Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Welcome Jane. I know you will get the same warm reception that I got when I joined. This group has very caring, knowledgable members. I'm sure you will find the support and information you are looking for. Hugs, Deborah aka tenacity Hello! My name is -Jane. I live in British Columbia, Canada. I'm currently caring for my 79 yr. old mother who has PAF. Her Dr. recommended I read up at the VAnderbuilt site and I noticed this support group. I know it's for MSA support but hope you'll allow me to join you and ask a fwe questions. I did some reading up on MSA and see that my mother may have a few symptoms along that line. The PAF info states that a very small percentage of patients may develop MSA. Knowing my mother, this would be just her luck. So, if it's OK for me to hang out here I would be forever grateful. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Hi -Jane, do feel welcome here. I'm caring for my wife Anne who is also diagnosed with PAF. We got some more people with PAF here. If you have any questions, don't hesitate to ask. Timo The Netherlands > Hello! My name is -Jane. I live in British Columbia, Canada. I'm > currently caring for my 79 yr. old mother who has PAF. Her Dr. > recommended I read up at the VAnderbuilt site and I noticed this > support group. I know it's for MSA support but hope you'll allow me > to join you and ask a fwe questions. I did some reading up on MSA and > see that my mother may have a few symptoms along that line. The PAF > info states that a very small percentage of patients may develop MSA. > Knowing my mother, this would be just her luck. So, if it's OK for me > to hang out here I would be forever grateful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Hi -Jane Welcome to this group, you will find lots of good information and warm hearted new friends to share your concerns with .As far as I know there are two of us in BC who post regularly but of course there may be others who just read. Aletta Mes lives in Vancouver, and I live in the interior in Revelstoke. Where do you live?It would really interest me to know how your Mother was diagnosed and by which Doc, as I have been looking for an expert in Autonomic Nervous Diseases without any success.Is your Mom living with you? My mother is 81 and lives with us only she takes care of me, rather than the other way around.I still get around OK but am dizzy all the time so between us we keep my family and home together! looking forward to getting to know you Love ,Marg Manson czdepb wrote: Hello! My name is -Jane. I live in British Columbia, Canada. I'm currently caring for my 79 yr. old mother who has PAF. Her Dr. recommended I read up at the VAnderbuilt site and I noticed this support group. I know it's for MSA support but hope you'll allow me to join you and ask a fwe questions. I did some reading up on MSA and see that my mother may have a few symptoms along that line. The PAF info states that a very small percentage of patients may develop MSA. Knowing my mother, this would be just her luck. So, if it's OK for me to hang out here I would be forever grateful.If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Hello Jane, Welcome to the group. You;ll find lots of friends heree. Dr. Ray -- Introduction Hello! My name is -Jane. I live in British Columbia, Canada. I'm currently caring for my 79 yr. old mother who has PAF. Her Dr. recommended I read up at the VAnderbuilt site and I noticed this support group. I know it's for MSA support but hope you'll allow me to join you and ask a fwe questions. I did some reading up on MSA and see that my mother may have a few symptoms along that line. The PAF info states that a very small percentage of patients may develop MSA. Knowing my mother, this would be just her luck. So, if it's OK for me to hang out here I would be forever grateful.If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Marg: Thanks for the kind and warm response. I will admit to living in Surrey! My mother was diagnosed by a Dr. Bob Rangno at UBC. He is a clinical pharmacologist who teaches there as well as sees patients. I'm not sure how my mother wound up being referred to him. It was 6-7 years ago. She'd had a pacemaker installed about that time and once they finally got it regulated, it didn't clear up all the symptoms they were hoping it would. So from there she ended up at Dr. Rangno's who put 2 + 2 together when she told him she didn't sweat. He is the NICEST man. Since I've taken over all of Mom's health concerns, I have been learning as much as I can about PAF. He really will take the time to talk to you over the phone or in his office. Mom says he never appears rushed and just sits and talks. Since women are less commonly afflicted with PAF, he is quite interested in keeping tabs on Mom and how she's doing. I sent him off an e-mail about 2-3 months ago. He phoned me back the next day and spoke with me for nearly an hour. He is very interested in educating as many people as possible about this disease. Here is the URL to his page out at UBC: http://www.pharmacology.ubc.ca/rangno/Rangno.html Send him an e-mail. Let him know that you met -Jane, 's daughter, through this e-mail suppport group and he'll almost certainly get the connection. My mother moved in with us just a couple of months ago. Last Sept. she tried making the transition from her home of 46 years to a senior's facility (where she lived independently), but found apartment living was something she couldn't adapt to. She started getting pretty depressed, especially when we had to take her much-loved dog into our home as it got too much for her to walk her 3 times a day. So, in the end, I closed my family child care and she came to live with us. She is very lucky in that she can live quite well with PAF. The hardest part now is that her memory is going. I have had to take over the medication for her as she sometimes forgets when, and if, she's taken it. Most days she does quite well, but some days her head is just not working and she really has a bad day. She was so active and busy all the time that it's hard for her to accept that she has to slow down and live within the boundaries of PAF. It really gets her down. I've finally got her drinking the 2 cups of water which helps a lot. Once she realized the benefits, she's been much better about it. Her life is complicated in that she had a small stroke about 2 years ago, which has left her vision a bit " off " , plus her memory is definitely not what it was. She has another small affliction that is more annoying than anything else, but it all adds up to getting her down at times. I see I've rambled on long enough on a rainy Monday morning. -Jane ********************************************* When I was younger I could remember anything, whether it happened or not. Mark Twain ********************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Thanks for the welcome! -Jane ********************************************* When I was younger I could remember anything, whether it happened or not. Mark Twain ********************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Hi -Jane Thanks for your information on Dr Rango,I didn`t know Pharmacologists where also Physicians but in any case it`s always good to know the names of Docs wno are interested and prepared to spend time with people .! have a very good Respiratory Doc in Kelowna but have yet to find a Neurologist who is interested in SDS,which is what I may have.To morrow I`m packing my bags for a trip home to the UK(although Canada is my chosen home).I will see a specialist there who hopefully may be of help in getting a firmer diagnosis and some direction for treatment.Hopefully when I get back we can get to know each other .I`m 55,A Physiotherapist ,still working part -time ,but struggling more than a little to keep on working ! I have 3 children,1 son and 2 daughters.one daughter -15 is still at home and giving her Mom a few grey hairs! What a blessing our families are ! Give my love to your Mom and I`ll be in touch when I get back Love Marg Manson -Jane Garnett wrote: Marg:Thanks for the kind and warm response. I will admit to living inSurrey! My mother was diagnosed by a Dr. Bob Rangno at UBC. He is aclinical pharmacologist who teaches there as well as sees patients. I'mnot sure how my mother wound up being referred to him. It was 6-7 yearsago. She'd had a pacemaker installed about that time and once theyfinally got it regulated, it didn't clear up all the symptoms they werehoping it would. So from there she ended up at Dr. Rangno's who put 2 +2 together when she told him she didn't sweat.He is the NICEST man. Since I've taken over all of Mom's healthconcerns, I have been learning as much as I can about PAF. He reallywill take the time to talk to you over the phone or in his office. Momsays he never appears rushed and just sits and talks. Since women areless commonly afflicted with PAF, he is quite interested in keeping tabson Mom and how she's doing. I sent him off an e-mail about 2-3 monthsago. He phoned me back the next day and spoke with me for nearly anhour. He is very interested in educating as many people as possibleabout this disease.Here is the URL to his page out at UBC:http://www.pharmacology.ubc.ca/rangno/Rangno.htmlSend him an e-mail. Let him know that you met -Jane, 'sdaughter, through this e-mail suppport group and he'll almost certainlyget the connection.My mother moved in with us just a couple of months ago. Last Sept. shetried making the transition from her home of 46 years to a senior'sfacility (where she lived independently), but found apartment living wassomething she couldn't adapt to. She started getting pretty depressed,especially when we had to take her much-loved dog into our home as itgot too much for her to walk her 3 times a day.So, in the end, I closed my family child care and she came to live withus. She is very lucky in that she can live quite well with PAF. Thehardest part now is that her memory is going. I have had to take overthe medication for her as she sometimes forgets when, and if, she'staken it. Most days she does quite well, but some days her head is justnot working and she really has a bad day. She was so active and busy allthe time that it's hard for her to accept that she has to slow down andlive within the boundaries of PAF. It really gets her down. I'vefinally got her drinking the 2 cups of water which helps a lot. Onceshe realized the benefits, she's been much better about it. Her life is complicated in that she had a small stroke about 2 yearsago, which has left her vision a bit "off", plus her memory isdefinitely not what it was. She has another small affliction that ismore annoying than anything else, but it all adds up to getting her downat times.I see I've rambled on long enough on a rainy Monday morning.-Jane*********************************************When I was younger I could remember anything, whether it happened or not. Mark Twain*********************************************If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Hi -Jane, It is so nice to meet you. I am glad that you found us but sorry for the need to find us. There is so much information and help that you can get from this site. Everyone in here will be there for you. We are here for you even if you just need to talk about different situations, problems, anything that is bothering you, or if you just want to say hi and something good that is going on. I am sure someone on here will be able to tell you they have been through the same thing at one time or another. This is a wonderful, loving, great bunch of people. Welcome again and God bless, Belinda > Hello! My name is -Jane. I live in British Columbia, Canada. I'm > currently caring for my 79 yr. old mother who has PAF. Her Dr. > recommended I read up at the VAnderbuilt site and I noticed this > support group. I know it's for MSA support but hope you'll allow me > to join you and ask a fwe questions. I did some reading up on MSA and > see that my mother may have a few symptoms along that line. The PAF > info states that a very small percentage of patients may develop MSA. > Knowing my mother, this would be just her luck. So, if it's OK for me > to hang out here I would be forever grateful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Marg: I simply cannot imagine going through what so many on the list go through on a daily basis. Talk about needing major coping skills. I hope your trip to the UK was successful, even if it was just a good holiday seeing old haunts and friends/family. ) In 1975/76 I spent time in Putney (South London) being a Mother's Help. Not one of the highlights of my life, but an experience none-the-less. I loved England and went back again for a visit in 78. I made good friends with an English nanny. We still correspond all these years later. She has been over here twice to visit. I long to get back one day to visit her again and take my family to see such a beautiful country. I also have a 15 yr. old daughter and one who will be 13 in about 6 weeks. I am 51. I have a wonderful husband and my Mom is doing pretty well. PAF is not a serious illness like so many on the list are suffering. It's mostly a pain in the butt to live with. One of the hardest things for me is to see my Mom in her day-to-day activities and have the realization hit me that she really is aging, slowing down and having periods of confusion. The confusion is the hardest part to watch. Wanting to offer help, but knowing she needs to fiddle around for awhile before I offer. She gets a bit testy if I jump in too quickly to take over. I need to take naps when she does! I find she's up and raring' to go about 5pm just when I'm starting to slow down and face making dinner. NOT my favourite task. ) And with me being menopausally warm all the time, her lack of circulation makes for interesting times around here. Her rooms are downstairs where it's MUCH cooler than upstairs. She wears a lot of layers of clothes, while I'm down to shorts and a tank top most days. It's going to be interesting this winter. We'll have to have the gas fireplace on downstairs for her, which is fine. She paid for it a few years ago. She stayed with us over Christmas and it happened to be a cold one. We were trying to keep a wood fire burning down there to keep it warm-ish, but it was so much work. She offered to pay for a gas fireplace so we took her up on it. On the bright side. She had her pacemaker replaced 6 weeks ago. We went for the 6-week check-up last week which went very well. Her new pacemaker has a neat feature that allows her heart to speed up when she exerts herself, such as climbing the stairs or walking up hills, etc. It really seems to be helping her out. I don't know why this feature wasn't activated when they put the darn thing in, but we sure are glad the cardiologist talked about it at the check-up. It was almost an afterthought on his part. I wonder if Dr. Rangno has become an expert on this disorder simply because it can only be controlled by medication and learning to live within it's restrictions? Since pharmacologists know so much more than physicians about medications and what they do, perhaps that's why he's so knowledgeable about PAF. He told me that once he's seen the patient and made the diagnosis, he prefers to stay in the background and trade information with the family dr. He also is very big on the importance of educating the family about the disorder as they have to understand how it works and ensure that the patient isn't treated for symptoms that shouldn't be treated. Such as my Mom was on iron pills forever. Yet it's typical of someone with PAF to have lower-than-normal iron, yet taking the pills will not raise the iron. Since PAF patients also tend to be constipated they definitely do not need to be taking iron unecessarily. Or to be treated for high blood pressure because it was taken while they were lying down. Looking forward to hearing from you when things settle down after your trip. -Jane -- ********************************************* When I was younger I could remember anything, whether it happened or not. Mark Twain ********************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2002 Report Share Posted December 13, 2002 Welcome to the group Sharon. Sounds like you are doing well. Feel free to ask questions. Lori Owen - Denton, Texas CHF 4/14/01 479 lbs. SRVG 7/16/01 401 lbs. Current Weight 302 lbs. Dr. Ritter/Dr. Bryce On Thu, 12 Dec 2002 15:55:20 -0800 (PST) Sharon Shelman serenitywon@...> writes: > > Hello, > > My name is Sharon S. I had surgery 6/26/01 at UCLA. Dr.Sawicki is > my Dr. > > My starting weight was 313.5 . I am currently 220.. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2003 Report Share Posted November 8, 2003 Hi Naomi, welcome to the group!!!!! I have found that everyone here is very knowledgable and willing to help in any way they can!!!!!! When do you see your doc? Keep us posted........sherri in Pa Introduction Greetings to everyone in this group. My name is Naomi, and I live in Vermont. A friend of mine sent me some information about your group, and I have decided to check it out. I have been in the bariatric program at Dartmouth Hitchcock in New Hampshire for over a year. The only step I have left to take before undergoing the gastric bypass, is to meet with the surgeon at which time I will be given a surgery date. I'm realizing that despite the fact that I have researched this to a fair extent, there is so much that I do not know. It is my hope to learn as much as possible about what to expect after surgery (taking into consideration of course that everyone is different and therefore have different issues). In any case, I look forward to getting to know all of you in the group. Blessings and Peace, Naomi Quote Link to comment Share on other sites More sharing options...
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