Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 live in WA, with my Dear Marilyn-Welcome to the group. My name is Janet G and my husband Pete has RP..diagnosed in 1998 at age 60. Have you seen Jane Buckner,MD in Seattle??she is doing research and is located at Virginia Mason Research Center. You have found a wonderful group..lots of RP info, caring ,sharing laughter and tears....welcome and feel free to share JanetG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hi Mailyn, Welcome to the RP. list. I am looking forward to learning more about you. What meds are you taking? How does the RP. affect you? Looking forward to hearing from you again. Hugs, Sandy ----- Original Message ----- > Hello, > > I am new to the list and would like to hear from others with RP. I was > diagnosed in May and things have really gone down hill, fast. I am 58, > live in WA, with my husband, son, and 2 fur children (cats, Rambo and > Sammy). My hobby is genealogy. > Happy New Year to all. Marilyn > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hi Marilyn, I'm and I live in California. I'm 49, married and have 3 daughters , a grandaughter and a dog! I was dx with Rp in May of 99 and had had symptoms for a year before that. Started with ears flaring. Was put on prednisone and vioxx. Then in Jan of 2000 was put on methotrexate and pred. I just stopped the metho and am going to try Imuran. Still on pred. What are your symptoms and what meds are you on? I'd like to welcome you to the greatest group ever. These people are not just friends, the become family. They will pick you up when you are down, find an answer to ANY question that you have and make you LAUGH alot!!!! As our dear Heidi would say, " RP is only part of our lives " . I'm glad that you found us and please ask all the questions that you want. There is never a dumb question, this is how we all learn and keep on learning. Also, it refreshes the memories of us who tend to forget.LOL Welcome again, can't wait to get to know you!! Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hi Marilyn :-) Welcome to our cozy group! As the others have probably said, it's nice to have you here, but not nice about the RP. Yes, it's pretty scary.....but hopefully you will find out that there is a lot you and your doctors can do to kick this RP right out the door. We're starting a new year here and our primary goal is to give the RP a good KICK! At this point, I don't even know if I do have RP....but in comparing notes with some of the great people here, I would be surprised if I don't. An ENT suggested it as a possibility. In addition I also have another connective tissue/autoimmune disease called dermatomyositis. (It affects the muscles and skin) I think 30% of RP people also have another connective tissue disease along with their RP. Where do you live in WA? I live in the eastern half...in Richland. Maybe we can get together sometime. That reminds me....the group, and mostly our wonderful Heidi, is planning a get-together this Labor Day Weekend. It will be in the Tulsa, OK neighborhood. I'm still trying to make it...and I'm watching for an airline sale! Hopefully, you can come to Okie-land, as we lovingly call Heidi's second home :-) Anyway, take care and I look forward to hearing from you. lots of hugs, Connie H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Marilyn Welcome to the group. Please post and feel free to ask all the questions you would like to know. Someone in the group will answer you or point you in the right direction. I have been a member since August and have learned sooo much from everyone. This group is the greatest group of people you will ever get to know. There is always someone here to listen to you. We cut up and we cry on each others shoulders. So please post and let us know more about you. My name is Glenda and I live in Springfield,Oregon. I am 44 yrs old and have had RP for over 7yrs. I take Imuran(immunosurpressant). Due to the Imuran I take multiviatimin and calcium to make up for what I don't get. I am a mother of two grown children and am raising my 5yr old granddaughter. I lead a fairly normal life(whatever normal is) and work a 40plus hour week job. RP has effected my ears, nose and exterior area of my chest(ribs). It is in a few other areas too but it never flares in the same place. Goes from one to another. Hope this helps you to feel a little less scared. When we are first diagnosed it is pretty scary what the dr. tell us. Yes RP is serious but not as drastic as some of the information that we read about. Where in Washington do you live. There are a few people in the group that live in Washington also. Take cared and keep posting so we can get to know you! Lots of Love Glenda __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Hi Welcome to the group, my name is Donna I live in CA and have had RP for many years, I got DX about two years ago when I started with lung involvement. Im in a flare now and take Medrol, Enbril, Methotrexate plus use a nebulizer 3 time a day and I am on Oxygen 24 hours a day. However, I do un hook offen and there are times during the day that I can breath fine. It affects everyone differently and I don't want to scare you. When I am not in a flare up no one would guess that I had any medical problems Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Hi Marilyn and Everyone, Been away for a little, but HAPPY NEW YEARS. Welcome Marilyn glad to have u w/us. Sorry that u have RP and u are having problems. However, Welcome to the family. Marilyn I was reading your post re: Metho, I have been on Metho since Nov, 1999. I'm on 25 mg. (10 pills a week). I'm doing pretty good except for the tiredness u get after taking it. At first I was losing my hair, but it seems that my body is now adjusting to the med. I also take pred. (Alternating doses 15 to 20) and a host of other meds. Yes, I still have a little pain, however, I'm doing much better than I was in June 1999 when I was dx. Hope this info has helped u and once again welcome! Everyone, In the last past 3 wks, I have discontinued diary products in my diet, and make sure that I drink 8, eight oz. of water a day, and honestly, I think I'm feeling a lot better than I was before. However, I saw a new ENT doc and he gave me med for a fungus infection that went down my trachea. He was hoping that I might be able to get my voice back after taking med. If it does, he has to do a biopsy. I hope he doesn't think I'm going to let him take this biopsy in his office. I never could tolerate the intrusion in my throat. Well, anyway my appt is on 1/8/01. Oh, I'm seeing a new derm, regarding my leg. I was told by my Internist that she was very good, she's a little distance away from my area, but I'm going to give her a try. What the heck, what do I have to lose. This leg has been bothering me since Jan. 2000. Other than that I'm doing pretty good. My sister's kid is doing great! I'm very happy for her. Well, I know it's been sometime since I posted and gee it seems as if I can go on and on. However, I know ur tired and reading, so I will stop typing and I'm hoping everyone will have a GOOOOOOD YEAR! Love, RENE' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 In a message dated 1/2/01 3:17:47 PM Pacific Standard Time, RTI2264@... writes: << However, I know ur tired and reading, so I will stop typing and I'm hoping everyone will have a GOOOOOOD YEAR! >> Rene', I'm never tired of reading your posts!!! So good to have you back. Hope you were having fun where ever you were.LOL Missed you a whole bunch!! Glad to hear that you are doing so well. I've heard the dairy thing before. I go in spurts, crave dairy, don't want any. Think I'll give it a try, thanks. Yes, Heidi, I will still keep taking my calcium!!! LOL Rene' you can't just disappear on us, we worry! Glad you are back,keep sending those posts (and you can go on and on, I love hearing from you) Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Hi Marilyn, I was also diagnosed in May this year. Are you in Washington state? I live in British Columbia, Canada. I have two children too, but only one has fur. You've found a wonderful support group, everyone here is really helpful with Rp information and just plain old support for the ups and downs of life. What type of meds are you on? Do you know that Dr. Buckner at Virginia Mason in Seattle is studying Rp. Her email address is jbuckner@... Welcome to the group. Take care and be well, Elaine New member Hello, I am new to the list and would like to hear from others with RP. I was diagnosed in May and things have really gone down hill, fast. I am 58, live in WA, with my husband, son, and 2 fur children (cats, Rambo and Sammy). My hobby is genealogy. Happy New Year to all. Marilyn DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Welcome Marilyn. This group is great. You will benefit greatly ! Unfortunately I don't have that much time to post or read the many posts. I need to get hooked up at home. Rene thank you for the update on your diet. I will mention that to Brett. He is always looking for things that will help. Fondly, B. At 05:01 PM 1/2/2001 EST, you wrote: >Hi Marilyn and Everyone, > >Been away for a little, but HAPPY NEW YEARS. > >Welcome Marilyn glad to have u w/us. Sorry that u have RP and u are having >problems. However, Welcome to the family. > >Marilyn I was reading your post re: Metho, I have been on Metho since Nov, >1999. I'm on 25 mg. (10 pills a week). I'm doing pretty good except for the >tiredness u get after taking it. At first I was losing my hair, but it seems >that my body is now adjusting to the med. I also take pred. (Alternating >doses 15 to 20) and a host of other meds. Yes, I still have a little pain, >however, I'm doing much better than I was in June 1999 when I was dx. > >Hope this info has helped u and once again welcome! > >Everyone, In the last past 3 wks, I have discontinued diary products in my >diet, and make sure that I drink 8, eight oz. of water a day, and honestly, I >think I'm feeling a lot better than I was before. > >However, I saw a new ENT doc and he gave me med for a fungus infection that >went down my trachea. He was hoping that I might be able to get my voice back >after taking med. If it does, he has to do a biopsy. I hope he doesn't >think I'm going to let him take this biopsy in his office. I never could >tolerate the intrusion in my throat. Well, anyway my appt is on 1/8/01. Oh, >I'm seeing a new derm, regarding my leg. I was told by my Internist that she >was very good, she's a little distance away from my area, but I'm going to >give her a try. What the heck, what do I have to lose. This leg has been >bothering me since Jan. 2000. Other than that I'm doing pretty good. My >sister's kid is doing great! I'm very happy for her. > >Well, I know it's been sometime since I posted and gee it seems as if I can >go on and on. However, I know ur tired and reading, so I will stop typing >and I'm hoping everyone will have a GOOOOOOD YEAR! > >Love, >RENE' > >Attachment Converted: " c:\eudora\attach\ReRpoly5 " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Hi Mareilyn, my name is Judy O. When I was dx with RP, I was terrified -m thought I'd be dead in months. Now I find you and I can live with it. It can't be cured, but it can be controlled. You'll learn so much with this group, they are a great support system! I can't believe how scared I was, and now I can laugh about the funny things that happen and just enjoy the bright sun (not too bright in Chicago), the blue sky, birds, squirrels and everything on God's beautiful earth. You'll find one of the things you'll be most grateful for is the love and acceptance you'll get for this great group. Smile, you'll be OK, honest. LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Hi Dawn, Welcome to the RP family. Sorry to hear you have RP but glad you found us. This is one wonderful bunch of people! I'm looking forward to your posts and getting to know you better. Hugs, Sandy from Ohio > Hi all, > we have a new member that just joined our wonderful family and I'd like you > all to give her a warm welcome. > Her name is Dawn and she lives in West VA, we are practically neighbors. :-) > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.219 / Virus Database: 103 - Release Date: 12/5/00 > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Dawn, welcome to the most wonderful group there is. Please feel free to ask all the questions you want, rant, rave, laugh or whatever your need is. Someone will always be here for you, In fact there will always be alot of us. I'm with you on the ear thing.......Lets all give them back.LOL Please tell us a little about yourself and your RP. I live in California, am 49, married and have 3 daughters and a grandaughter. Trying to find a good rheummy right now. Was on metho for one year and just went off. Getting ready to start Imuran. Also take Prednisone. RP can effect all of us in different ways and we all respond to different meds. Just feel free to jump right in and ask questions or share your information with us. This is how we all learn. Glad to have you with us and looking forward to getting to know you better. Hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 Welcome, Dawn. You've found the best support group in the world! If you've got questions, you will be amazed at the knowledge they have! My doctors don't always know the answers to the questions I learn to ask from this group! They are incredible, loving and so supportive, you'll feel like you've come home. Welcome, welcome, welcome. Message and suggestion to everyone, I got a email from some friends from work who had a brilliant suggestion oif what we can all do with the beautiful Christmas cards we got onver the holidays. St. Jude's Ranch for Children uses old cards to make new ones. Sso they ask that you send your old cards to the following address: St. Jude's Ranch for Children 100 Sst. Jude Street Boulder City, NV 89005 Is't that a great idea? I'm sure they take more than just Christmas cards, there's Valentines Day, Easter, Birthday, ets. Something we can all do for someone else. Hope you give it a try. LOL, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Welcome JJ! Glad to have you aboard our support group. Congratulations on your soon upcoming surgery. Who are you having perform the procedure? Dorian Open DS 2/06/01 Dr. Elariny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 > Can you say more about what he > told you about the surgery he will be doing? > > Sure , In laymans terms he is taking out 75% of my stomach and > by-passing all but 6 feet of my lower intestines. He has performed 2 of these > with no complications and I will be the 3rd. I know that is a lot of trust to > put into someone, but I have too, as it is I am traveling 2 hours to get to > him and he is the closest. I have joined a support list of his and everyone > is pleased with him He has had a few patients have a complication on the Lap > RNY but other that none. I have checked throughly. I reckon at some time > you have to Just go for it. JJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 > I'd be interested in knowing how he advertises this information.. > > > Sorry, I didnt answer this one... I don't know that he advertises at all, I > went in asking for that surgery and asked if he performed it and he said yes. JJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Dear Maureen: You have come to the right place. You will find much more information here than anywhere else. I think if I were you, I would try to talk to the Social Worker from Hospice and see that she gets whatever information you think will be helpful. I know that when Ken was on Hospice, they knew very little about his condition when they started, but each person who came took my handouts and asked a lot of questions. They were all very interested in learning as much as possible about it. Even from a distance you can keep the people caring for your sister informed, and that is of more importance sometimes than your physical presence, especially if Hospice is involved because they can see that her physical needs are met. Love, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Maureen where do you live? Where does your sister live? There may be someone close to one of you to meet with you or call you on the phone to get some of your specific questions answered. Judy B. (Ohio) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hello to all, I have just joined your list. My sister is very ill with Shydrager and has asked me to contact you in an effort to find out what she may expect from this point. Although she has had Shydrager for a number of years, she was only diagnosed in March, 2001. By that time she was extremely sick and her doctors could no longer deny that something was seriously wrong. Before that she had been treated with tranquilizers and antidepressants, neither of which were at all helpful, accused of malingering and turned down by disability in the early stages. In other words, she was generally discredited. Since she was finally diagnosed she has found it almost impossible to get information from her doctors, who are mostly uninformed, or anyone else. All that she has I supplied to her - and her doctors - from my research on the internet. She is currently being cared for by my brother (55 and relatively healthy although he is currently down with a bad back), my mother (84 and almost completely disabled by arthritis) and more recently Hospice which I arranged in a visit last August. Unfortunately they all live about 1400 miles away from me so I am unable to do much more than provide moral support and information when I can get it. My sister's name is Pam and she is extremely isolated. She has no computer available to her and likely would not be able to use it if she had one. I will be her conduit to those of you who feel that you can help her in any way. She feels that she is close to death but has no objective criteria to go by. She is miserably uncomfortable and in pain a great deal of the time. She lives from medication to medication, but has very few hours of the day when she feels even remotely normal. She is particularly desirous of information which would help her to identify the last stages of this illness and of any remedies which others have found to make the last months of life less painful and distressing. She also would like to know what is likely to be the determinant of when and of what she will likely die other than the primary illness. How can she best prepare herself for what lies ahead? Currently she is completely bedridden (Hospice has kindly supplied a hospital bed which has made her more comfortable). She is not being bathed often and finds that very burdensome. It has now been weeks. Should I call Hospice and ask that someone assist her with this? My mother currently cannot due to her own physical condition. I am at such a distance from her and feel relatively helpless. All I can do is ask for information from those who also live with this condition and might be able to help me find solutions to add to her comfort both physically and psychologically. I thank you for any which you can provide so that I can help her. We are in contact frequently and I will transmit any messages directly to her. Thanks to all for listening! Best regards, Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Maureen, Hello and welcome to the list. I'm sorry to hear that your sister is having such a difficult time. I will try to answer some of our questions, and others will fill in, I'm sure -- we're a pretty helpful bunch. First, how old is Pam and where does she live? We have several support groups in various areas that might be able to help her more directly. You mentioned that she is in a lot of pain. Do you know the cause of her pain? Is is muscle spasms, headaches, rigidity, neuropathic pain in her limbs? While none of us on the list are doctors, we have quite a bit of practical experience and might be able to suggest medications for her to discuss with her doctors. What are her primary symptoms? What medication is she taking curently? If we know those things, we might be able to make suggestions. Shy-Drager/Multiple System Atrophy (MSA) progresses at different rates in different patients. It is very difficult to say how and when Pam might finally die. Death most often comes from pnemounia (frequently caused by aspiration), urinary tract infection (which when untreated becomes a blood infection) or heart failure. Sleep apnea is sometimes a cause of death in patients who otherwise seem to be in the fairly early stages. As far as services provided by hospice, several others on the list can comment better than I, since they are or have recently used hospice services. I would say, however, that hospice should certainly be providing someone to help with bathing, at least several times a week. I'm sure Pam is quite uncomfortable. I hope that answers some of your questions. If you have not already done so, please explore the links on the yahoo groups shydrager page, there is a great deal of information there. Also, feel free to ask ANYTHING here -- we're pretty shock proof and will always try to help. Carol & Rob(age 55, dx SDS/MSA 3/98) > > Hello to all, > > I have just joined your list. My sister is very ill with Shydrager and > has asked me to contact you in an effort to find out what she may expect > from this point. Although she has had Shydrager for a number of years, she > was only diagnosed in March, 2001. By that time she was extremely sick and > her doctors could no longer deny that something was seriously wrong. Before > that she had been treated with tranquilizers and antidepressants, neither > of which were at all helpful, accused of malingering and turned down by > disability in the early stages. In other words, she was generally > discredited. Since she was finally diagnosed she has found it almost > impossible to get information from her doctors, who are mostly uninformed, > or anyone else. All that she has I supplied to her - and her doctors - from > my research on the internet. > > She is currently being cared for by my brother (55 and relatively > healthy although he is currently down with a bad back), my mother (84 and > almost completely disabled by arthritis) and more recently Hospice which I > arranged in a visit last August. Unfortunately they all live about 1400 > miles away from me so I am unable to do much more than provide moral > support and information when I can get it. > > My sister's name is Pam and she is extremely isolated. She has no > computer available to her and likely would not be able to use it if she had > one. I will be her conduit to those of you who feel that you can help her > in any way. She feels that she is close to death but has no objective > criteria to go by. She is miserably uncomfortable and in pain a great deal > of the time. She lives from medication to medication, but has very few > hours of the day when she feels even remotely normal. She is particularly > desirous of information which would help her to identify the last stages of > this illness and of any remedies which others have found to make the last > months of life less painful and distressing. She also would like to know > what is likely to be the determinant of when and of what she will likely > die other than the primary illness. How can she best prepare herself for > what lies ahead? Currently she is completely bedridden (Hospice has kindly > supplied a hospital bed which has made her more comfortable). She is not > being bathed often and finds that very burdensome. It has now been weeks. > Should I call Hospice and ask that someone assist her with this? My mother > currently cannot due to her own physical condition. > > I am at such a distance from her and feel relatively helpless. All I can > do is ask for information from those who also live with this condition and > might be able to help me find solutions to add to her comfort both > physically and psychologically. I thank you for any which you can provide > so that I can help her. We are in contact frequently and I will transmit > any messages directly to her. Thanks to all for listening! > > Best regards, > Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Marueen, I forgot to add that we live in Lexington, MA. I gather from later posts that Pam lives in Massachusetts also. We have an active support group here and might be able to suggest resources -- where in Massachusetts does she live? Carol & Rob > > > > Hello to all, > > > > I have just joined your list. My sister is very ill with > Shydrager and > > has asked me to contact you in an effort to find out what she may > expect > > from this point. Although she has had Shydrager for a number of > years, she > > was only diagnosed in March, 2001. By that time she was extremely > sick and > > her doctors could no longer deny that something was seriously > wrong. Before > > that she had been treated with tranquilizers and antidepressants, > neither > > of which were at all helpful, accused of malingering and turned > down by > > disability in the early stages. In other words, she was generally > > discredited. Since she was finally diagnosed she has found it almost > > impossible to get information from her doctors, who are mostly > uninformed, > > or anyone else. All that she has I supplied to her - and her > doctors - from > > my research on the internet. > > > > She is currently being cared for by my brother (55 and relatively > > healthy although he is currently down with a bad back), my mother > (84 and > > almost completely disabled by arthritis) and more recently Hospice > which I > > arranged in a visit last August. Unfortunately they all live about > 1400 > > miles away from me so I am unable to do much more than provide moral > > support and information when I can get it. > > > > My sister's name is Pam and she is extremely isolated. She has no > > computer available to her and likely would not be able to use it if > she had > > one. I will be her conduit to those of you who feel that you can > help her > > in any way. She feels that she is close to death but has no > objective > > criteria to go by. She is miserably uncomfortable and in pain a > great deal > > of the time. She lives from medication to medication, but has very > few > > hours of the day when she feels even remotely normal. She is > particularly > > desirous of information which would help her to identify the last > stages of > > this illness and of any remedies which others have found to make > the last > > months of life less painful and distressing. She also would like to > know > > what is likely to be the determinant of when and of what she will > likely > > die other than the primary illness. How can she best prepare > herself for > > what lies ahead? Currently she is completely bedridden (Hospice has > kindly > > supplied a hospital bed which has made her more comfortable). She > is not > > being bathed often and finds that very burdensome. It has now been > weeks. > > Should I call Hospice and ask that someone assist her with this? My > mother > > currently cannot due to her own physical condition. > > > > I am at such a distance from her and feel relatively helpless. > All I can > > do is ask for information from those who also live with this > condition and > > might be able to help me find solutions to add to her comfort both > > physically and psychologically. I thank you for any which you can > provide > > so that I can help her. We are in contact frequently and I will > transmit > > any messages directly to her. Thanks to all for listening! > > > > Best regards, > > Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Dear Barbara, Thanks for your response. Pam has only been on SSI for about 4 months so is ineligible for medicare. It is very unlikely that she will live long enough for her to become eligible. So for now Hospice is the primary provider. Perhaps I will call them on Monday to ask someone to go and bathe her as my mother cannot at present. Pam immediately passes out (or something even more frightening really - kind of like a seizure) when she is given a bath so it takes someone strong to hole her up long enough to be bathed. It is very unpleasant to go more than a month without a bath! Maybe Hospice is unaware of this as Pam does not open up to anyone and tell them what she needs so I have to be her advocate. Thanks, Maureen~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hi Judy, I am in Southwest Florida and Pam is in town, Mass. As far as I know there is no support group in her area, not that she would be able to go anyway given her condition. She is so alone. That is one of the things that most bothers me. She lies in one room alone all of the time with only a TV for company. I just went out and bought a cell phone with free long distance service every night so that I can call her at least daily. Does anyone in the group live near either of us? Thanks, M~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Dear Carol and Rob, In answer to your question, Pam is 52 and lives in town, Mass. I will take a stab at the medications, but can clarify more after I talk to her tonight. I believe she is on Synthroid as she also has Graves' Disease. I believe she takes Sinemet. There may be another med also, but I can't recall what it is. Her pain mainly is in one leg above the knee which is likely due to spasm and/or rigidity. This is so painful that she spends a large part of every day just struggling with the pain. She can only stand briefly and with assistance and then is bent over double as her back muscles long longer function properly. She also blacks out and has been injured hitting her head on the floor, tub, toilet and other objects as she has fallen. So she was a mass of bruises last time I saw her. Her doctor was very resistant to giving her any pain medication because of her low blood pressure and what he said would be interference with her primary medication. He finally gave her a patch of some kind, but has told her he only wants her to use it for emergencies and she has thus never dared to try it because of his admonitions. So she remains in pain. To date Hospice has never bathed her. That is what I must arrange. But it may be that my mother or brother refused such services. They were totally against my arranging Hospice to begin with and have been anything but cooperative to say the least. Pam is in a very negative situation all around and is very depressed. She really has no emotional support at all apart from me. Any suggestions are appreciated. I am conversant with the illness and more than willing to learn as well. Thanks to all, Maureen~ Quote Link to comment Share on other sites More sharing options...
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