Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi, Just wanted to reply to the survey. My answer would be ( normal activity. was born 2 weeks early at 38 weeks. He did have a short loss of oxygen and I had to have a emergency c-section. Here is an interesting thought though. I have read two things that make me wonder. First there has been mention that apraxia could possibly be caused by lack of oxygen. So there is the first. Secondly I read in some of my research that apraxia is related to the frontal lobe of the brain and damage to that area could be a possible cause. Now during delivery, the doctor used forceps while I pushed. Wow huh? Makes you wonder. We did not see problems with at the time, not until around 2 years of age. He had no words or sounds. But looking back now I know he had feeding issues and sensory issues. All of his milestones were also delayed, but not to a noticable degree just a month or two later than my oldest. Just thought I'd share that with all of you Crystal Mom to 5 Apraxia and Sensory Issues and Still waiting on Dx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Bless you, Janet. That's the straight-up truth ... writes: > From: Gingersnap1964@... > Subject: Re: SURVEY: What do we want health practitioners to know? > > Multiple Chemical Sensitive. It is horrible. > Janet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2004 Report Share Posted October 19, 2004 Bless you, Janet. That's the straight-up truth ... writes: > From: Gingersnap1964@... > Subject: Re: SURVEY: What do we want health practitioners to know? > > Multiple Chemical Sensitive. It is horrible. > Janet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 > > >Message: 17 > Date: Tue, 18 Jan 2005 18:12:32 -0000 > From: " loma1956 " <district@...> >Subject: LDN Survey Form > > >Hi all, > >Many thanks to those who took the time and trouble to complete the >form, it is very much appreciated. > >The LDN Research Trust need 27 more to complete the first 200, so, >once again, I am pleading to those who haven`t yet filled the form >in to please do so, if not for yourself, do it for generations to >come. My father, his cousin and myself all have MS and my concerns >are now with my own children. I believe LDN may be the answer to >all our prayers, so please, please take the time to fill out the >form. We must do our best to get this drug into trials. > >Lorna > Lorna, Can you send a web address for a web page that works? I checked out the one you sent the last time you wrote, and it was not a functional web page. I couldn't get anywhere by clicking on ANYTHING. Is the survey on Tammy Jo's web site the same survey? Vali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 > >________________________________________________________________________ > >Message: 18 > Date: Tue, 18 Jan 2005 18:20:11 -0000 > From: " loma1956 " <district@...> >Subject: LDN Survey Form > > >Sorry folks I forgot to add the Trust address. >www.ldnresearchtrust.org > >Lorna > Lorna, Yep, this is the same web page where I could not access the survey when I tried before, and I could not access it today, either. The web site may need some work, but whatever. Question still remains......is this the same survey that's on Sammy Jo's web site? Vali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Hi Vali, This is the survey site I just went to.. Worked ok for me..?? Jim http://www.ldnresearchtrust.org/html/survey.html [low dose naltrexone] Re: survey >>Sorry folks I forgot to add the Trust address.>www.ldnresearchtrust.org>>Lorna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Okay, then it must just be my computer because I can get to this web page, but I still can't take the survey. I know that there is a survey on Sammy Jo's web site, so maybe I'll take that one. I think they were for the same organization. Vali -- In low dose naltrexone , " jsgarvin " <jsgarvin@s...> wrote: > Hi Vali, > This is the survey site I just went to.. Worked ok for me..?? > Jim > > http://www.ldnresearchtrust.org/html/survey.html > [low dose naltrexone] Re: survey > > > > > > > >Sorry folks I forgot to add the Trust address. > >www.ldnresearchtrust.org > > > >Lorna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Sorry everybody. Hope the survey gets through. Bestaunt (Mona) How's this ? I'll send this again to everyone Thanks again. Multiple Sclerosis patients and their caregivers In an effort to better serve patients with MS, a strategy team at University of Massachusetts-Lowell has been assembled to investigate the issues and provide recommendations. Please take a moment to answer the following questions. We thank you in advance for you input. 1. Are you a newly diagnosed patient? ___Yes ___ No 2. Does your clinic meet your needs? ___Yes ___ No 3. Why did you select your clinic? Use a check mark to indicate any that apply. ____ All necessary services are available under 1 roof ____ Key services are available under 1 roof Key services include:___________________________________ ____ Location / convenience ____ Other: _____________________________________________ 4. Please rate the importance of the services using the following criteria: 1 – Not important to me, could do without, and it is simply a convenience 2 – A somewhat important service that I would use regularly 3 – An essential service for my treatment that I would need in every visit ___ All services available under one roof ___ Availability/Ease of parking ___ Transportation to/from clinic ___ MRI on site ___ On-site infusions ___ Emergency/walk-in appointments ___ After-hours help available ___ On-site availability of the following: ___ Occupational Therapy ___ Physical Therapy ___ Speech Therapy ___ Cognitive Rehabilitation ___ Nutritionists ___ Legal services ___ Available mentors/support group ___ Help with insurance and/or social matters ___ Computers available for research, grocery ordering, other ___ Educational opportunities 5. Does your current clinic charge fees for any of the (above) services? Which ones? ___Yes ___ No 6. If they did need to charge a reasonable fee to offer a service not currently offered - would you find that acceptable? Examples would be access to a grocery ordering service or a treatment coordinator. ___Yes ___ No 7. Does your current health insurance cover your treatment costs, including prescription drugs? ___Yes ___ No ____ In full ____ In part Estimated annual out of pocket expenses $__________ 8. What services do you need that are not offered?, or what other problems would you like help addressing? Please email your completed survey to the following address: cinis99@... or bestaunt@... THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 [low dose naltrexone] SURVEY > Hi everyone. Here's a revised survey that should make it > clearer as to how it should be filled out. > > Multiple Sclerosis patients and their caregivers > > In an effort to better serve patients with MS, a strategy > team at University of Massachusetts-Lowell has been > assembled to investigate the issues and provide > recommendations. Please take a moment to answer the > following questions. We thank you in advance for your input. > > 1. Are you a newly diagnosed patient? ___Yes _X__ No > > 2. Do you currently visit an MS clinic? ___Yes __X_ No > (If No, then please skip question 3 and answer the remaining > questions in terms of services you would seek in a new > clinic) > > 3. Does your clinic meet your needs? ___Yes ___ No > > 4. Why did you select your clinic? Use a check mark to > indicate any that apply. > > ____ All necessary services are available under 1 roof > > ____ Key services are available under 1 roof > > Key services include:___________________________________ > > ____ Location / convenience > > __X__ Other: _____Reputation___________________________________________ > > > 5. Please rate the importance of the services using the > following criteria: > 1 – Not important to me, could do without, and it is simply > a convenience > 2 – A somewhat important service that I would use regularly > 3 – An essential service for my treatment that I would need > in every visit > > __2_ All services available under one roof > __3_ Availability/Ease of parking > __1_ Transportation to/from clinic > > __1_ MRI on site > __2_ On-site infusions > __2_ Emergency/walk-in appointments > _2__ After-hours help available > ___ On-site availability of the following: > __2_ Occupational Therapy > __3_ Physical Therapy > _1__ Speech Therapy > __3_ Nutritionists > __2_ Legal services > > _1__ Available mentors/support group > ___1 Help with insurance and/or social matters > ___1 Computers available for research, grocery ordering, other > > _2__ Educational opportunities > 6. Does your current clinic charge fees for any of the > (above) services? Which ones? > ___Yes ___ No > > > > > > > 7. If they did need to charge a reasonable fee to offer a > service not currently offered - would you find that > acceptable? Examples would be access to a grocery ordering > service or a treatment coordinator. > _X__Yes ___ No > > > 8. Does your current health insurance cover your treatment > costs, including prescription drugs? > ___Yes ___ No > ____ In full > __X__ In part > Estimated annual out of pocket expenses > $__________ > > > 9. What services do you need that are not offered?, or what > other problems would you like help addressing? prescriptions > > > > > > > > > Please email completed survey to the following address: > cinis99@... OR JUST HIT " REPLY " TO bestaunt@... > > THANK YOU > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 > Hi everyone. Here's a revised survey that should make it > clearer as to how it should be filled out. > > Multiple Sclerosis patients and their caregivers > > In an effort to better serve patients with MS, a strategy > team at University of Massachusetts-Lowell has been > assembled to investigate the issues and provide > recommendations. Please take a moment to answer the > following questions. We thank you in advance for your input. > > 1. Are you a newly diagnosed patient? ___Yes __x_ No > > 2. Do you currently visit an MS clinic? ___Yes _xz__ No > (If No, then please skip question 3 and answer the remaining > questions in terms of services you would seek in a new > clinic) > > 3. Does your clinic meet your needs? ___Yes ___ No > > 4. Why did you select your clinic? Use a check mark to > indicate any that apply. > > ____ All necessary services are available under 1 roof > > ____ Key services are available under 1 roof > > Key services include:___________________________________ > > ____ Location / convenience > > _x___ Other: ______I only see my neuro who does research for stem cells n MS__________________________________________ > > > 5. Please rate the importance of the services using the > following criteria: > 1 x Not important to me, could do without, and it is simply > a convenience > 2 †" A somewhat important service that I would use regularly > 3 †" An essential service for my treatment that I would need > in every visit > > ___ All services available under one roof > ___ Availability/Ease of parking > ___ Transportation to/from clinic > > ___ MRI on site > ___ On-site infusions > ___ Emergency/walk-in appointments > ___ After-hours help available > ___ On-site availability of the following: > ___ Occupational Therapy > ___ Physical Therapy > ___ Speech Therapy > ___ Nutritionists > ___ Legal services > > ___ Available mentors/support group > ___ Help with insurance and/or social matters > ___ Computers available for research, grocery ordering, other > > ___ Educational opportunities > 6. Does your current clinic charge fees for any of the > (above) services? Which ones? > _x__Yes ___ No > > > > > > > 7. If they did need to charge a reasonable fee to offer a > service not currently offered - would you find that > acceptable? Examples would be access to a grocery ordering > service or a treatment coordinator. > __x_Yes ___ No > > > 8. Does your current health insurance cover your treatment > costs, including prescription drugs? > __x_Yes ___ No > ____ In full > _x___ In part > Estimated annual out of pocket expenses > $_400________ > > > 9. What services do you need that are not offered?, cleaning lady or what > other problems would you like help addressing? don't know > > > > > > > > > Please email completed survey to the following address: > cinis99@y... OR JUST HIT " REPLY " TO bestaunt@r... > > THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Greetings! My name is Sara Hillard and I am a graduate student at Kansas State University pursuing a Master's Degree in Kinesiology. I am presently working on my thesis project which examines barrier's to moderate physical activity in women with arthritis. After a group focus study, my colleagues and I created a 41 question survey that, we hope, will help identify the broad range of barriers to physical activity in women with arthritis. In order to do this study, I will be conducting this survey on-line. I contacted Mr. , and he suggested I send out my survey link to see if anyone might be interested and willing to participate. At this time we are only looking at women that reside in the US. If you have any questions, please don't hesitate to contact me. Here is the link to the survey: https://surveys.ksu.edu/Survey/take/takeSurvey.do?offeringId=49017 Once I have collected my data, I'll be happy to post the results! Thank you for your time and help, Sara Sara Hillard Graduate Teaching Assistant Undergraduate Student Advising Department of Kinesiology Kansas State University 532-3484 & 532-0702 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2006 Report Share Posted April 15, 2006 Here's my info: Mother Age: 33 Mother occupation during pregnancy: Mom Baby: second, girl 8 lb 2 oz, 37 weeks Eye lid: blepharophimosis, severe ptosis, other health condition is fine. Genetic testing found at gene level. Medications during pregnancy: Moderate usage of Tretinoin Cream, USP .025% and Hydroquinone USP, 4%. If you need additional information please let me know. Tawnya -------------- Original message -------------- From: Kisling <luvingcook@...> My daughter was born when I was 28. My occupation: Banker 8lbs 6oz. Severe blepharophimosis. Both eyes missing skin around them. Tops worse than bottom. First surgery at 2 1/2 months old. She needed skin grafs top and bottom of both eyes. Needed tubes for tear ducts. She is now going to be 18 and having reproductive organ issues. Doctors are linking this to her condition. Let me know if you should need any further information or if I can assist in any way. Jean fxue2000 <fxue2000@...> wrote: Hi, Everyone:Here is again and I really want to start a survey which might help to distinguish the external cause for congenital blepharophimosis. Here is my information:Mother age: 29,Mother occupation during the pregnancy: ChemistBaby: second, girl, 8 Lb, 7 oz.Eye lid: blepharophimosis, right eye worse, no MG, other health condition is fine.Please give your input about your situation. Thanks. Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
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