New member

Posted August 24, 2008 · August 24, 2008

Hi Beth,

I too had MAI (which I contracted in Florida) and then, about 5 months later developed Bronch. I was on 2000MG of antibiotics for 18 months for the MAI. My Plumonologist felt that the Bronch. was a result of the MAI.

Be well,

Eileen-FL

Hello

I have recently been diagnosed with this problem and am keen for the support of a group. Can someone please confirm that this group originates in Australia. Thank you.

Can someone also assist with with some ideas on the following

My problem seems to be caused by MAC. Does someone else have this and if so, what specific problems has this caused.

I am experiencing considerable hair loss and this is causing me more distress that the bronchiectasis. Has anyone else had this problem and if so, how have they dealt with it?

Is having hot flushes and sweating a feature of this problem or is it solely menopausal.

Thanks

Beth

Posted January 2, 2012 · January 2, 2012

Hi,

My name is and my husband has just been diagnosed with high functioning Aspergers. We have been married 3 years and together 5 and have a 17 month old son. I'm very excited to find this group and I'm hoping others will help me understand my husband better. This last few years have been really rough for us, had a really hard time holding a job. But since the diagnosis and help for our therapist he is doing much better. Our son was born with a heart condition that required surgery at 6 months old and during the whole process I didn't understand why he was vacant? He would say inappropriate things and caused a lot of drama within the family. The worst part was that he was unable to bond with our son, out of fear. I won't lie that I almost gave up on him, but I'm thankful that I didn't. For those other spouses, please tell me how you have delt with the lonliness that comes with this diagnosis? Thanks so much

Posted January 3, 2012 · January 3, 2012

wrote:

> Now he is telling me that he doesn't always feel it and does it because he

knows it's what is expected. Its been a very hard pill to swallow. It's really

hard not to take this personal.

Would it help you to take it all less personally if you considered that

his difficulty feeling and expressing love is more about *his* own

struggle to communicate in this way -- not about something wrong with you.

That he continues to try to do what he believes is expected of him

(despite not fully understanding what, how, or why) is an act of love in

itself, and a measure of how much he cares for you. His efforts sound

heartfelt to me, even though they may not come altogether naturally to him.

Only in fairy tales do lovers always know how to express their love in a

purely spontaneous, instinctual manner. The rest of us down here on

Planet Earth sometimes need to work at it a bit more.

Best,

~CJ

Posted January 3, 2012 · January 3, 2012

Blanca thanks so much for your kind words. What I'm finding the hardest to

accept is how much things have changed since the diagnosis. We had what I

thought was a loving and normal husband and wife relationship. Now he is telling

me that he doesn't always feel it and does it because he knows it's what is

expected. Its been a very hard pill to swallow. It's really hard not to take

this personal. Our son is finally doing well and he has a job that he loves. Am

I ever going to have my best friend back? I have gotten some books that were

reccomended on this site. I'm just waiting for them to come in the mail. Thanks

again

>

> Welcome !

>

> I truly hope you find the support, info, insight you seek in this group. I

hope your baby is doing well a year or so after this heart surgery.

>

> Being a new mom, while juggling/navigating an AS Dx on a SO is a feat and only

for the strong, and my warmest hug to you.

>

> It's almost as if you must put baby down/aside just to see how you can make

hubby feel better or at ease, no matter what. I feel your lonliness, your

emptyness and many of us have been there, I have been there plenty, as I have 2

sons, a dx 8 year old and an energetic lil 3 year old Einstein. I can understand

your questioning on your hubby's avoidance w baby, as I too experienced

something similar when babies were born, I was alone and he didn't bond w them

or seemed to acknowledge my needs. My hubby's a wonderful provider, he's on top

of our every need; but he seemed rather absent when it came to baby, and annoyed

by constant crying, later w the yelling/screeching screams or cries. He's gotten

a whole lot better and more tolerant on " kids just being kids " , but it was tough

the first 6 years of parenting, as he expected a 3 year old to behave and sit

quietly as a 10 year old in military school.

>

> The lonliness or empty feeling can come and go, but sometimes, even w hubby

making the effort to perhaps help or comfort you, and you see it, but you still

feel empty. I'm glad to know therapy has helped your husband, but you might

benefit from therapy as well, by yourself and perhaps eventually together. The

trick is finding experienced therapists w AS relationships. Also, never

underestimate the power of female connections/bonds/mentors, they are your

lifeline to your sanity to say the least. I know it is very hard to do, bc I

still struggle to do so in person, but you must plug into a source of

support/strength/encouragement and fun and in person if all possible, to fill

that Love tank. Yes, your husband should be the provider of that love, but

oftentimes, in my experience, they miss. Our children fill in as well, but

there's only so much relief you can decompress on baby talk. ;-)

>

> Finding out what works for you two may take time, but never stop trying to

figure each other out. You'll be amazed a year from now, heck 6 mos from now how

far you've come just bc you took the time to search, learn and grow. Of course,

the effort must be mutual and ongoing. Finding the best way to communicate is

key. Some of us use texting or emails as prime mode of communicating, others use

big boards at home w lists, calendars, post its, color coded tabs, spiral

notebooks, etc. Simplifying lists, requests, needs, wants, and expressing them

has worked wonders for others. The ideas are endless, one has to work. ;-)

>

> You are not alone, there are more of us out there, they just don't know it

yet! ;-)

>

> Be well, stay connected, and I wish you the very best!

>

> Cheers!

>

> Blanca

> Blanca M. Lara Rocha

>

> New member

>

> Hi,

>

> My name is and my husband has just been diagnosed with high

> functioning Aspergers. We have been married 3 years and together 5 and

> have a 17 month old son. I'm very excited to find this group and I'm

> hoping others will help me understand my husband better. This last few

> years have been really rough for us, had a really hard time

> holding a job. But since the diagnosis and help for our therapist he is

> doing much better. Our son was born with a heart condition that required

> surgery at 6 months old and during the whole process I didn't understand

> why he was vacant? He would say inappropriate things and caused a lot of

> drama within the family. The worst part was that he was unable to bond

> with our son, out of fear. I won't lie that I almost gave up on him, but

> I'm thankful that I didn't. For those other spouses, please tell me how

> you have delt with the lonliness that comes with this diagnosis? Thanks

> so much

>

Posted March 25, 2012 · March 25, 2012

& Annette,

I am also a new member, and am in a somewhat similar situation. I have been

married to my husband for 2 years (we had dated a number of years before we got

married). We now both agree that he has Aspergers. We've tried marriage

counseling 3x and it didn't work. It's been a grueling and devastating marriage

for me. I really feel like the relationship is sucking the lifeforce out of me,

and I haven't really found many venues of support (and get essentially no

emotional support from my husband--he's still figuring out how to return my

phone calls).

One book that is ok is 22 Things Every Woman Must Know if She Loves a Man with

Asperger's Syndrome, by Rudy Simone. It's more of a pamphlet than a book, and

you will probably already be aware of most of the 22 things she writes about.

Still, I was glad I read it.

> >

> > Hi,

> >

> > My name is and my husband has just been diagnosed with high

> > functioning Aspergers. We have been married 3 years and together 5 and

> > have a 17 month old son. I'm very excited to find this group and I'm

> > hoping others will help me understand my husband better. This last few

> > years have been really rough for us, had a really hard time

> > holding a job. But since the diagnosis and help for our therapist he is

> > doing much better. Our son was born with a heart condition that required

> > surgery at 6 months old and during the whole process I didn't understand

> > why he was vacant? He would say inappropriate things and caused a lot of

> > drama within the family. The worst part was that he was unable to bond

> > with our son, out of fear. I won't lie that I almost gave up on him, but

> > I'm thankful that I didn't. For those other spouses, please tell me how

> > you have delt with the lonliness that comes with this diagnosis? Thanks

> > so much

> >

>

Posted March 25, 2012 · March 25, 2012

& Annette - I'm a new member as well. I can greatly empathize w/ you both. I was unknowingly married to an Aspie for almost 18 yrs. Suffice it to say that he scared the living daylights out of me at the end. I had always noticed some odd quirks that I couldn't put my finger on. I noticed poor eye contact early on when we were dating but had no idea that it meant anything significant. He was super smart (MENSA) w/ a PhD in Economics but had no common sense, was physically clumsy, obsessed w/ exercise (ran ultra marathons until discovery of a congenital heart condition put an end to that. As you may already know, Aspies tend to have higher incidences of heart & digestive problems - he had both). He was greatly disturbed by the car radio or

me occasionally moving furniture. Would never wear anything but a select set of clothing. Seemed very inconsiderate at times. Kept a rigid routine. Was visibly irritated if I interrupted him from a project he was working on. His dad (a retired MIT engineer) & his 3 younger brothers are also affected. It took 4 months post-separation to figure out what the hell was going on. I had never heard of Asperger's before but when I researched it, all the pieces fit uncannily together. I tried in vain to get us to AS counseling (even tho he admitted to me at divorce mediation that he knew he had Aspie characteristics, albeit reluctantly & defensively). Fortunately, & surprisingly, there were alot of supportive resources where I was living at the time which solved much of the mystery. Met some wonderful Aspie individuals at support groups who shared

their perspectives with me & helped me to understand more. I've probably read 25-30 books. Meyer was even kind enough to call me when I had some questions - his advice was very insightful. That was almost 4 yrs ago. I have since moved back to my home state, have a job I enjoy, & a wonderful guy in my life (an old friend, actually). Things have worked out well but, oh my, it was a wild ride - a bewildering, almost surreal experience. I still find myself fascinated to learn more about the Aspergers condition. Have you guys checked out Kingsley Publishers yet? It's a great book resource. I have also gotten alot out of the Tony Attwood Books. I hope your relationships work out successfully & that the challenges ahead result in positive & happy outcomes. Kind Regards, . To: aspires-relationships Sent: Saturday, March 24, 2012 7:58 PM Subject: Re: New member

& Annette,

I am also a new member, and am in a somewhat similar situation. I have been married to my husband for 2 years (we had dated a number of years before we got married). We now both agree that he has Aspergers. We've tried marriage counseling 3x and it didn't work. It's been a grueling and devastating marriage for me. I really feel like the relationship is sucking the lifeforce out of me, and I haven't really found many venues of support (and get essentially no emotional support from my husband--he's still figuring out how to return my phone calls).

One book that is ok is 22 Things Every Woman Must Know if She Loves a Man with Asperger's Syndrome, by Rudy Simone. It's more of a pamphlet than a book, and you will probably already be aware of most of the 22 things she writes about. Still, I was glad I read it.