Re: being a support person

[Guest guest]

Annie, this topic has been brought up before. I do not have any family members that have been diagnosed with Achalasia. My grandmother did however have problems with her throat. She had a Diverticulum (that is a pouch or sac that extends off the bowel wall or GI tract) and it was fixed with surgery. Then she also had Parkinson's Disease and that effected her throat and her ability to eat, drink and talk. I have to wonder if some of the diseases like Achalasia, Parkinson's and Alzheimer's are somehow connected due to the loss or degeneration of the nerves or neuro transmitters. Maybe one day researchers might find a connection with all these disease and that might lead to fixing the problems.

in Suffolk

In a message dated 5/1/2006 4:09:03 AM GMT Standard Time, annie_msu@... writes:

Hi everyone,I've been a lurker on this message board for a while now, and I waswondering how many of you out there are the sibling, parent, or childof a person with Achalasia? If so, what has it been like for you? Whatare some of the things that you do to help out, especially whendreaded surgeries or diagnoses come along? Have any of you had to dothis long distance?Thanks!Annie

[Guest guest]

Annie,

Hi! Welcome to posting on the group ! I'm a support person who

sometimes participates with the group. Who is it that has achalasia

in your family? My husband is the one at my house, but he doesn't

have achalasia. He has a different esophagus motility problem,

Diffuse Esophageal Spasm (DES). DES is rarer than A, so we're always

struggling to get more info on it (and no, there isn't a DES group out

there). Some days, I really feel like the outsider here, I'm not the

one with the esophagus problem, and my husband doesn't even have A.

These people have been wonderful, though. They've given me tons of

support and information since I joined, last summer. Being the

support person can be hard, too. Of course, being the one with the A

or DES can't be a picnic, either, but it's hard to see your loved one

with problems, also. You are being a support person long distance?

That must be tougher. Good luck and please post more about who has

the A and where you are, etc. I can relate to a lot of what you're

going through!

in Michigan

wife of , with DES

>

> Hi everyone,

>

> I've been a lurker on this message board for a while now, and I was

> wondering how many of you out there are the sibling, parent, or child

> of a person with Achalasia? If so, what has it been like for you? What

> are some of the things that you do to help out, especially when

> dreaded surgeries or diagnoses come along? Have any of you had to do

> this long distance?

>

> Thanks!

>

> Annie

>