Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 The L-Tyrosine is to help the Fatigue... has nothing to do with digestive enzymes... The L-Glutamine helps the muscles stay happy... and help the immune system... has nothing to do with digestive enzymes... Both were suggested to me by a neurologist who specializes in SMA hope this helps ===== LOMONACO DESIGN Here to Channel Creative Design Solutions for you Voice: 562.900.0274 Fax: 562.684.4102 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2005 Report Share Posted January 13, 2005 hi joan, i definitely agree with nicole...don't worry about what other people think. gossip is an intrinsic part of community living, though, it comes in different flavors depending on the type of community you're in. i lived in a nursing home for almost a year and a half as a teenager - 40 moms and grandmas all nosing in my business. the staff were the worst. after living in 3 regular market apartments and a communal house over 8 years, i considered a retirement community much like the one you live in because is was accessible, subsidized, and had a number of younger disabled residents who were friends of mine. they had similar complaints to yours about the gossip and judgmentalness, and also had some difficulties with some of the older residents being afraid of or uncomfortable with the " types " of personal assistants who were entering and exiting the building. they were suspected to be dangerous because of tattoos, hair dye, dread locks, ripped black clothes, etc. it was a new building, so it took them time to figure out policies on whom to allow access to the building...a little education about different cultures/fashion...better now. my friends found it to be easier when they decided to ignore the intolerance and go about their lives unapologetically. they reserve the common rooms to bring their social lives to them, holding meetings, studying groups, movie nights, book clubs etc. maybe you could host events from your church? i knew the retirement community would be difficult to leave once i settled in, and i wasn't ready for long-term housing. it only offered studios and one-bedroom apartments, and i knew i wanted to live with other people whether they were friends, a partner, a partner with kids, possibly my own adopted kids, or a live-in attendant, if needed. i chose a student housing cooperative instead because it was affordable, with my college student peer group (though i was older), and it wasn't permanent. i also liked it because it appealed to my political and social interests in alternative approaches housing, economics, and environmental resources. it wasn't as accessible, but i'd always adapted before, so wasn't concerned enough to compromise my other interests. i enjoyed living in the co-op, but there was still tons of gossip, especially about whom i was sleeping with or whom they though i was sleeping with. they even gossiped about the logistics of how i might have sex. get a life, i say to them. you've gotten great advice from others about how to become more socially active again, so i won't spend anymore time on that, but i will make note that you are in stable, affordable, accessible housing. it's a good situation to be in if you can jump over the social hurdles. it's also the best possible situation to be in if you decide to move out. it allows you to take your time, save money, sort out your priorities, search for a place, and move without having to settle for less than what will make you content. good luck with your home! alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 How much of each do you take? Jay Re: Question The L-Tyrosine is to help the Fatigue... has nothing to do with digestive enzymes... The L-Glutamine helps the muscles stay happy... and help the immune system... has nothing to do with digestive enzymes... Both were suggested to me by a neurologist who specializes in SMA hope this helps ===== LOMONACO DESIGN Here to Channel Creative Design Solutions for you Voice: 562.900.0274 Fax: 562.684.4102 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 hi joan, i totally understand about the gossip being too much. it may get a little less bothersome as you're getting busier, but dang it hurts sometimes and is pretty irritating. i've sometimes regretted not moving into subsidized housing because of the things you mention...politics, economy, safety. tough choices. but i do hate that elevator-dependency problem. my boyfriend lives in a 4th floor condo. i've gotten stuck in or out a time or 2. also, i'm unable to press elevator buttons. my single-level house is good. i'm very fortunate. i look forward to hearing about your plans to stay or move as they develop. good luck building youe=r social life. cheers! alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Columbus, Ohio? Who is his ortho? does his cast look like the others on this site? Im sorry to ask so many questions, but your soo much closer than Erie. My daughter may need casted soon. I need all the help I can get to get her there!! Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 He sees Dr. Jan Klamar. He is with Greater Ohio Orthopedics. His cast starts at under his arms and goes down a little past his hips. There is a place cut out for his stomach. He has 2 straps that go above his shoulders. I think that if you go to Cincinnati Childrens hospital web site there is a picture of the risser cast. He gets really hot wearing the cast. Usually won't wear a coat saying that he gets too hot. Its made of paster and he gets to pick from colors--red, green, blue, orange, pink. He can also mix colors--last time he chose red and green. He also gets really itchy. When he first got the cast he got some mild pressure areas on his skin at the hip area, but we had him slow down on his activity and his skin cleared up. To be honest, he hates the cast and sometimes cries that he wants the surgery, but I tell him that he has to wear it because we want him to get better. He cannot take a shower or bath either. He has a general anesthesa for the casting which makes him very sick for a day or so. Feb 1 he gets this cast off and we go back to the milwaukee brace for awhile. When your little one has the casting have the md write for some pain meds-- has his spine "stretched" and he gets a little sorre. Naproxen ususally helps and some flexeril helps also. Hope this helps, , 's mom <doll_face95@...> wrote: Columbus, Ohio? Who is his ortho? does his cast look like the others on this site? Im sorry to ask so many questions, but your soo much closer than Erie. My daughter may need casted soon. I need all the help I can get to get her there!! Thanks!__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 If the Distal Ileum is the primary site for VitB12/intrinisic factor absorption why do we see so much Vb12 deficiency? The intrinsic factor is produced by the parietal cells of the stomach. B12 in food is bound to a protein and is cleaved in the acid medium of the stomach. B12 and IF bind in the duodenum and are absorbed in the distal ileum. When a part of the stomach, duodenum or ileum is lost, it is expected…. Vilasi Venkatachalam, MS, RD, CNSD Clinical Nutrition Manager Overlook Hospital/Atlantic Health System (908) 522-2350 -----Original Message----- From: Janelle Heusinger [mailto:jheusinger@...] Sent: Tuesday, January 18, 2005 1:45 PM To: Subject: Question According to Krause, Protein digestion begins in the stomach. Most protein digestion takes place in the duodenum(which is bypassed), final phase of protein digestion takes place in brush border(small intestine microvilli). almost all the protein is absorbed by the time it reaches the end of the Jejunum and only 1% of ingested protein is found in the feces. Question? How much protein is absorbed? are the enzymes present? Thanks Janelle Heusinger RD/LD Grinnell Medical Center 641-236-2488 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 The intestinal tract is approximately 20 feet long (the duodenum only 10-12 inches) so in most cases, there is plenty of intestine left for absorption. The ileum in particular is highly adaptable and over time can assume absorptive functions of other portions of the GI tract. Just from experience with short bowel, for example, most people can live without TPN as long as there is at least 60-100 cm of small intestine remaining (assuming colon is present). So, the GI tract is remarkably efficient. Amy Haselbush -----Original Message-----From: Janelle Heusinger [mailto:jheusinger@...]Sent: Tuesday, January 18, 2005 1:45 PM Subject: Question According to Krause, Protein digestion begins in the stomach. Most protein digestion takes place in the duodenum(which is bypassed), final phase of protein digestion takes place in brush border(small intestine microvilli). almost all the protein is absorbed by the time it reaches the end of the Jejunum and only 1% of ingested protein is found in the feces. Question? How much protein is absorbed? are the enzymes present? If the Distal Ileum is the primary site for VitB12/intrinisic factor absorption why do we see so much Vb12 deficiency? Thanks Janelle Heusinger RD/LD Grinnell Medical Center 641-236-2488 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 That helps more than you know! I had no idea they casted in Columbus. My son went to Cincy Childrens for a second opinion, but they dont use the same method of casting there. Do you think s ortho would be interested in learning Min Mehta's method? It sounds like things are going great for you guys! Even though he protests now, he will be eternally grateful when hes grown!! To all: Laineys appointment has been moved up to next wednesday at 1:00. Im getting seriously nervous!! She came to me last nite saying she couldnt sleep because her " back wouldnt relax and go to sleep. " We talked this morning and she told me that shes been having trouble in gym class with her bending and stretching, but didnt want to say anything because she was afraid her back was getting worse. What do I say to that????? I tried my best to reassure her that even if it has gotten a little worse, that we can deal with it. She broke down again. She keeps asking " What next? " How do you help a child be grateful for having a mild case of EVERYTHING? ADHD..mild... crooked teeth.. need braces... mild... scoliosis... brace or cast... mild. I cant say that I blame her for feeling a little singled out, but things could be SOOO MUCH WORSE!! How do you make them understand that at nine? So much depends on what thier friends say and think... no matter how much you try to teach them to not care, they always do. *sigh* Im just hoping that keeping her in lots of extras...choir, riding lessons, girl scouts,ect, that she wont have time to feel low. You guys have girls in elementry school going through so much more... any tips on keeping spirits high? Any thoughts can help!! Thanks for letting me vent! I feel better. Im going to bed now. Nite all!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hey Sorry I have been so busy I went to the site and could not fnd the picture can you download one onto this site? I would love to see it Chrisitne lisa poorman <badbrownrider@...> wrote: He sees Dr. Jan Klamar. He is with Greater Ohio Orthopedics. His cast starts at under his arms and goes down a little past his hips. There is a place cut out for his stomach. He has 2 straps that go above his shoulders. I think that if you go to Cincinnati Childrens hospital web site there is a picture of the risser cast. He gets really hot wearing the cast. Usually won't wear a coat saying that he gets too hot. Its made of paster and he gets to pick from colors--red, green, blue, orange, pink. He can also mix colors--last time he chose red and green. He also gets really itchy. When he first got the cast he got some mild pressure areas on his skin at the hip area, but we had him slow down on his activity and his skin cleared up. To be honest, he hates the cast and sometimes cries that he wants the surgery, but I tell him that he has to wear it because we want him to get better. He cannot take a shower or bath either. He has a general anesthesa for the casting which makes him very sick for a day or so. Feb 1 he gets this cast off and we go back to the milwaukee brace for awhile. When your little one has the casting have the md write for some pain meds-- has his spine "stretched" and he gets a little sorre. Naproxen ususally helps and some flexeril helps also. Hope this helps, , 's mom <doll_face95@...> wrote: Columbus, Ohio? Who is his ortho? does his cast look like the others on this site? Im sorry to ask so many questions, but your soo much closer than Erie. My daughter may need casted soon. I need all the help I can get to get her there!! Thanks! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2005 Report Share Posted January 25, 2005 Sorry that I haven't replied to your post for awhile. I have a hard time with the computer--I just go to and type in risser cast and access it that way. , 's mom <christinehrph@...> wrote: Hey Sorry I have been so busy I went to the site and could not fnd the picture can you download one onto this site? I would love to see it Chrisitne lisa poorman <badbrownrider@...> wrote: He sees Dr. Jan Klamar. He is with Greater Ohio Orthopedics. His cast starts at under his arms and goes down a little past his hips. There is a place cut out for his stomach. He has 2 straps that go above his shoulders. I think that if you go to Cincinnati Childrens hospital web site there is a picture of the risser cast. He gets really hot wearing the cast. Usually won't wear a coat saying that he gets too hot. Its made of paster and he gets to pick from colors--red, green, blue, orange, pink. He can also mix colors--last time he chose red and green. He also gets really itchy. When he first got the cast he got some mild pressure areas on his skin at the hip area, but we had him slow down on his activity and his skin cleared up. To be honest, he hates the cast and sometimes cries that he wants the surgery, but I tell him that he has to wear it because we want him to get better. He cannot take a shower or bath either. He has a general anesthesa for the casting which makes him very sick for a day or so. Feb 1 he gets this cast off and we go back to the milwaukee brace for awhile. When your little one has the casting have the md write for some pain meds-- has his spine "stretched" and he gets a little sorre. Naproxen ususally helps and some flexeril helps also. Hope this helps, , 's mom <doll_face95@...> wrote: Columbus, Ohio? Who is his ortho? does his cast look like the others on this site? Im sorry to ask so many questions, but your soo much closer than Erie. My daughter may need casted soon. I need all the help I can get to get her there!! Thanks! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 I've ordered stamps of my signature. Unfortunately I didn't think of getting a stamp before I lost the ability to write. However, I found stamp online stores where you can email a scan or file of your name. So, I " wrote " (drew) my name on my computer in a paint program. _http://www.rubberstamps.com/smalsigselin.html_ (http://www.rubberstamps.com/smalsigselin.html) _http://www.rubberstamps4u.net/xcart/customer/product.php?productid=16151 & cat= 258 & page=1_ (http://www.rubberstamps4u.net/xcart/customer/product.php?productid=16151 & cat=25\ 8 & page=1) If I don't have my stamp handy I have someone else write my name and then they print their initials below it. I've done this for medical and legal forms and never have had an issue. Sometimes they ask a witness to initial if someone else is signing for me. I might verbally say I give consent for the signing of my name on the paper. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 you can hold her hand to help her sign her name and have a stamp made of that signature. i ordered mine through my bank. At 03:53 PM 1/30/2005, you wrote: >Hello, > >I have a question about signing important papers. My daughter is >turning 18 next month and is applying to go to college. She isn't >able to write - so what is the legal way for her to sign these >papers? Can we hold her hand? If we use an " X " will there be alot >of questions? Can she get a stamp? I'm having trouble finding >answers to this question. Alot of these forms take so long to fill >out, I don't want there to be a hold up or problem with her >signature. > >Thank you for your help, >Donna > > > > > >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 January 31, 2005 Report Share Posted January 31, 2005 I use the WIVIK program. It's an on-screen keyboard. If you're able to use the mouse (as I am), all you need to do is point and click on the letters to type.It's been a godsend for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 In a message dated 1/31/2005 12:04:43 PM Eastern Standard Time, nicolomo@... writes: How do those of you who cannot write with a pen type on computer? Do you use voice recocgnition software? and if so which one Yes, I use a speech recognition program called DragonDictate for Windows, however, it only works on operating systems Windows ME or prior versions of Windows. I'm also very knowledgeable in this area and the current best speech recognition program is Dragon's NaturallySpeaking Ver. 8. There are several versions of NaturallySpeaking and they range in price. You can get more information at _www.scansoft.com_ (http://www.scansoft.com) . Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I use a trackball (I can move a few fingers) and an onscreen keyboard. There are many onscreen keyboards. Windows (XP) even comes with an onscreen keyboard. Or there are many you can buy or download. Click-N-Type, My-T-Mouse and so on. _http://www.lakefolks.org/cnt/_ (http://www.lakefolks.org/cnt/) _http://www.imgpresents.com/mytmouse/mtm.htm_ (http://www.imgpresents.com/mytmouse/mtm.htm) _http://www.microsoft.com/enable/training/windowsxp/usingkeyboard.aspx_ (http://www.microsoft.com/enable/training/windowsxp/usingkeyboard.aspx) You can use a mouse, trackball, joystick or pad. Most onscreen keyboards have a setting you can use to scan letters automatically and when the letter you want is selected you just need to " click " . There are many devises you can get to " click " some by blowing air, moving a finger, blinking etc. _http://www.infogrip.com_ (http://www.infogrip.com) I did use a mini keyboard sometimes when I had more use of my hands. It's about 8 inches long so it fits easily on a tray and you don't need to reach far to use all the keys. I used a pencil the eraser end to " punch " the keys. _http://www.infogrip.com/product_view.asp?RecordNumber=586 & sbcolor=%23FF9966 & o ption=keyboard & subcategory=3 & CatTxt=Small+%2F+Mini+%2F+Compact & optiontxt=Keybo ard_ (http://www.infogrip.com/product_view.asp?RecordNumber=586 & sbcolor=#FF9966 & optio\ n=keyboard & subcategory=3 & CatTxt=Small+/+Mini+/+Compact & optiontxt=Keyboa rd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 How do those of you who cannot write with a pen type on computer? Do you use voice recocgnition software? and if so which one __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I can type, but I use ViaVoice on a Mac too. -- Jenn Malatesta http://www.isoc.net/brokeninside/nekrosys/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I use a mini keyboard and a pencil-like thing to hit the keys. http://www.magicwandkeyboard.com<http://www.magicwandkeyboard.com/> It is very expensive though. I do not like using voice recognition. I don't want people hearing everything I type. Re: question How do those of you who cannot write with a pen type on computer? Do you use voice recocgnition software? and if so which one Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 nicole, i tried voice recognition software - Dragon Dictate and then later Dragon NaturallySpeaking - but found it to be cumbersome. at the time i was still able to type fairly well, but was losing reach and stamina. because i could still type, i had little incentive to correct the errors it frequently made without simply reaching for the keyboard. it was easier to just type. despite hours of training it to my voice, it generally made 3+ errors per sentence and often typed " the " when it registered the sound of my ventilator. i was never able to use it at work, and my niece couldn't use her's at school - it requires more quiet than available in most work or academic settings, or in many households. my niece and i also felt uncomfortable with people around being able to hear what we were writing. i know people who are happy with it - a few on this list - so i recommend trying it and other software and hardware options if you can. if your working or are in the position to be planning to work, you can ask vocational rehabilitation to give you an assistive technology evaluation so you can try different things out. i'm now using an on-screen keyboard called click-n-type and it's word prediction feature. it's a free download at http://www.lakefolks.org/cnt/. the word prediction feature is weak and tedious...it needs to be manually updated by adding the words one uses and deleting those that one doesn't use. the keyboard is great, especially because one can rearrange the keys and eliminate those that aren't necessary. i experimented with quite a few on-screen keyboards before settling on click-n-type. rebecca published a great list of them. i wish i could afford Reach http://ability.enablemart.com/productGroupDetail.aspx?store=10 & dept=20 & group=49. alana At 08:45 AM 1/31/2005, you wrote: >How do those of you who cannot write with a pen type >on computer? Do you use voice recocgnition software? >and if so which one Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I think that voice typing is hard becuz I journal alot and like to have my journaling private, really hard to do when you have caregivers 24/7. I use an on-screen keyboard w/ my touch pad mouse that came as is on my lap top, and I am still able (barely) to use my mouse on my desktop. As far as signing my name, I hardly ever have trouble with my nurse signing it & their initials after it. Its also a way for me to keep track of what is going on at all times. (learned the hard way by being ripped off). Jodi & Maggie May Accessible Travel Disability Travel Specialist and Service Dog " Making a way for YOU to get away! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 Thank you so much for all the great information! Now I can get these papers signed and sent off. We are just starting the process of going to college - so I'll probably have more questions in the future. It's great to have a place to go where people are so nice and knowledgable. Donna > > Hello, > > I have a question about signing important papers. My daughter is > turning 18 next month and is applying to go to college. She isn't > able to write - so what is the legal way for her to sign these > papers? Can we hold her hand? If we use an " X " will there be alot > of questions? Can she get a stamp? I'm having trouble finding > answers to this question. Alot of these forms take so long to fill > out, I don't want there to be a hold up or problem with her > signature. > > Thank you for your help, > Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 yes, thank you, adam. my friend mark swears by it and has invested in a very good microphone and shuts his door at work. along with his MD, he has RSI so can't mouse much. dragon works great for him along with an occasional poke at a keyboard with a pencil eraser. i tried the upgrade last spring - unfortunately, it still picks up the sound of my ventilator which i hold in my mouth, and i often like to listen to news or music when writing. dragon doesn't address my privacy concerns for my personal or professional writing, and my work generally involves typing while talking with people. quite cumbersome. my voice also changes frequently. but, yes, the upgrades are much better and people should try every option they can get their hands on to see what works best for them. cheers! alana At 02:42 PM 2/1/2005, you wrote: >Alana, > >I don't post much, but FYI: Dragon has improved exponentially. I work at >a consulting firm where my typing demands have increased, but strength has >waned. I find using a combination of a small keyboard (company is Cherry) >and Dragon to almost triple my productivity. The new version only takes a >couple hours to train. > >Just throwing it out there as another data point. > >Adam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 Adam, Which version is that? Lori Adam Schumacher wrote: >Alana, > >I don't post much, but FYI: Dragon has improved exponentially. I work at a consulting firm where my typing demands have increased, but strength has waned. I find using a combination of a small keyboard (company is Cherry) and Dragon to almost triple my productivity. The new version only takes a couple hours to train. > >Just throwing it out there as another data point. > >Adam > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 You could try hand over hand to start and then go from there. that worked for me with the hair washing. Have you and/or he learned any basic sign language? You might want to check into that as well, as a way of basic communication. Sherri > > Hello, > > I have a question please? My son just turned 12 last week. He is for the most part non-verbal and we still haven't hit on the best way to communicate with him. > > How do I go about getting him to wash his own hair and bathe? How do I get him to start wiping himself after toileting? How do I get him to understand that he needs to start doing some things for himself? How do I get him to start dressing himself? {He can already undress himself with no problem.} > > Any and all advice is welcome...I really don't want to be doing some of these things on a teenager, then he will soon be a man. Thanks! > > Thanks, > Theree > Mom to Tanner, 17, ADHD and Tucker, 12, Autism. Quote Link to comment Share on other sites More sharing options...
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