Guest guest Posted April 1, 2001 Report Share Posted April 1, 2001 , I had to smile when I read about your " Mommy Hotel Night " ....a have been doing this twice a year for about 9 years now. In late summer I go to a hotel near an outlet mall with a girlfriend. We do all that you mentioned (my friend reads the trashy magazines while I read the health, natural healing magazines). We eat nothing but junk food and buy a 4 pack of wine coolers and usually order a comedy or fun movie that the hotel is offering. We shop till we drop then head to the hotel. We go home and feel totally renewed. In late winter I go to my cousins house (a widower, husband died to Huntington's disease and son is away at college) and we go to an art theatre and to a nice place for dinner...come back, have a glass of wine, stay up late and chat and then I head off to my room to read numerous magazines in peace and quiet. It is a wonderful night of R and R and about the only two times a year that I drink due to my GERD. Many times I have had to cancel due to the boys being ill etc., but I always try to reschedule for sometime later. You sound a lot like me....HoHo's would be my choice too!!!! I can't tell you how many times Mark's immunologist has told my husband and I that it is so important to take time for ourselves. He is so correct, it may not always be easy but it can be done, if only for a few hours. Thanks for sharing that letter....I thought it was simply wonderful advice. Autumn (Mom to Mark Cd5-Cd19 PID and ) Re: Re: Update on ERin...................... > : > > I so wish you could get some answers on . I wish I could figure it out > for you! But I guess all I can say is we're all thinking of you and praying > for your family. Hang in there, you're doing a great job. > > Is there any way for you to get out and away for a couple of hours? You > really need a break to get away from the stress. Well, maybe after this > current issue (scary reaction/rash) is more stabilized. I'd recommend a > " Mommy Hotel Night " -- you take some trashy magazines, decadent treats (Fanny > Mae Pixies or Ho Ho's for me), manicure set and bubble bath, sit in the > peace and quiet. NO PHONE CALLS except for real emergencies. Go out and bring > back some yummy dinner to go, wear earplugs and sleep the whole night > through. It's wonderful. > > (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not > on IGIV yet) > > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 sounds just like Kody! He won't drink milk or any milk products. But he will eat cheese and yogurt. I asked about that once and was told that he can tolerate those because there are different enzymes in them. I was really shocked at his weight goal too. But, according to the charts, that is where he should be. Now, this is for a boy, it may be different for a girl. His weight was noticed before, but, he was shorter then, and right when the doctors were getting concerned he had started to gain (he went from 37 pounds to 42 pounds in about 6 months) so they thought he was starting to " catch up " . Right now, he is still 39.5 pounds, and holding. At this point, I think the worry is that since he hasn't been well, he could lose more if he were to get sick again. And that would be bad. Being skinny isn't too much of an issue for healthy kids that eat balanced meals. But for a kid like ours, who does eat fairly balanced meals, but are also sick a lot, it compounds the problem. We were told to really, really push protein products on him. So we offer high protein meals to him, and I add a protein powder to his juice (he didn't like it at first but is getting used to it). I use a Shaklee protein powder (relatives sell it) but I see similar in health food stores all the time. Also we started with only an 1/8 of a teaspoon and are slowly building up to 1 teaspoon. I think that helps the taste issue too. And I baked him peanutbutter cookies and I put the powder in that too! Tasted not bad...worth it for him! I would keep mentioning 's weight to her doctors. Namely because if she were to get quite sick, it could be a problem then, and why deal with things like that in moments of crisis if you can begin doing something about it now? I wish I had pushed it before. Diane, Mom to Kody, still AKA Batman! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 In a message dated 9/1/01 6:49:35 AM Pacific Daylight Time, llkraft@... writes: > Here are some > ideas that is helpful to include: > > extra time for work > help on test if needed > rest during school hours if needed > to be notified if sickness is in class: chicken pox, fifths disease, etc. > to share information with PE and Music teachers > Emergency contact > Note from your doctor( This always helps. Since immune deficiencies are not > understood this will help the school to know you are not an over protective > parent. > > > started 6th grade this year. We asked what his concerns where and what he felt he needed. Along with what you have already shared 's biggest concern was to be able to step outside to blow his nose without asking . He does not like to do it in class due to the fact there is so much! Bathroom without asking and to be able to bring water. has been doing fairly well during this trail period off IVIG. Although he is more fatigued and we are trying to allow for more down time for him. He is constantly struggling with his sinuses, always full and swollen but no infection! He is also experiencing more headaches. We had the Celexia question sometime back and at this time his counselor does not want to put him on. She feels he needs to be given ample time to rest, and that a lot of what we are seeing is the trailing off the meds........to wait and let his body adjust then in a month if no changes then try it. We meet with 's ped on the 7th and we will see what he thinks. He is the one that suggested it but encouraged us to ask his counselor first. His neuro wants him to do biofeedback at the pain clinic at Stanford for his headaches. We start on the 13th. Once a week for 8 weeks! Remember we live 4 1/2 hours from Stanford. We looked into our local area and they do not provide the same technique. has done bio at Stanford before for his Syringomyelia and had great results so we are not complaining. Actually Im thankful to try something besides meds! We checked into Angel Flight and they will be flying us each time. We have used them before. I'd encourage anyone who has to travel for treatments for their child to look into it. ( I believe the distance has to be at least 150 miles but Im not sure) They are a wonderful organization and it is NOT based on your income!!! Well, its late. My hubby took the boys camping no one home but me and this computer.........time to turn the lights out! Good night le 11, Selective Antibody Def., IVIG for 4 years, every 3 weeks. Syringomyelia 6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids removed, septic hip since IVIG 0 surgery needed! Trailing off IVIG 6/28/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 WOW , what news.......that's a lot to handle friend. I am glad that you updated us on your GI report, and I hope that if you do have to have surgery that it is not too intense. You are in my thoughts .....stay positive, you have a lot of people here thinking about you, and congratulations on the new additions to your home!!! How exciting! Be well.. Love, Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2002 Report Share Posted July 12, 2002 i Chriss, yes you are working fine. Maureen Hi all. I am the moderator of the NYCCAT e-group and had a glitch in my membership. Just checking to see if my account is working again. THANKS. Take care, Chriss www.artsintherapy.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Tina........I am so glad to hear you have some good news......that is wonderful........it will be worth the trouble I know.........good luck......:)sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 > Well at last we had the call. starts his IV's tomorow and the > community Nurse at St 's here on the Island has come up trumps, bless her > cotton socks! She used to work in Southampton and backed me up about them > allowing parents to do IV's, she has got al the paper work from them and > instigated a protocol for parentally administered IV's. We will be the guniea > pig family so pray for us to get it right! Yay! I did try sending this yesterday but the board went down for the evening. Anyway, good luck with the training. You can do it, you really can. After a while you will feel an old hand at handling syringes, needles etc even if you've never touched them before in your life. But it will make life so much easier having at home. Give him another hug - and one for you too! Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Lynne We mix colomycin for the Nebuliser already so the needles and syringes are no new thing to us. We also have to use suction, and have passed ng tubes etc on both and Rosie. I have no fear of the training and is such a trooper that he gives us no hassles anyway. I was only concerned about them putting the Venflon in as he usually hates that bit and can scream fo England. However, I need not have worried, he was so desperate for them to make him better he sat there and let them do it with no grumbles whatsoever. His only complaint was that the nurse did not take the bandage down before she put the first dose in. He was quite cross with her cause in Southampton they always took his bandage off and then redressed it:-) However Helen and are old friends and he forgave her with a hug when she told him she would take it off next time! We also met the new Ward Sister who is really nice. I told her that I thought we would be OK to go solo after tomorrow, (I really don't want to have to be up there for 6 am on Sunday) but she said as Manager of the unit she would feel happier if we were given training and supervision over the weekend and maybe Monday am then there was back up in the community after that. Oh well I did try. I hope they let me have a go tonight so that I can show them I am capable and she may relent! It is not easy trailing three other kids back and forth late at night and then again early morning! Plus how many episodes of Coronation street can a girl miss? Love to allTina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome. Rosie 10 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating. And who is 4 years old and a big school girl now! http://uk.photos.yahoo.com/tdlhillier http://uk.briefcase.yahoo.com/tdlhillier mailto:tdlhillier@... www.cdlsrosie.homestead.comGet a bigger mailbox -- choose a size that fits your needs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Cheryl........Welcome to the group...........I live in Nashville Tennessee I am a 36 year old woman and have just been diagnosed with bronchictasis this past June......I have been in the hospital twice so far and am doing my best to stay out of them.....*smile* I take 4 breathing treatments a day and antibiotics every other week of every month.......it has been a big adjustment..........I can't work at all and just got approved for disability this month........they sent me to two of thier drs and my breathing registered at only 31% so they figured I wasen't lying about not being able to breathe.......*smile* this in itself is a big adjustment for me cause I have worked since I was 15 years old..........so I'm trying to find hobbies around the house to keep my self busy.........everyone in this group is wonderful and we are always learning new things from each other......so never be afraid to ask someone a question that you might have........I learn more from the group than I do from my drs..........*smile* sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Cheryl.............well the breathing test and my oxygen level are two different things........my oxygen level is at 93% which isnt bad at all so believe it or not I'm not on oxygen at all..........the breathing test that I was referring to is where they make you sit and blow all your air into this machine and it reads your breathing level.......or something like that.........anyway normal is considered 80% and mine is only at 31% which my dr says is horrible.........she's not telling me anything I don't know as I'm the one who runs out of air by going out to the mailbox..........*smile* but if I take it slow I do ok...........my immune system is down too......always having to make sure I stay away from anyone sick or having signs of a cold so I don't get it...........I get pnemonia so fast and then wham they slam me in the hospital.......so I really have to watch my enviroment..........my husband is a blessing too.....don't know what I would do without him........although sometimes he tends to be a tattletale.......the dr will say.....how have you been doing and I'll say.....just great.......and hubby will add......well she has had some bad days she just dosen't want you to know about them.........oh well he loves me......I just have to teach him how to lie better..........*smile* did I mention I'll do anything to stay out of the hospital????????? *smile* sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Ok Cheryl.......hope you have a good day and everything works out for you......I don't know if they have actually tested my immune system........all they say is......sondra.....don't get sick.......hehehehe.........maybe thats thier way of saying my immune system sucks.... sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Cheryl, Glad you found this group. I am pretty new to it to but everyone here is very friendly and helpful. I am 68 and was diagnosed this past April. I am working hard to keep myself as healthy as possible. I had an ER visit in August with Bronchitis but so far have managed to stay out of hospital. I do steam treatments followed by postural drainage with a vibrator twice a day and use a flutter valve at the end of treatment. Started a rehab program today which really went well. It includes exercise, nutrition & education. I have learned more on the COPD International library & sites such as the American Lung Asso & National Jewish Medical & Research Center than from Dr. - Drs. just do not have the time today they once did. The therapist from Lincare who brought my flutter valve really helped a lot in the education division - spent 2 hrs with me but they are located only in the USA. This list is a great support group. Welcome aboard!!!!!! <<<hugs>>> Nona star34baby@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Sondra – 31%??? Good grief. Are you on oxygen all the time? I guess you would have to be with that low level. When I’m bad – really bad – mine drops to around 76% -- when I’m good, it’s around 95% so that’s a major bonus. at least, with the low reading, that’s what I know about. I’ve had to get an ambulance to the house seven times in five months, because I’ve almost passed out due to low oxygen levels. In some ways I’m lucky. I’m a writer (as a secondary job) and it looks like I may have to build my business up to become fulltime. I have arranged a second opinion from a highly qualified doctor, because my current doctor doesn’t give a damn that I’ve spent so much time in hospital. Basically because he’s not doing it <g> I’m on long term antibiotics (that is, every day) but so far it hasn’t helped. The future is a little scary. The good thing is that my condition is progressing slowly. I’ve had virtually no change in four years. This year has been my worst ever, and the worst part has been the terrible pressure on my family. My poor husband is always getting calls from the hospital or ambulance service. Cheryl -----Original Message----- From: BLUEEYES1982345@... Sent: Wednesday, 20 November 2002 12:05 PM To: bronchiectasis Subject: Re: Cheryl........Welcome to the group...........I live in Nashville Tennessee I am a 36 year old woman and have just been diagnosed with bronchictasis this past June......I have been in the hospital twice so far and am doing my best to stay out of them.....*smile* I take 4 breathing treatments a day and antibiotics every other week of every month.......it has been a big adjustment..........I can't work at all and just got approved for disability this month........they sent me to two of thier drs and my breathing registered at only 31% so they figured I wasen't lying about not being able to breathe.......*smile* this in itself is a big adjustment for me cause I have worked since I was 15 years old..........so I'm trying to find hobbies around the house to keep my self busy.........everyone in this group is wonderful and we are always learning new things from each other......so never be afraid to ask someone a question that you might have........I learn more from the group than I do from my drs..........*smile* sondra To unsubscribe from this group, send an email to: bronchiectasis-unsubscribe Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 I realise now I was confused. My breathing tests are 81% & 84% recently, which they’re happy about. Have they tested your immune system? As I mention earlier, I’m having transfusions for mine. I was told this often goes hand in hand with bronchiectasis. Unfortunately, I must go. I have outpatient rehabilitation this afternoon, and my daughter will be here any minute. I will be in contact soon, I’m sure. Cheryl -----Original Message----- From: BLUEEYES1982345@... Sent: Wednesday, 20 November 2002 12:24 PM To: bronchiectasis Subject: Re: Cheryl.............well the breathing test and my oxygen level are two different things........my oxygen level is at 93% which isnt bad at all so believe it or not I'm not on oxygen at all..........the breathing test that I was referring to is where they make you sit and blow all your air into this machine and it reads your breathing level.......or something like that.........anyway normal is considered 80% and mine is only at 31% which my dr says is horrible.........she's not telling me anything I don't know as I'm the one who runs out of air by going out to the mailbox..........*smile* but if I take it slow I do ok...........my immune system is down too......always having to make sure I stay away from anyone sick or having signs of a cold so I don't get it...........I get pnemonia so fast and then wham they slam me in the hospital.......so I really have to watch my enviroment..........my husband is a blessing too.....don't know what I would do without him........although sometimes he tends to be a tattletale.......the dr will say.....how have you been doing and I'll say.....just great.......and hubby will add......well she has had some bad days she just dosen't want you to know about them.........oh well he loves me......I just have to teach him how to lie better..........*smile* did I mention I'll do anything to stay out of the hospital????????? *smile* sondra To unsubscribe from this group, send an email to: bronchiectasis-unsubscribe Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 Hi Cheryl, Re: the flutter valve - you breathe and then as you blow the air out thru the valve you feel a vibration in the lungs and this helps to get any mucus up. I know other people who only do the postural drainage when sick or having a problem with mucus. However my dr. said she wanted it done on a daily basis, twice a day to keep the airways clear. You can find a picture of the flutter valve on the Internet by doing a search on: flutter valve. I use google most of the time to search. <<hugs>> Nona star34baby@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2002 Report Share Posted November 20, 2002 Thanks for the info Nona. It sounds very useful. Getting up the gunk is one of my big problems – when I’m sick. The physio at the hospital nearly kills me trying <g> Funny no one has ever mentioned it to me as an option. Mind you, it seems to be typical of the care I’ve been receiving lately. That’s why I’m seeking a second opinion. Cheers. Cheryl -----Original Message----- From: STAR34BABY@... Sent: Thursday, 21 November 2002 6:24 AM To: bronchiectasis Subject: Re: Hi Cheryl, Re: the flutter valve - you breathe and then as you blow the air out thru the valve you feel a vibration in the lungs and this helps to get any mucus up. I know other people who only do the postural drainage when sick or having a problem with mucus. However my dr. said she wanted it done on a daily basis, twice a day to keep the airways clear. You can find a picture of the flutter valve on the Internet by doing a search on: flutter valve. I use google most of the time to search. <<hugs>> Nona star34baby@... To unsubscribe from this group, send an email to: bronchiectasis-unsubscribe Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi Cheryl - congratulations - I've been to your website and love it. Most inspiring. I love to write myself and find it very therapeutic - I seem most inspired when I'm not well. Nothing worth publishing but I do enjoy it just for me. I'll keep your site on my favourites.... Madeleine Hi everyone. This morning I received notification that my website has beenchosen for the "Golden Web Award 2003-04". Gosh, I can't believe thesuccesses I've had in these last 3 weeks or so. (someone pinch me now!)You know, it hit me last night, now that I'm writing a column about placesof interest in Australia, I get to claim on my tax for places I want to goand see. I really like this job! <g>Oh, and my first column for Bad Girls Press will be up on May 1st. I willsend the link when it's up.Cherylwww.cheryl-wright.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 Honestly, what ever I want. Although, I have gotten much better lately about not eating chocolate and cutting back on the sugar. And I'm still not doing any formal exercising but I do walk a lot at school. Of course, the bathroom issues are there but mostly at night and directly related to what I eat. Other than that, I'm good. I'm getting braces on Tuesday. Can you believe it? You look great, I saw your new pic! Hang in there sister! C > In a message dated 4/8/2003 10:16:45 PM Central Daylight Time, > lisajcochran@y... writes: > > > Did you see my post to you yesterday? I have lost almost the exact > > same amount as you and I was the day before! I know it feels sooooo > > slow at this point in the game. However, it IS coming off still! > > *hugs* How are you? > > > > C > > 12/5/02 > > -52.5 lbs > > > > > > We are very close in Wt loss...What are you eating?? How do you feel? Kind of > compare things...LOL. > in Bama > > http://hometown.aol.com/mdl1031/myhomepage/profile.html > Surgery- RNY to DS revision on12/6 -377.5 > 12/17 - 346.5 ( minus 31lbs) > 01/15- 338.1 (minus 39.1lbs) > 02/12-330.0 (minus 47.5 lbs) > 04/06- 324.3 (minus 53.2 lbs) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Hmmm, I would have to ask... what would that say about the ratio of AS/NT men? How could this research get out without the NT majority of men saying, "This is balony". Or are we suggesting that the majority of men are AS? Or??! How come many of the books supporting this research are written by men who aren't diagnosed with anything but who are professionals. How come when male public speakers speak on this topic all the men say, "YEAH! that's me, finally someone understands me." If I remember correcting the basis of the group Promise Keepers who did the million man march on WA DC teaches this basic concept.... I'm not saying you are wrong just wow, this brings a huge quantity of questions to my mind!! Jennie Re: Judith Laninga wrote:> I had a situation awhile back that enlightened me regarding my husband > and that he might possibly having aspergers. I am interested to hear > responses as to how NT folks and AS might respond to the following > situation.> > Anyway, I went out shopping with the teenage daughter of a friend of > mine. While I was out with her I noticed she was wearing a ring > identical to one I had. It was a cheap ring I had purchased in New > Zealand a year earlier. When I got home I told my husband that I thought > my friend's daughter had taken my ring.And his response was...??> Sure enough it was missing from > my jewelry box. The ring was eventually returned to me, although the > teenager never came clean as to how she ended up with the ring. I have > never seen a similar ring here in the US, but on a recent trip back to > NZ found them everywhere and even picked up a couple more as mine had > been damaged by the girl.> > Anyway, if a couple of your could respond with what you would think a NT > response might be and what an AS response could look like I think it > would be helpful for me.> > JudithWhat's the question?Are you wondering about your friend's response? Your friend's daughter's response? Your husband's response (you don't say what it was)? Or your response to...??- Bill, 75, AS-- WD "Bill" Loughman - Berkeley, California USAhttp://home.earthlink.net/~wdloughman/wdl.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 said:>>Jennie, I am learning to like to empathize- but I solve problems, and always have. I do like it if people can empathize with me, but it is only after learning about AS that I have taken it seriously- before that, I cared much more that someone coud solve my problem than that he or she could empathize. Now, I appreciate it quite a bit. , AS, Straight.<< , I have yet to ever really figure out what 'empathize' means. I still get it all muddled with sympathize. I'm not sure why it needs to be so technically defined if it's all about non verbals anyway? LOL Anyway, I can feel others pain. I have a friend who's daughter has had a recent kidney transplant. I am sensitive to how she is feeling, how difficult it is for her. I have not experienced this. I had a sister die of cancer so I know what it is like to have cancer, I know what it is like to have a sibling die. I remember that. I don't know is one sympathy and one empathy?? I do think it might be nice to have someone be a bit more understanding of my life and the difficulties I deal with. But frankly, no one has been, other than other folks with AS. My husband for example has lived with me for 10+ years and doesn't have a clue even now how difficult it is for me to keep myself together and be functional every day. With out exception people tend to just tell me to fix the problems I haven't already fixed. No one has ever asked me, "What is it like?" ly I don't think anyone cares. Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007  a quick thought from me... does anyone suspect that doctors are reluctant to DX AS because there is no 'cure' or 'medication'?  Medical doctors are not trained to teach coping skills gained by trying to more fully understand conditions like AS. jkzI'm not saying I'm right either - but I have questions in my head.I thought all men were like the feminists described them but then I started to meet men who are not!! How confusing!! And then I discovered that men were just as much victims of social expectations as women... I'll offer you some more thoughts for thinking about...but most particularly the expectation that men would have had a diagnosis - Aspergers wasn't known in English-speaking countries until after 1993 - and didn't begin to be widely diagnosed in young children until much later (like the past couple of years). Even now diagnosis of children depends on individual paediatricians, many of whom are reluctant to diagnose for reasons that have nothing to do with the truth (I don't mean they lie, but they fudge things because the 'autism' word is thought to be too challenging - diagnosis is too controversial an issue for many). And then again, when did diagnosis of adults come along...??? Only if someone particularly wants a diagnosis and then it can be difficult to find someone who deals with adult diagnosis. Many men will not work in an environment where it matters or where they question themselves - it depends on how severe the symptoms are and the environment in which the adult works (eccentric in the academic field is weird in an office and ostracised in a factory). And then...how many GPs would even recognise what AS 'looks' like??!  Academic research is a great place for people with AS to shine and be accepted.I'm not suggesting that the majority of men are AS - but that the small *influential* group of women writers who influenced a generation (Greer, et al) had experienced significant relationships with AS men and so their perspectives were distorted by a narrow view of men's behaviour. I saw a documentary about Greer some years ago and my memory of the relationship which was central to her life when she was writing is of someone who was completely indifferent to connectedness. Who were the men of influence in the 60s? I don't know. Andy Warhol comes to mind... One researcher claims that AS is the extreme male, basing his conclusions on all that research into the difference between males and females - but if you turn it on its head, then which came first, the chicken or the egg?!  I don't know what the reaction of men in general was to the research about the differences between men and women - men were involved in the research - they wouldn't have had the information about AS to question their own perspective, nor to question how many of those they interviewed were AS. The possible distortion that AS could make simply wasn't taken into account. Research is not an exact science, the perspective of the researcher influences much that comes out of it - even when it is strictly 'controlled' (and most 'popular' research is not). But just to confuse things, my husband doesn't fit the 'typical male' profile - he's too sensitive, too much of a 'new man' in terms of his behaviour... I don't know about male public speakers and the response of 'all' (?) the men in the audience because I've never attended. I've read most of the books over the years - Deborah Tanner springs to mind plus the popularisations in Men are from Mars, Why women can't read maps, etc - partly in connection with my own postgrad academic studies, then personal interest through involvement in the women's movement and, finally, desperation to understand my own relationship!!! Suddenly 'my' world is turned upside down by the existence of AS - and I'm still wondering where it all now fits in. It IS mind-blowing. The world is not as (we) knew it!! :-) So much that (we) accepted, took for granted - even at the macro level, at the political level, all the authority figures in our lives...did they have our interests in mind or...their own...??? :-) No - meet 'AS' (as a concept) and the world will never be the same. :-) On 29/11/2007, Jennie Unknown <mossbtweenmetoestds (DOT) net> wrote:Hmmm, I would have to ask... what would that say about the ratio of AS/NT men? How could this research get out without the NT majority of men saying, "This is balony". Or are we suggesting that the majority of men are AS? Or??! How come many of the books supporting this research are written by men who aren't diagnosed with anything but who are professionals. How come when male public speakers speak on this topic all the men say, "YEAH! that's me, finally someone understands me." If I remember correcting the basis of the group Promise Keepers who did the million man march on WA DC teaches this basic concept.... I'm not saying you are wrong just wow, this brings a huge quantity of questions to my mind!! Jennie Re: Judith Laninga wrote:> I had a situation awhile back that enlightened me regarding my husband > and that he might possibly having aspergers. I am interested to hear > responses as to how NT folks and AS might respond to the following > situation.> > Anyway, I went out shopping with the teenage daughter of a friend of > mine. While I was out with her I noticed she was wearing a ring > identical to one I had. It was a cheap ring I had purchased in New > Zealand a year earlier. When I got home I told my husband that I thought > my friend's daughter had taken my ring.And his response was...??> Sure enough it was missing from > my jewelry box. The ring was eventually returned to me, although the > teenager never came clean as to how she ended up with the ring. I have > never seen a similar ring here in the US, but on a recent trip back to > NZ found them everywhere and even picked up a couple more as mine had > been damaged by the girl.> > Anyway, if a couple of your could respond with what you would think a NT > response might be and what an AS response could look like I think it > would be helpful for me.> > JudithWhat's the question?Are you wondering about your friend's response? Your friend's daughter's response? Your husband's response (you don't say what it was)? Or your response to...??- Bill, 75, AS-- WD "Bill" Loughman - Berkeley, California USAhttp://home.earthlink.net/~wdloughman/wdl.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Janet Zimmerman wrote: > a quick thought from me... does anyone suspect that doctors are > reluctant to DX AS because there is no 'cure' or 'medication'? Medical > doctors are not trained to teach coping skills gained by trying to more > fully understand conditions like AS. jkz The reluctance is shown not just by MDs, but throughout the entire health-care and mental-health professions. Well-enough documented, and there are extant public acknowledgments of such by those involved. Sorry, no refs ready to hand. Google for 'em. The reasons given are as numerous as the people giving them. Often it comes down to money, as in what insurance will or won't pay for. Other times it comes down to what services one diagnostic-label will qualify for, but another will not. And of course always the question of " stigma " is in parents' eyes if nowhere else. " Reluctance " however does not translate into " no diagnosis " . Equally, the issues of cure and medication are non-issues. How else explain the " sky-rocketing " rise in AS diagnoses? - Bill -- WD " Bill " Loughman - Berkeley, California USA http://home.earthlink.net/~wdloughman/wdl.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 My daughter is a psychiatrist in residence who is figuring out what area she would like to focus on permanently. In a conversation, I suggested to her that Aspergers was a growing field, in its infancy in terms of understanding. Her reaction was interesting. She dismissed it as a possible area of concentration because it was "uninteresting." She said that the Asperger patients are usually functioning pretty well with some social/relationship problems, but certainly not in need of her expertise as a physician. DanekaWD Loughman wrote: Janet Zimmerman wrote: > a quick thought from me... does anyone suspect that doctors are > reluctant to DX AS because there is no 'cure' or 'medication'? Medical > doctors are not trained to teach coping skills gained by trying to more > fully understand conditions like AS. jkz The reluctance is shown not just by MDs, but throughout the entire health-care and mental-health professions. Well-enough documented, and there are extant public acknowledgments of such by those involved. Sorry, no refs ready to hand. Google for 'em. The reasons given are as numerous as the people giving them. Often it comes down to money, as in what insurance will or won't pay for. Other times it comes down to what services one diagnostic-label will qualify for, but another will not. And of course always the question of "stigma" is in parents' eyes if nowhere else. "Reluctance" however does not translate into "no diagnosis". Equally, the issues of cure and medication are non-issues. How else explain the "sky-rocketing" rise in AS diagnoses? - Bill -- WD "Bill" Loughman - Berkeley, California USA http://home.earthlink.net/~wdloughman/wdl.htm Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Janet Zimmerman wrote: > a quick thought from me... does anyone suspect that doctors are > reluctant to DX AS because there is no 'cure' or 'medication'? Medical > doctors are not trained to teach coping skills gained by trying to more > fully understand conditions like AS. jkz One reason is because it is a very serious diagnosis with in some countries legal implications. Can only be made by a qualified person. A formal written diagnosis is considered a legal document classifying as a disabled person. Asperger's and PDD-NOS are both difficult diagnosis where it might not be clear until quite late " we catch most by age 16 " A common instance is secondary schooling going very wrong, that is when it is picked up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2007 Report Share Posted December 20, 2007 At 05:29 PM 12/19/2007, wrote to Helen: >** My gut feeling suggests you might have AD/HD as well, just like >me. I say that because of the very thing you suggested with giving a >response without thinking about it first or having that boundary in >which will help you determine what course of action to take. I agree totally, ! But females don't usually get the HD label, just the same way the experts think only one in four AS are female. I guess we hide it well <smile!> - Helen Quote Link to comment Share on other sites More sharing options...
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