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Support Group for Young On-set discussion! Thoughts?
Smilesyourway
Posted: Tuesday, January 29, 2019 1:17 PM
Joined: 1/11/2019
Posts: 70


Tomorrow I am having lunch my states chapter alz., Executive Director.  I'm in hopes to resolve and get help starting up a young onset  support group.  My pychologist, the director, my husband and I are going to meet and bounce a few ideas around. 

I feel there is a need for a forum where we can get together and share experiences, ideas information and solutions, fears and tears. 

I have noticed that are numerous caregiver support groups, but nothing in my area for those with the disease.  Any experiences you can share on the topic would be sooooo valued.  Please share your thoughts. 

Smiles. 


Mimi S.
Posted: Tuesday, January 29, 2019 4:00 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world, Smiles. I'm so glad you found our site.

I am so glad you are having that meeting. Unless you are in a large metropolitan area, you may find there are not enough Early Onset folks to have a group. Do talk about inviting anyone with the disease to your group. Several areas have Memory Cafes which sound just what you are thinking about. Just a place to sit and chat with others with any kind of memory problem.  The One just across the street from my apt. is too program centered for my tastes. It is too program based and little chance to just talk.

And getting to know your state's Executive Director is great. There are so many opportunities for you to become active locally, state wide and nationally.  Do inquire about the national forum in DC this spring. The main purpose is to tell our story and lobby legislators. I went for several years. To me, the main advantage was meeting so many others in Early Stage, most of whom were younger onset. It just seems that your numbers are only a small % of folks diagnosed, but you are a very active, vocal group.

Enjoy!!!!


Iris L.
Posted: Tuesday, January 29, 2019 10:13 PM
Joined: 12/15/2011
Posts: 16231


It's a great idea.  I attend such a group, but it only meets once a month and is for PWDs and care partners together.  Will you allow patients with a dx of cognitive impairment to attend?

 

Iris


Smilesyourway
Posted: Tuesday, January 29, 2019 10:38 PM
Joined: 1/11/2019
Posts: 70


Absolutely Iris, MCI folks and all those with dementia diagnosis. The initial diagnosis was such a hit for me, I spent a year researching, reading, getting my affairs in order.  Denial, depression, anger.........the whole gammet.  It was and still often is such a lonely place.  You seem so normal on the outside, but notice every little blip coming from that brain.  I don't want to spend my clarity years lonely and depressed.  It seems that whatever the situation or diagnosis one is handed often sharing and spending time with those of like kind can me comforting, helpful and resourceful. 

I'll let you know how it goes tomorrow. 

Smiles! 


Smilesyourway
Posted: Tuesday, January 29, 2019 10:48 PM
Joined: 1/11/2019
Posts: 70


Thanks Mimi for you imput.  I have heard of the memory cafe in another location in my state.  I'm looking for exactly what you said......a place to just have coffee and chat or share what's working what doesn't as far as reminder systems etc.  The chapter director shared that she knew of about 5 in the area that would more than likely be interested.  So I'm excited and hopeful.  Instead of calling it young or early on-set perhaps "newly diagnosed" support group.  That way all ages could contribute.  Thoughts? 

I did apply for the national forum for early on-set.  I have not had an interview as of yet and am not sure I'm much of a public speaker.  When I'm nervous I now tend to studder and pause to find words often so......we'll see.  You sound like a great one to get a little insight on the lobbyist gig though.   

I appreciate your post, thank you. 

Smiles 


Iris L.
Posted: Tuesday, January 29, 2019 10:56 PM
Joined: 12/15/2011
Posts: 16231


Smiles, I have been spending my time doing my bucket list and other things I enjoy.  You are very right; I found it important for myself to get to a place where my life was not all about despair.  Be aware, not everyone is at that place.

 

Iris


Smilesyourway
Posted: Tuesday, January 29, 2019 11:42 PM
Joined: 1/11/2019
Posts: 70


Indeed, indeed.  I'm not sure I'm not completely done with the depression and despair.  One thing we all have in common will be the diagnosis in one form or another.
Lisita
Posted: Wednesday, January 30, 2019 4:43 PM
Joined: 4/3/2018
Posts: 64


hey y'all i am trying to talk these lovely people of the alz society to use use people instead of computers for support what do y'all think ? they are lovely but are convinced that the computer is the right thing to use to connect us it is good but a suport group with real people works i am social worker that have used them nothing like human contact !!! let me know your thoughts 

thanks  lisa kesecker 


Iris L.
Posted: Wednesday, January 30, 2019 5:55 PM
Joined: 12/15/2011
Posts: 16231


Hello Lisa. I am not understanding.  Where do you find computers in the support groups?

Iris


Mimi S.
Posted: Wednesday, January 30, 2019 8:00 PM
Joined: 11/29/2011
Posts: 7035


Smiles,

You might miss some good folks by calling it 'recently.'

Ask for more information on attending the forum this spring in DC. It is entirely different from the Early Stage Group. That is a year long commitment and someone from national will always be working with you. I remember so many interviewers wanted a 'poor me, life is a bummer' interview.  I had to explain that they had to look elsewhere, I was much too busy to feel sorry for myself. 

When I volunteered locally and  expected to be stuffing envelopes. Much to my surprise I was speaking a fund raiser. Yes, I'm always nervous beforehand. But one is usually just telling your story and you know that.

 

You are already proactive. You'll do great. Welcome on board.
Iris L.
Posted: Wednesday, January 30, 2019 10:18 PM
Joined: 12/15/2011
Posts: 16231


Smiles, most of the time they want a care partner to attend events with the PWD.  Do you have a care partner?

Iris


alz+
Posted: Friday, February 1, 2019 9:16 AM
Joined: 9/12/2013
Posts: 3549


SMILES -

yes to your efforts!

Want to say that some people may sit and not speak, those people are taking in and processing too.

Just to have someone with your spirit and intent to make this something other than the official horror story scenario is part of movement to change the current perspective which is 90% help caregivers.

I believe the new people outside pharmacological industry are going to find remedies that help us and slow down progression within 5 years. People who are outside the plaque and tangle belief about the illness.

Interesting news about gum bacteria and dementia. Have to get out of bed to fire hospice nurse in an hour.

Love having you part of this community. Blaze a trail!

Hi everyone!


Iris L.
Posted: Saturday, February 2, 2019 12:42 AM
Joined: 12/15/2011
Posts: 16231


Blazing a trail!  I love that!  

You continue to inspire us, Alz+! 

Iris

 


Smilesyourway
Posted: Tuesday, February 5, 2019 11:46 PM
Joined: 1/11/2019
Posts: 70


Hi All:

 Blazing a Trail!  Love it!  Well, my meet with our Alz. Director along with my hubby and my Psychologist went great.  We have our first support meeting at a coffee shop on 2/11/2019 in a private reserved room.  There are a couple docs involved through the director that will send early stage folks to her for an informal interview.  I'm not much into logistics and rule setting, but VERY excited to meet some local folks that are on the same river raft that we are out here.   

My psychologist apparently is going to facilitate, so that is SUPER.......as she is kind and gentle and very good at her job.  Not sure she knew she'd be the facilitator, but the ALZ Director had a way with words.  Giggle.......

They decided to have a closed group for those of us that have EO / ES <-- look at me go.  Tee-hee.  Then bi-weekly invite our care partners.  I'm sure the first 4 meets will be trail and error while we work out the details. 

Alz+ Did you land in Sunny California?  I'm here in -6 degree ....... and would love some warm sunshine. 

Excited to here from you all. 


Smilesyourway
Posted: Tuesday, February 5, 2019 11:50 PM
Joined: 1/11/2019
Posts: 70


Lisita:

I totally agree with you, that's why I recruited my hubby, my psychologist and the Alz State Director to meet and discuss the possibilities and walla........we have a meet set up for next Monday.  There are only a couple of us to start with, but Rome wasn't built in a day as my mother used to say. 

I will keep you posted as to how this new support group goes in my community. 

Cheers!