Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 At 09:57 PM 7/26/00 -0400, amama6x@... wisely said: >There has to be something somewhere >that will help...and I think I have exhausted all my resourses Hi, welcome! No you haven't exhausted all your resources. But it is best if the source of the pain can be reasonably identified. I suppose there is some chance that the source of the pain healed, but left an " impression " of pain you still feel. However, I would suggest starting with a well recommended chiropractor first though. Chiros' take standing xrays, among other things; and generally do neurological exams. Regular medicine is just discovering standing xrays. If you haven't consulted a chiro, it would be wise to. If you have, what happened then? Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2000 Report Share Posted July 27, 2000 At 09:57 PM 7/26/00 -0400, amama6x@... wisely said: >There has to be something somewhere >that will help...and I think I have exhausted all my resourses Hi, welcome! No you haven't exhausted all your resources. But it is best if the source of the pain can be reasonably identified. I suppose there is some chance that the source of the pain healed, but left an " impression " of pain you still feel. However, I would suggest starting with a well recommended chiropractor first though. Chiros' take standing xrays, among other things; and generally do neurological exams. Regular medicine is just discovering standing xrays. If you haven't consulted a chiro, it would be wise to. If you have, what happened then? Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2000 Report Share Posted July 28, 2000 In a message dated 7/27/00 8:38:00 PM Central Daylight Time, kturbin@... writes: << No you haven't exhausted all your resources. But it is best if the source of the pain can be reasonably identified. I suppose there is some chance that the source of the pain healed, but left an " impression " of pain you still feel. However, I would suggest starting with a well recommended chiropractor first though >> I went to a chiropractor almost a year ago, and after several weeks of going, I didn't feel any better. If anything I felt worse and ended up taking more meds after each visit. :-( Oh well, something will work one of these days...at least I hope it will! Hugs and Prayers hJeng If you think my hands are full... You should see my heart! Doula SAHM to: Greg, Jr. 1990 Jordan 1991 1992 1993 Meghan 1995 & Corey 1998 Wife to Greg~1988 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2001 Report Share Posted July 1, 2001 Bob, Greetings and welcome to the list. About 15 years ago, a friend of mine developed a similar condition after a car accident. After suffering for a year, and no longer wishing to be on prescribed tranquilizers, he took up meditation. He learned to meditate while listening to soothing music. As part of his self therapy, he then would listen to the same music and meditate while pedaling slowly on an exercise bike. Eventually he learned to increase his speed and intensity without triggering the anxiety attack. Last we spoke (unfortunately a number of years ago, he moved and we lost touch), he was, for the most part, syndrome free. Hope this helps. Welcome back to the big sweat! Les ----Original Message Follows---- Subject: Newbie Date: Sun, 1 Jul 2001 19:54:33 -0700 Hello All Sure glad I found this list as I just started BFL last week. I really like the positive energy here. A bit of information about me and my goals: I'm a 58 year old man who ten years ago was weight training regularly and running marathons in the Clydesdale division. Since then I have had two serious illness which made it next to impossible to train. My biggest barrier is that several years ago I started getting panic and anxiety attacks while I was working out. It seems the increase in adrenaline causes them. I seem to have a handle on that now but my brain is programmed to hit the panic button whenever my heart rate or intensity increases. Consequently I have to teach my brain to accept the intensity of a workout so my first challenge is to show up every day and think of BFL as rehabilitation rather than competition. I'd like to hear from anyone who has had a similar experience. Statistically I'm 6'2 " , 34% BF at 270 # or I was 270 ... today I'm 264.5 after a week which I attribute mainly the change in diets. I'd be very happy to reach 20% BF and about 220# by the end of the year. It does feel good to start to sweat again. Bob _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 In a message dated 5/6/02 12:23:08 PM Central Daylight Time, agtopman_uk@... writes: > I have a full-time job. What level of care will he require immediately and > long-term? > Hello and welcome, Alan. I am sorry about your partner, his sadness, yours, and all that you two have ahead of you. You have asked perhaps the most difficult question - level of care now and future. It varies so much depending on the patient, their rate of decline, other medical issues. My husband's decline was so slow for such a long time that I grew complacent about the future. Then a few months ago he went into a tailspin, with something new almost every day, and none of it good. He's not rebounding, either, as he has in the past. Since Great Britain, along with Japan, led in defining this disease I am hopeful that you may also be leading in the kinds of services to be made available to both patient and caregiver. Have you spoken to the neurologist of his expectations? And to a social worker about what kind of help you can get? Those would be places I would start. Best to you, and please come here as often as you need. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 In a message dated 5/6/02 3:45:01 PM Central Daylight Time, agtopman_uk@... writes: > I think I could easily be complacent as is fairly " together " most of > the time. But over the past 7 months of the first presentation of problems > there has been a marked decline - he was going to the gym 3 times a week, > now he can barely walk. This does sound like rapid decline. I am so sorry. My husband did quite well for a long time on Aricept and Sinemets, but I am anticipating changes at our next appointment. He, too, was in an exercise program, but now can frequently barely walk and sometimes uses a wheelchair, which he hates. This within only two months, plus garbled speech, Capgras syndrome, occasional swallowing and toileting trouble, dreadful REM sleep problems, constant hallucinations, and confusion at finding his way about the house. This is all very upsetting, but the things I have learned here and from my reading makes it much easier to tolerate than if I'd been unprepared. Glad to hear that you have an OT to assess Lindsey's abilities. We had an OT consultation during our last visit to the neurologist and now have a Physical Therapist to do an at-home exercise program. Best wishes to you both - Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Alan--welcome to the club no one would choose to join.If you read the archives, you'll find a lot of information and meet a lot of wonderful people through their letters. There is no way to predict what will happen with your LO (or any LO specifically). LBD changes from day to day if not from hour to hour. My mother can be looking like she's at death's doorstep one day to perky and sassy the next day. Mother had mild Parkinsons for several years and perhaps some confusion for a year or so. Then she was hospitalized with intestinal bleeding and was put on heavy dose of antibiotics and that led to a psychotic break. She saw red dogs and dangerous people etc. Within weeks of her leaving the hospital, she was brought to my house in the middle of the night by the local police. Six months later she was moved to a nursing home. A few months after that she had fallen a couple times and could no longer walk without support on both sides. She seems to go downhill very rapidly. She has trouble talking now and says inappropriate responses to other people's conversation with her. Other people's LO's are progressing much more slowly. You can't predict. At lunch today I bought mother a pair of very good leather sandels -- since she can't walk more than a couple steps, I don't think she'll wear them out but I do think that she'll be around long enough to justify my extravagent purchase. One problem for the caregiver is that even if someone is in the nursing home, you have to consider their needs in your every decision. The others can help you more with medical information. I don't have any knowledge of medicine at all. Feel free to write me if you need to vent. That I understand. > Hi All > > Just found this group via the Lewy Body Disease website. > > My partner is 65 and has just been diagnosed with Diffuse Lewy > Body Disease. About 7 months ago he started getting agitated > and having anxiety/panic problems. His GP put him on > epam which just made him a zombie, then put him on > Cipramil which gave him bad tremors. He was then referred to a > psychiatrist who stopped the Cipramil and put him on > Trazodone, but after a couple of visits, he was referred back to > his GP - the psychiatrist suspected Parkinson's Disease. He > started on Sinemet Plus, later changed to Sinemet CR and > finally got in to see a consultant neurologist. And this is where > we are now, with a diagnosis of Lewy Body Disease. > > He has been in hospital for the past 2 weeks (went in with > bladder retention and constipation and is now on the neurology > ward). The consultant has reduced his Sinemet and changed > the Trazodone to Fluoxetine. > > At the moment his main problems are postural hypotension (his > blood pressure drops through the floor when he stands) and leg > pains and cramps which he has had from the beginning. > > So, that's my story. Taking it one day at a time at the moment. > Although they could make a reasonably assured diagnosis, I > have no answers from the neurologist for prognosis or > degeneration. What am I really in for in looking after him. He's > 65, I'm 38 - I have a full-time job. What level of care will he > require immediately and long-term? > > I will read the archived messages as I get a chance. At the > moment I am spending a lot of time with him in hospital. He is > almost always tearful (something he says he has no control > over) and his leg pains still upset him. But at least he has > managed to sleep the past 3 or 4 nights - the first time in > months. > > Thanks for being there. It's reassuring to know other people are > coping with the same problems. > > Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Dear Cheryl I'm so sorry to hear of your husband's rapid decline. I'm afraid that the neurologist in my partner's case has been unable to give any indication of progress and, like you, I think I could easily be complacent as is fairly " together " most of the time. But over the past 7 months of the first presentation of problems there has been a marked decline - he was going to the gym 3 times a week, now he can barely walk. I wasn't aware that BG were among the first to recognise this disease. I will talk with the consultant again tomorrow and with the Occupational Therapist that will assess him for life at home. They should then involve our Social Services as it is clear that he needs regular attendance. Thanks again for replying. Wishing you well. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Alan Sounds like you have your hands full. This almost seems like my life, with a few gender changes. I am 38, and the daughter of an almost 65 yr old LBD patient. My dad has been in a nursing home for almost 3 yrs. Much of what you have explained has and is still happening to my dad. He has a lot of pain, mostly in his legs, arms, and hands. Many times he complains it is all over. His blood pressure can get very low, to where he even takes on a bluish tint in his extremeties. He is easily agitated, yet that can change drastically in a minute. One thing you will notice is this disease changes and fluctuates often. It is hard to give a definate path you will travel as this disease differs from person to person, hour to hour. I am happy to read you will be going through the archives. There is so much helpful information and stories to bring you up to date. Also, many websites have been posted that can give more information on what to expect and medications that can help treat the symptoms. Welcome to this group!!! My heart goes out to you, and like the others, I will add you to my prayer list. I have found that when all else fails, and my tears have dried up, prayer has been there through all I have had to face. Take Care of yourself! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Sandie, thank you. You have tears welling up in my eyes again. But not from sadness for our predicament and that of our loved ones, but for the camaraderie and support that you and others have shown. Thank you again. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Alan You are very welcome. I do hope through this you take time every day to take care of yourself. This can be a very draining disease and we cannot give the best care if the caregiver isn't healthy and strong. Best wishes to you and your partner. God Bless you both! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Cheryl My heart goes out to you!!! Just setting here wishing I could help to take away some of the pain your heart is going through. I am so sorry your husband is rapidly declining. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Hi Welcome to the group. I am Tracey and we have two daughters, Coral, almost 14 (nt), and Skylar age 11 diagnosed autistic at age 3. There are a few families on here with more than one child on the spectrum. This is a great group. Its nice to have you with us. Look forward to hearing more from you. Tracey Newbie Hi new here.I have 3 autistic spectrum kids.My only daughter was diagnosed 3 weeks ago .She is higher functioning than the boys but is a huge challenge.We have been searching for a diagnosis for 3 years .Because my boys were diagnosed first she was considered to be copying them.I have been told families do not have more than 1 autistic child.Well we really hit the jackpot and beat the odds.(lol) Thanks for letting me join the group.We have been advised to put on dexedrine or adderal.(ritalin type stimulants) Does anyone have experience with this ? Lea Wife to Rick mommy to (autism)6yrs (autism)4yrs (autism)3yrs (only asthma so far)2 yrs --------------------------------- Post your free ad now! Yahoo! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 My daughter is very sensory defensive and has a lot of fears in general .She has a great vocabulary but rarely comprehends what she says or what is said to her.She is scared to try and generally requires a great amount of emotional support,praise redirection to complete the smallest tasks.(ie socks on).We have no other cases of autism in our family.We are in Canada.My little guy is showing some symptoms so we will see.Where I live 80% of families with a special needs child divorce.We have great government funded respite and go out regularly.Sometimes we feel to tired to go out but do anyway.There is never a dull moment so it keeps us young.Lea Wife to Rick mommy to (autism)6yrs (autism)4yrs (autism)3yrs (only asthma so far)2 yrs --------------------------------- Post your free ad now! Yahoo! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 Welcome to the list. I to be Sondra adult with HFA in Ohio and know of several in you country , one being adult female named Minna who sometimes travels to speak. She is adult on spectrum too/ Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi Lea, Welcome. I have 3 children. Daughter #1 is 10yrs and ADHD/CAPD, although I think she is on the spectrum. Daughter #2 is 8yrs has autism and is non-verbal and a son, 4yrs, also autistic. There is never a dull moment around here either. It seems to be always so loud! But my kids and I sure have a lot of fun trying to out-smart each other. Guess we have to split the jackpot! Visit my website when you get a chance. Ginnene ginnene@... http://www.specialneedschildrennetwork.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Vicky! Welcome! I'm PennY in Michigan. My daughter with autism just turned 5. We've been intervening for 3 years. She is also a thill seeker and a climber, and has no fear. I have two more children, Alyssa's twin brother, and older (by 23months) sister. Welcome to the group. Pen > > > I am new to this group and this is my first time posting. > Thanks, Vicky. P.S.: Sondra, I recognize your name from the Ohio group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 wotana. wjat areas of Ohio do you to live? are you aware to task force efforts? Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Want to say going through a med withdrw and to be on new studd soon so the change of me is ot be of maybe a major didffernt and mayb enot but will see. The one was on edid make of me function most best but is being pulled form market now and so now am witdr5w from it and it is makeing some scatters things in me. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 HI pennY LOL I to had to go back to see which pennY you ot be LOL who is you childrens doing? for me having nioce day but tired much so . Shoudl be at task force meeting but toodk day to self as had too much apointmens Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I to just rereaded my mail Sorry for the poor posting and need to remember to do spell check things LOL I to need to learn to spell. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Alyssa's twin is in Kentucky with my mom and dad, so I have just my two girls right now. I need to " talk " to you about vision therapy. Alyssa's trying to help me type, so now is NOT the time, but soon,. > HI pennY LOL I to had to go back to see which pennY you ot be LOL who is you > childrens doing? for me having nioce day but tired much so . Shoudl be at > task force meeting but toodk day to self as had too much apointmens > Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Hi Vicky, I am also in OH. We live in Columbus, actually Hilliard. Where are you located? Hilliard's preschool program was great for . Her 2 main teacher specialized in autism and bloomed with them. We start kindergarten this year! Scary! ) is 5 and diagnosed when she was 3. We tried to get help from the state also but didn't get any. Nice to meet you!! ) Penny in OH 's Mom --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.707 / Virus Database: 463 - Release Date: 6/15/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Janet this list has way over 600 members who have daughters and or female on spectrum. I to be Sondra adult with HFA in Ohio. I to be mom to 4 children's all dx with Asperger's syndrome, 2 are of girls, 2 are of boys. Sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Hi Vicky Welcome to the list. This is a great group. Its a good place to vent, get ideas and support. Its nice to have you with us. Tracey Mom to Coral (age almost 14 NT) and Skylar (age 11 autistic) newbie I am new to this group and this is my first time posting. I have a 4 year old daughter diagnosed approx. 6 months ago with severe to moderate autism. Prior to that her diagnosis was speech delay and sensory integration disorder. My daughter is a beautiful and loving child, truly a blessing, but we must always be on alert with her as she is a thrill seeker (sensory and climbing issues) and does not recognize danger. She is capable of saying approx. 75-100 words, but only uses a small handful of words with any frequency. Sometimes we may hear her say a new word, and then it might be an entire year before she will say it again (regardless of how hard we work to get her to speak it again). We also have the sensory issue where she mouths everything and will eat most anything, i.e., sand from the sandbox, will go through the trash looking for egg shells, coffee grounds, etc., lotion, crayons, detergent, Christmas ornaments -- you name it. The number for Poison Control is on speed-dial at every telephone in our house. We live in Ohio, which offers very little services for children with autism. She does attend speech and occupational therapies, and we hope to set up a home ABA program this summer. She did attend a special needs preschool this past year through our school district, but they will only give her very limited individual services, none of which includes effective autism therapy methods. With this list I am looking for support from other parents who have " been there - done that " . Additionally, my daughter is surrounded by boys in all her therapies and so I'm really interested in hearing from parents who face these challenges with daughters and granddaughters. Thanks, Vicky. P.S.: Sondra, I recognize your name from the Ohio group! Autism_in_Girls-subscribe ------------------------ Autism_in_Girls-unsubscribe Quote Link to comment Share on other sites More sharing options...
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