Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Hi Bill, Sorry for such a delay-been busy. Actually, I don't know ANYONE in Saudi Arabia with MS. Since Saudi Arabia is such a warm country, the incidence of MS is so low that it's classified as a rare disease. I am not under the care of any doctor because I can't get hold of my films from Canada, he wants to " rediagnose me " ...you know-milk me financially dry and repeat every test that was already done on me to prove a diagnosis...I can't afford it and I'm not putting myself through that again. I couldn't afford the MS meds anyway since they are so expensive and almost impossible to find so what's the point? He was arrogant enough to refuse to treat me for obvious symptoms because I didn't want another MRI. His excuse that he wanted to treat the whole disease, not just the symptoms...but isn't that the problem with MS? Most of the time, it's only the actual symptoms that you're able to treat. Anyhow, with this pregnancy, no more Neurontin for me..sigh-I feel like I'm going mad! I suspect that I'm progressive-relapsing since I don't really come back to baseline. It doesn't seem to be severe but it's usually in a downward trend..sigh. Sorry for complaining, no one else to do it to here. (smile). At 10:26 PM 7/8/2004, you wrote: I had kind of over looked you were now in Saudi Arabia right at the moment. Have you met others in that country that also have MS and do you have trouble getting the different kinds of meds? After I was diagnosed with my MS in Aug of 99 I was hoping for a fast recovery so I could get back to walking again. The recovery never happened and still waiting who knows maybe I will get my balance back some day. When I was new to MS I did not know anything about MS and would ask people when there recovery takes place hoping someone knew a secret to getting back on my feet. I found out there are no secrets to this disease it treats us all so differently. I think you are our first member who is in the middle east. Bill new member Hi there, My name is and I'm a Canadian living in the Middle East. I've been lurking around for a few days and am happy to find such a positive, interesting list. What state of country are you in? Saudi Arabia-but from Canada (Quebec) How long have you had MS? I've had symptoms since I was 18 (8 years) Diagnosed 3 years ago. What meds do you take for your MS? None-I'm pregnant so had to stop taking neurontin. Interferons are too expensive and almost not available in this country. What kind of troubles do you have with your MS? tingling in extremities, optical neuritis, shaking hands, balance problems, slurred speech, fatigue Are you still working a job? kinda If you still work does the MS make your job performance poor? I've had to quit yet another job (as a teacher) because of a bout of optical neuritis. Now that I'm pregnant, I'm just taking it easy and staying home. I give private tuition to earn a little money. Did getting MS force you to quit a job? Yes it has, indirectly Are you on disability through Social Security? I was when I was in Canada Are you trying to get Social Security? no What other health condition do you have besides MS? type 1 diabetes (thanks to the steroids) Do you get good family support to help you with your MS? not really If you are on disability what kind of things do you do to keep your self busy? Origami, sewing, internet , writing newspaper articles when assignments are available Add your own personal info I'm married and 5 months pregnant with what will hopefull.y be my first child. I enjoy living out here but as you can imagine, the heat can really get to you here. Thank God for air-conditioners! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Hello, My name is Helen and I live in Buckinghamshire, England. My father has got LBD and my mother is currently his full time carer. I do not live that close to them so can only offer an element of support over the phone. I joined the group mainly to find out about other peoples experiences and hopefully to offer some support to my mum. Thanks Helen Helen Knight Delicatessen Estrella Tel: 01296 711073 Mobile: 07814 437390 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Welcome to the board Helen. I hope that you find the information on this site useful to you. There's plenty of things you can do for your folks even from a distance. Learning about the disease is just one example. Researching and/or searching information for your parents will help. It takes time and with your mom being a 24/7 caregiver, there isn't much time. There's also home delivery services that are available - maybe even in your neck of the woods. Possibly being the person to order and have delivered supplies would be beneficial. Just being there emotionally for your parents is wonderful - so I'm glad you're here. Have you seen the UK Lewy Body site? Done by ? I'd recommend your signing up for her newsletter. She's done a wonderful job in spreading awareness in the UK. Here's the website: http://www.lewybody.org/ There are 2 doctors in my mind who are truly the experts about the disease: Dr. Bradley Boeve in MN, USA, but we mustn't forget your very own Dr. Ian Mc in the UK - are you lucky enough to be near him so that your father is able to see him and/or members of his team? I have him on my list of doctors at home - and if you need that information I can provide for you - there are several doctors in the UK who are lewy-savvy b/c of their articles about LBD... Anyway - welcome to the board. And let me know if you're interested in a list of those doctors in the UK. > > Hello, My name is Helen and I live in Buckinghamshire, England. My father has got LBD and my mother is currently his full time carer. I do not live that close to them so can only offer an element of support over the phone. I joined the group mainly to find out about other peoples experiences and hopefully to offer some support to my mum. > > Thanks > > Helen > > > Helen Knight > Delicatessen Estrella > Tel: 01296 711073 > Mobile: 07814 437390 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Hi, Helen, I am so glad you found us - welcome! I am very sorry that your dad has LBD. Even though you don't live that close to your parents, you will be a big help to your mom by learning things about LBD. Many doctors don't know much about it, and you will find a lot of great information in this group. Let us know how things are going along the way. Hugs, Piper **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Is there a list of Doctors who specialize in Lewy Body? I live in Ocala Florida, and I have never seen the name Lewy Body in any of the advertisements. June M **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 A big warm Welcome, Helen. I am glad your mother has a concerned daughter. Your mother has her hands full. LBD can wreck the caregiver's health. It is refreshing to see you want to lighten your mother's load with ways to understand this disease, and hints to make it easier through understanding. Your signing up proves your care and concern. Bless you. May you get all the answers you are seeking, and find this as warm and loving a family as I have. Love a lot, Imogene Caregiver for my true Texas Gentleman Husband of 37 years. First diagnosed with Alzheimer's by a Neurologist OCT, 2005. But, on May 2, 2006 Dr. Schillerstrom, Geriatric/Psychiatrist diagnosed LBD with Parkinsonism. My precious husband, Don, is taking Zoloft and Razadyne. A happy personality is contagious. Infect someone today. In a message dated 3/18/2008 6:53:20 AM Central Standard Time, john.helen666@... writes: Hello, My name is Helen and I live in Buckinghamshire, England. My father has got LBD and my mother is currently his full time carer. I do not live that close to them so can only offer an element of support over the phone. I joined the group mainly to find out about other peoples experiences and hopefully to offer some support to my mum. Thanks Helen Helen Knight Delicatessen Estrella Tel: 01296 711073 Mobile: 07814 437390 **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 I'm currently working on a list, but it's still a work in progress. For now I'm only comfortable listing those doctors who have written articles about LBD. Here's what I've posted in the past for Florida. Are any of these close to you? What major city are you close to? http://health.groups.yahoo.com/group/LBDcaregivers/message/70488 http://health.groups.yahoo.com/group/LBDcaregivers/message/70498 http://www.mayoclinic.org/neurology-rst/behavneuro.html http://health.groups.yahoo.com/group/LBDcaregivers/message/70523 http://health.groups.yahoo.com/group/LBDcaregivers/message/70525 > > Is there a list of Doctors who specialize in Lewy Body? I live in Ocala > Florida, and I have never seen the name Lewy Body in any of the advertisements. > June M > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 June, my sister lives there in Ocala. But, she doesn't know about any doctors either. You might call the hospital. Yellow pages? Love a bunch, Imogene In a message dated 3/18/2008 4:00:44 PM Central Standard Time, MengelFl@... writes: Is there a list of Doctors who specialize in Lewy Body? I live in Ocala Florida, and I have never seen the name Lewy Body in any of the advertisements. June M **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 June M., My mom and dad live in Orlando and he has been to Dr. Graff-Radford at Mayo in Jax which isn't too far from Ocala (maybe 2 hours) if you wanted a consult type visit. In Orlando, he sees Dr. Hal Pineless who is knowledgable about LBD (but tends to be a bit 'my way or the highway' in his dealings with family). He has a PA (Glenn) however who is knowledgable and much more family friendly. Your best bet (though it kills me to say this being an avid Seminole from Florida State) might be to contact the neurology dept at Shands Hospital in Gainesville. That's about 40 minutes north of you. Good luck in your search. Dianne P daughter of Bill, 84 wrote: I'm currently working on a list, but it's still a work in progress. For now I'm only comfortable listing those doctors who have written articles about LBD. Here's what I've posted in the past for Florida. Are any of these close to you? What major city are you close to? http://health.groups.yahoo.com/group/LBDcaregivers/message/70488 http://health.groups.yahoo.com/group/LBDcaregivers/message/70498 http://www.mayoclinic.org/neurology-rst/behavneuro.html http://health.groups.yahoo.com/group/LBDcaregivers/message/70523 http://health.groups.yahoo.com/group/LBDcaregivers/message/70525 > > Is there a list of Doctors who specialize in Lewy Body? I live in Ocala > Florida, and I have never seen the name Lewy Body in any of the advertisements. > June M > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 How about University of Florida-Shands? Likely that there is some research going on there and you are only about an hour away. You would have a real chance to help educate a new group of med students. We have used the dental and vet programs at UofF and been very pleased, and we live almost 5 hours away! A thought! Carol ville Mayo Clinic is not so far, either. --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Welcome Helen, has already given you your UK organization. Hope you can connect with those who are in your area. One thing that was so important to me while I was caregiving with my Mom, was when my daughter was available to just listen. Or to listen and help me make decisions I couldn't make as I had Mom to close and couldn't make a call or whatever. It is a hard job to " just " listen. Sometimes I was just upset and my daughter must have really had to be so caring to me as there was really nothing she could do. She and I both knew it. (And we only lived a mile apart.) And mostly I asked her to just let me vent as Mom as doing her Lewy thing and I was having a hard time. Sometimes when I was really at the end of my rope, she would come and get Mom. I don't know what arrangement you can make to occasionally visit your Mom, but I am sure it will be helpful.. Does she have any help at all? There are services you may need to help her find if you can't be there. Just some thoughts as I read your message. Hugs. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. New member Hello, My name is Helen and I live in Buckinghamshire, England. My father has got LBD and my mother is currently his full time carer. I do not live that close to them so can only offer an element of support over the phone. I joined the group mainly to find out about other peoples experiences and hopefully to offer some support to my mum. Thanks Helen Helen Knight Delicatessen Estrella Tel: 01296 711073 Mobile: 07814 437390 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 The following has not been confirmed as Lewy-savvy but in Gainesville and Ocala. My suggestion would be to call and find out if there are doctors in the facility who is familiar w/ LBD: Memory and Cognitive Disorders Clinic, University of Florida M. Heilman, M.D. & Leilani Doty. Ph.D. 2000 S.W. Archer Road Third Floor P.O. Box 100383 Gainesville, FL 32610 Fax: http://www.neurology.ufl.edu/memory/contact.shtml -same but slightly different address - University of Florida, Memory Disorder Clinic M. Heilman, MD and Leilani Doty, PhD Department of Neurology, Box 100236, McKnight Brain Institute, Newell Drive Gainesville, FL 32610-0236 Fax: heilman @neurology.ufl.edu (no spaces) http://www.neurology.ufl.edu/ --same doctor in the movement disorders clinic-- Univeristy of Florida, Movement Disorders Center Heilman, MD 100 S. Newell Drive PO Box 100236 Gainesville, FL 32610-0236 Fax: heilman @neurology.ufl.edu (no spaces) http://mdc.mbi.ufl.edu/contact.htm (I also search Heilman w/ Lewy and an article came up w/ Lewy body international workshop - but couldn't read b/c you need to log in to read the medical paper - could mean that he was part of the workshop or an audience member or someone who posed a question. With the above info + this info I have good feelings about Heilman. Definitely call the school - I'm sure if he isn't the one who treats LBD, someone there does.) Here's one listed in Ocala - but no website, not much info - but worth a call. Ocala Neurodiagnostic Center A. Gaudier, MD 1901 SE 18th Avenue, Building 400-A Ocala, FL 34471 Fax: > > > > Is there a list of Doctors who specialize in Lewy Body? I live in > Ocala > > Florida, and I have never seen the name Lewy Body in any of the > advertisements. > > June M > > > > > > > > **************Create a Home Theater Like the Pros. Watch the video on > AOL > > Home. > > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? > ncid=aolhom00030000000001) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Hi, June! Welcome to the family! My parents lived in Ocala from 1986 until 2000. Most of that time they were on NE 25th Avenue. For the last year or two, though, they moved into a mobile home park called Foxwood. Are you familiar with those areas? We miss visiting Ocala. It is so beautiful there. My Mom is now here in PA with me and has LBD. My Dad passed away in 1999 and is buried in the FL National Cemetery in Bushnell. I think its the most beautiful Cemetery I've ever seen. It was his expressed wish to be buried there. Gladys -- Re: Re: New member Is there a list of Doctors who specialize in Lewy Body? I live in Ocala Florida, and I have never seen the name Lewy Body in any of the advertisements. June M **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Hi! A further tidbit of info: The U of FL also is site of the MDs who are national experts on PD, including the LBD " component. " I believe there are 4 key docs - they also manage the " Ask The Doctor " forum that's part of the National Parkinson Foundation, which itself hosts a major web site. Before I found our site here, I relied heavily on their info. Everything they wrote about related to the LBD aspect has been borne out by what I''ve now learned here. I'm not sure which U of FL site they're at, but that should be easily traced. Lin wrote: The following has not been confirmed as Lewy-savvy but in Gainesville and Ocala. My suggestion would be to call and find out if there are doctors in the facility who is familiar w/ LBD: Memory and Cognitive Disorders Clinic, University of Florida M. Heilman, M.D. & Leilani Doty. Ph.D. 2000 S.W. Archer Road Third Floor P.O. Box 100383 Gainesville, FL 32610 Fax: http://www.neurology.ufl.edu/memory/contact.shtml -same but slightly different address - University of Florida, Memory Disorder Clinic M. Heilman, MD and Leilani Doty, PhD Department of Neurology, Box 100236, McKnight Brain Institute, Newell Drive Gainesville, FL 32610-0236 Fax: heilman @neurology.ufl.edu (no spaces) http://www.neurology.ufl.edu/ --same doctor in the movement disorders clinic-- Univeristy of Florida, Movement Disorders Center Heilman, MD 100 S. Newell Drive PO Box 100236 Gainesville, FL 32610-0236 Fax: heilman @neurology.ufl.edu (no spaces) http://mdc.mbi.ufl.edu/contact.htm (I also search Heilman w/ Lewy and an article came up w/ Lewy body international workshop - but couldn't read b/c you need to log in to read the medical paper - could mean that he was part of the workshop or an audience member or someone who posed a question. With the above info + this info I have good feelings about Heilman. Definitely call the school - I'm sure if he isn't the one who treats LBD, someone there does.) Here's one listed in Ocala - but no website, not much info - but worth a call. Ocala Neurodiagnostic Center A. Gaudier, MD 1901 SE 18th Avenue, Building 400-A Ocala, FL 34471 Fax: > > > > Is there a list of Doctors who specialize in Lewy Body? I live in > Ocala > > Florida, and I have never seen the name Lewy Body in any of the > advertisements. > > June M > > > > > > > > **************Create a Home Theater Like the Pros. Watch the video on > AOL > > Home. > > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? > ncid=aolhom00030000000001) > > > > > > Quote Link to comment Share on other sites More sharing options...
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