RSS Feed Print
Early onset and trying to find resources(6)
GBBry
Posted: Thursday, January 15, 2015 10:51 PM
Joined: 1/15/2015
Posts: 7



able to visit many of his relatives along with favorite places.

My question today, do you find it difficult to find services for those with Early Onset? I feel as if we're drowning while standing knee deep in a river. Thank you Patty Loveless for that song. We're planning on driving there, actually I'm doing the driving these days, to visit the groups.

I'm just tired but he's excited about exploring and the possibility of relocation. We were lucky enough to attend the conference that was held in D.C, just shortly after he was diagnosed. Overwhelmed at times but still hopeful.



jball49
Posted: Thursday, January 15, 2015 11:25 PM
Joined: 1/15/2015
Posts: 7


Hi, I totally understand your frustration. I was first diagnosed at age 48 in 2007. We contacted our local chapter and got involved in their support group in 2008 and have been active ever since. But that is once a month and doesn't really fill much time for someone on disability but still able to do a lot of things. A year ago a group of us that had been communicating that are from many different countries started a new organization that membership is ONLY open to people with dementia because those of us running it all have dementia and we are uniquely qualified in ways many professionals don't understand to help others that live with dementia. We run weekly "virtual" support groups that are the same small group each week which allows people to get comfortable with each other as well as a post type internet group that is only people with dementia. The organization is Dementia Alliance International and there is an alias redirect much easier than typing the full address at infodai dot org and a shortcut to our free membership for anyone with dementia at joindai dot org , I have spelled out the dot which is period because I doubt that I can put clickable links anyway. Have him check us out, we have many things he can get involved in if interested!

llee08032
Posted: Friday, January 16, 2015 6:31 AM
Joined: 5/20/2014
Posts: 4408


jball49,

I just signed up for the website that you mentioned. I am interested in having an actual dialogue with persons and have been searching for such a venue. Moreover, I like the idea that it is just for us! Thank you.

GBBry,

I would suggest that you visit the spouse and partner board in addition to searching for the information you need. Perhaps your husband would like to join us on the patient board. Best of luck to you.

eaglemom
Posted: Friday, January 16, 2015 8:02 AM
Joined: 3/7/2012
Posts: 2774


Welcome GBBry. My DH too was diagnosed as Early Onset at 54. We are now 3 years into the journey and I finally think the shock, etc has disappeared. We participate in two very different ALZ lead support groups. One is very structured - group is divided into participants & care givers. We have discussion time, but this is where we learn how to deal with certain concerns we maybe having. Sometimes we have professional speakers. That group meets 2x's a month. Now, the other group is totally the opposite. Very open and held every Friday. Each Friday has a "theme" that we know before hand. That way the "theme" is the topic. Its just easy going relaxed atmosphere. As you can tell both groups are polar opposites of each other.

Having said all of that, I truly do not know how we'd get along without the people in the groups. They have become lifelong dear sweet friends. I assume this is because they do understand exactly what each other is going through. We check on one another, have holidays and birthdays, etc. They've become our "family." Have you contacted your local ALZ office? Do they offer any support groups? It is unique that DH & I are always the youngest to attend these things. At first it felt "odd" to me for some reason. Then I quickly realized that we are there to - add new life & youth - to the groups. I don't even notice an age difference, nor do they. You just have to find what works for you and your DH. Are you near a community college? I know several people whom attend the senior over 55 free classes.

For us the key is to keep going & having fun. Is there something he likes to do as a hobby? Gardening, walking, reading, etc? Encourage it.

eagle

Mimi S.
Posted: Friday, January 16, 2015 8:53 AM
Joined: 11/29/2011
Posts: 7027


Dear GB,
It sounds as if your husband is very capable of joining us here. Please have him try it.

Now that the techs have made our chat room much easier to get on (Just click Chat rooms above, let's make an effort to try them again.
For example: tonight at 8 PM go on the chat room. of course, my problem is, will I remember?)
Wait around a bit and see if anyone shows up.

Warning: the chat room works well for us if there is a small group. It gets confusing for us if there is a larger group. If this happens, just be patient.

jball49
Posted: Friday, January 16, 2015 1:10 PM
Joined: 1/15/2015
Posts: 7


llee08032 wrote:
jball49,

I just signed up for the website that you mentioned. I am interested in having an actual dialogue with persons and have been searching for such a venue. Moreover, I like the idea that it is just for us! Thank you.

GBBry,

I would suggest that you visit the spouse and partner board in addition to searching for the information you need. Perhaps your husband would like to join us on the patient board. Best of luck to you.

Thanks GBBry, I look forward to getting to know you. My name is John and if you signed up then you should have already received an email from me.