >>>> to > > >>>> myself that I was tired of being trapped in this body many > times. Yes, > > >>>> I > > >>>> have wished I was dead more than once. I smile and joke a lot > but > > >>>> outside > > >>>> of work I mostly just home alone in bed > > >>>> and it really gets to a person after a while. I know it was > just a TV > > >>>> show and one character could never represent all of us at the > same > > >>>> time, > > >>>> but I identified quite a bit with that character. > > >>>> Tom > > >>>> > > >>>> -------------- Original message -------------- > > >>>> From: Jenn Malatesta <nekrosys@...> > > >>>> OK, once again, I guess I'm the weird one out. I know there > are > > >>>> plenty of times, when I've been very sick and hardly able to > breath, > > >>>> when I've said the exact same words the character did on the > show. I > > >>>> have accomplished stuff in my life, but there are times when > I am so > > >>>> completely *over* having SMA that it hurts. It may have been > a dark > > >>>> and dreary portrayal, but that has been my exact reality when > I was > > >>>> in similar situations. > > >>>> > > >>>> Jenn Malatesta > > >>>> nekrosys@... > > >>>> nekrosys.net > > >>>> > > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 The seat is too high. It's an electric seat on the drivers side and I used to put it in the lowest position, stand on my tippy toes, sit on the seat, pull myself in with the steering wheel, and then put my legs in by cupping my hands together under my legs and pulling them in. It was actually pretty easy and it only took a couple seconds. All of a sudden, I couldn't get on the seat enough to reach down and pull my legs in.I think maybe because I couldnt stand on my tippy toes good enough anymore. I've thought about hand controls if I can solve this other problem. But with weak arms and hands, how would that work? I can do stuff with them, like laundry, dishes, etc, but it's tiring. How much strength is needed for hand controls? I've been looking into the star bus, which would come to my house and pick me up, bring me where I need to go, and bring me back again. But when you're not used to that kind of thing, it's a tough step. I always loved being able to drive. But now, I'm often concerned about what if I couldn't get my foot to the brake fast enough if i needed too. Or what if my foot slips off the brake? I do the same thing as you in my house... I walk around by holding onto walls, furniture, counters, etc. Outside the house, I've been using a scooter for the past year. That must have scared you last night having trouble getting into your house.I've been in that position too. Re: House on Fox >>>>> >>>>>> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I >>>>>> am >>>>>> happy on the outside most of the time and I am very stubborn and >>>>>> driven >>>>>> and have been told a few times I shouldn't be able to do the things I >>>>>> do, >>>>>> it's only my stubborness and logic that keeps me going. My reality, >>>>>> though, is that I am not happy most of time. I have a lot of dark >>>>>> days. >>>>>> I live alone and it's a struggle. I have had evaluations and told >>>>>> there's >>>>>> nothing else out there to help me. I don't have any friends or >>>>>> co-workers >>>>>> are disabled, so I feel alone a lot of the time. I have a couple >>>>>> friends >>>>>> I see once every week or two. My brothers both live out of town. My >>>>>> dad >>>>>> is gone and my mom has had 2 cancer scares, so it's conceivable that >>>>>> I >>>>>> could have no family nearby in the not-too-distant future. I have >>>>>> said >>>>>> to >>>>>> myself that I was tired of being trapped in this body many times. >>>>>> Yes, >>>>>> I >>>>>> have wished I was dead more than once. I smile and joke a lot but >>>>>> outside >>>>>> of work I mostly just home alone in bed >>>>>> and it really gets to a person after a while. I know it was just a TV >>>>>> show and one character could never represent all of us at the same >>>>>> time, >>>>>> but I identified quite a bit with that character. >>>>>> Tom >>>>>> >>>>>> -------------- Original message -------------- >>>>>> From: Jenn Malatesta <nekrosys@...> >>>>>> OK, once again, I guess I'm the weird one out. I know there are >>>>>> plenty of times, when I've been very sick and hardly able to breath, >>>>>> when I've said the exact same words the character did on the show. I >>>>>> have accomplished stuff in my life, but there are times when I am so >>>>>> completely *over* having SMA that it hurts. It may have been a dark >>>>>> and dreary portrayal, but that has been my exact reality when I was >>>>>> in similar situations. >>>>>> >>>>>> Jenn Malatesta >>>>>> nekrosys@... >>>>>> nekrosys.net >>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 thanks Jeff........ Robin Re: House on Fox > > >>> > > >>>> Thank you Jenn (and Terry, too), that's exactly what I was > feeling. I > > >>>> am > > >>>> happy on the outside most of the time and I am very stubborn > and driven > > >>>> and have been told a few times I shouldn't be able to do the > things I > > >>>> do, > > >>>> it's only my stubborness and logic that keeps me going. My > reality, > > >>>> though, is that I am not happy most of time. I have a lot of > dark days. > > >>>> I live alone and it's a struggle. I have had evaluations and > told > > >>>> there's > > >>>> nothing else out there to help me. I don't have any friends or > > >>>> co-workers > > >>>> are disabled, so I feel alone a lot of the time. I have a > couple > > >>>> friends > > >>>> I see once every week or two. My brothers both live out of > town. My dad > > >>>> is gone and my mom has had 2 cancer scares, so it's > conceivable that I > > >>>> could have no family nearby in the not-too-distant future. I > have said > > >>>> to > > >>>> myself that I was tired of being trapped in this body many > times. Yes, > > >>>> I > > >>>> have wished I was dead more than once. I smile and joke a lot > but > > >>>> outside > > >>>> of work I mostly just home alone in bed > > >>>> and it really gets to a person after a while. I know it was > just a TV > > >>>> show and one character could never represent all of us at the > same > > >>>> time, > > >>>> but I identified quite a bit with that character. > > >>>> Tom > > >>>> > > >>>> -------------- Original message -------------- > > >>>> From: Jenn Malatesta <nekrosys@...> > > >>>> OK, once again, I guess I'm the weird one out. I know there > are > > >>>> plenty of times, when I've been very sick and hardly able to > breath, > > >>>> when I've said the exact same words the character did on the > show. I > > >>>> have accomplished stuff in my life, but there are times when > I am so > > >>>> completely *over* having SMA that it hurts. It may have been > a dark > > >>>> and dreary portrayal, but that has been my exact reality when > I was > > >>>> in similar situations. > > >>>> > > >>>> Jenn Malatesta > > >>>> nekrosys@... > > >>>> nekrosys.net > > >>>> > > >>>> Quote Link to comment Share on other sites More sharing options...
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