Hello and an introduction

[Want2Help]

Hello everyone,

I thought I would say "hi" and give a brief introduction. My name is Lisa and I live in Ohio. My stepmom's sister was diagnosed with ALS (after an initial diagnosed of PLS) about 1 1/2 years ago. I am very close with my stepmom and over the years have also become close with my "step" aunt. They are as much my family to me as blood-related family is.

I guess it's ironic that I come here now, but my aunt is moving to another state next week because she needs to live with someone in order to be safe and get all the care she needs. Although I know it's what is best for her, I am going to miss her so much and I am having a hard time realizing that after next week she won't be here any more for me to visit so easily. (She's going to live with other relatives who have offered their home to care for her, allowing her to avoid institutional care.) I am so glad that she has someone who loves her so much and will be there for her, but I am also sad that ALS has taken so much of her independence so quickly that she has to go ahead and move already. It's such an unfair disease.

So I guess after next week I won't really be a "caregiver" anymore, (and have only been a minimal caregiver thus far-more of a mental help than a physical one, I guess......). But, I still want to support her and I know that this place will help me to find out information on drug trials, treatments, etc.....for me to continue to help her for as long as possible. And that's why I am here. I look forward to getting to know all of you.

 

[brooksea]

Hey Lisa,

Please feel free to ask any questions you may have. Someone will most likely have the answer.

It is nice to read that you are close to your step mom and your step aunt. It sounds like you have a very loving family.

Any way you can find to support your aunt I know will be appreciated by her and your step mom. Lots of people don't realize that the simplest efforts sometimes carry the greatest results.

 

[Want2Help]

Thank you, CJ. It has been a lot of work to get to the closeness we have now, but it has been and is very worth it. Of course, along with the positive comes the negative-such as feeling so scared and hurt when a loved one gets a diagnosis like ALS.

My aunt is moving to Georgia next week and will be attending the Emory ALS clinic from now on. I told her about this site and hope she'll begin to visit here if she needs information or support once she's moved. She doesn't know nearly as many people down there, but hopefully she'll find a church and make new friends and not be too isolated. And of course she'll have her brother and his wife right there all the time, which has to be better than living up here alone, even with lots of friends here.

 

[brooksea]

Lisa,

Emory Clinic has a great bunch of folks!

Is she moving to the metro ATL area?

She will need to get with the ALSA of GA. They can be very helpful and they have support groups that she might be interested in. Also, she needs to register with the MDA. Both of these organizations can provide much needed support.

There is also in Metro ATL, a project that is trying to get off the ground to build an ALS "home." There is already one being built in Boston. We are trying to help with this and it seems to be a political thing more than a money thing. But, we hope this will be accomplished in order to help all of those with ALS that have no one to care for them, especially if they decide to vent.

 

[Want2Help]

She's moving to Dawsonville, I believe. She said it's a pretty small town and that it's not really easy to get anywhere from there as far as having highway systems nearby, etc.....If you know of any fairly local support groups or info for around there that I could share with her, that would be wonderful. Thanks again for your kind welcome.

 

[brooksea]

Dawsonville is in the mountains of North GA. Beautiful Amicalola Falls is located there.

I don't see where there are any support groups set up near Dawsonville, but we also had to travel a long way to go to our first meeting. However, she would still need to register with the ALSA of Ga, since they do come out to your home and assess the PALS needs and deliver loaner equipment, etc...

Here is link to ALSA GA re support groups:

http://www.alsaga.org/pfc/pfc_support_groups.asp

ALS ASSOCIATION SUPPORT GROUPS:

The Association offers monthly support groups throughout Georgia. Support groups provide an opportunity for patients, family members, caregivers and friends to come together to share stories, hear the experiences of other PALS and to get information. Scheduled are a variety of speakers to increase your knowledge about community resources and effective strategies for living with ALS. Notices are mailed to PALS registered in our database, but please contact Crystal Jackson if you would like to recieve a mailing for a particular area 888-636-9940.