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Again, nothing for Early Stage, Early Onset Patients
Iris L.
Posted: Tuesday, March 6, 2012 4:07 PM
Joined: 12/15/2011
Posts: 16187


This morning I went to a talk sponsored by one of the local senior centers and a home care agency.  The topic was on Dealing with Dementia.  The talk was excellent, but the information was directed towards caregivers of mid to late stage patients. 

 

After the talk I went up to the director of the senior center and discussed with her the possiblity of having a support group for early stage patients.  She told me there were plenty of support groups for patients and caregivers. I told her I was thinking of a group just for early stage patients.  She had a puzzled look on her face, but said she would be willing to discuss it with me. 

 

I think I know what she's thinking of.  By the time many dementia patients become diagnosed, they are unable to leave their homes by themselves, and thus would require a caregiver to attend a support group with them.  In actuality, I believe these types of support groups are primarily for the caregiver, but offer a diversion for the patient so the caregiver can have a few moments without responsibility. 

 

I'm thinking of a sort of Memory Club, just for early stage patients who are able to get out and about on their own, or at least can function in a support group if they have transportation to that group.  I'm talking about people like us.  No one seems to believe that we exist, or that we could benefit from associating with others like ourselves.   

 

Does anyone understand me?  Does anyone else think a Memory Club for us patients would be feasible?  There should be something for us before Adult Day Care and Assisted Living. 

 

Iris L. 

 

 


Myriam
Posted: Tuesday, March 6, 2012 4:39 PM
Joined: 12/6/2011
Posts: 3326


Hi, Iris. At the Alzheimer's Assn office in Seattle, once a month we have an early onset, early stage group that meets once a month for two hours. It's wonderful.  There are about 15 of us that meet with a volunteer liaison. Does your state association provide something like this?
Mimi S.
Posted: Tuesday, March 6, 2012 6:45 PM
Joined: 11/29/2011
Posts: 7035


Iris,


Do still have the contact name for that person? Please have her get in touch with the PA Early Stage Advisor: Candy Yingling <Candy.Yingling@alz.org> for more information.


The day after the DC Forum, we are having an entire day long conference just for Early Stage in Harrisburg. Hey, want to come? Any one else want to come? I'll be there.


We now have a monthly over the phone support group. Meeting #2 coming up.


Pittsburg has had one style of support group for several years. They also meet with their Care Partners once a month in a group. Then they split into 2 groups, so each can talk privately.


And iris, they do let people like you and me, with no partner, to come.


The Alz. Assoc. publishes an annual statistical report. The theme of this year's report is we Early Stagers...people living alone.  There will an interview/report/something about me in it. It's out this week.


We are being heard. 


But we have to shout louder.  Two messages:

1. Get tested early.

2. Provide us with support.


Mimi S.
Posted: Tuesday, March 6, 2012 7:19 PM
Joined: 11/29/2011
Posts: 7035


PS.

http://www.usatoday.com/community/profile.htm?UID=1b7035cf54d97057&plckPersonaPage=BlogViewPost&plckUserId=1b7035cf54d97057&plckPostId=Blog%3a1b7035cf54d97057Post%3ad72fb77f-8c66-4542-af37-e9ce2756a269&plckController=PersonaBlog&plckScript=personaScript&plckElementId=personaDest

 

Just what you want, only in the DC area.


Iris L.
Posted: Tuesday, March 6, 2012 11:20 PM
Joined: 12/15/2011
Posts: 16187


Myriam, your Early Onset, Early Stage group sounds great!  I'm glad your state is making an effort to outreach.   

 

Mimi, I liked the article.  And I'm glad to know that in PA you have a telephone and an in-person support group. 

 

Lisa, I'm sorry your area has nothing for early stage patients. 

 

Here in southern California, I have not been allowed to participate in the Alzheimer's Association's early stage groups because my diagnosis is not officially "Alzheimer's."  The director that I spoke with today is with a hospital-based senior center. 

 

 Currently I attend a Women's Peer Support Group that is for women with any type of disability. 

 

Iris L. 


Mimi S.
Posted: Wednesday, March 7, 2012 8:57 AM
Joined: 11/29/2011
Posts: 7035


I'm glad you found a support group for yourself. is it small enough so that each can be heard?
Moderator
Posted: Wednesday, March 7, 2012 2:03 PM
Joined: 12/7/2011
Posts: 152


Hello ALZConnected Members,

 

Thank you so much for writing and I'm sorry to hear about your difficulties in finding programs in your area. I’d like to provide some support by offering assistance in finding programs in your area. The Alzheimer’s Associations has local chapters across the nation, providing services within each community. If you take a look at our website, www.alz.org, you will find the option to search for your local chapter. You can enter your zip code where it says, “Find us anywhere”. Once you directed to your local chapter’s specific site you will then be able to find more in depth information about what’s available to you. 

  

Another option you may want to consider, would be to call our 24/7, toll-free Helpline at 800-272-3900. Our specialists will be able to provide you with more information on local programs, as well as any contact information or details you may need!

 I hope this has been helpful!

  

Take good care! 

  

ALZConnected Moderator 

 


frustrated047
Posted: Wednesday, March 7, 2012 6:14 PM
Joined: 12/18/2011
Posts: 36


That is so wonderful for you, Myriam that you have a support group and your in a big city such as Seattle!   

 

I have a person that has been coming to my home once a week.  He's from one of my county's agencies and tries to help me find some support.  This has not been in his area of expertise, so he has truly had to do some digging.  He called me this afternoon to confirm our meeting tomorrow and told me he might have found something promising, so I'm keeping my fingers crossed!   

 

Your so right Iris L.  that there is so little out there for early stage, early onset patients.   I wish you lots of luck in finding somthing that fits your needs and is good for you   


Iris L.
Posted: Wednesday, March 7, 2012 11:31 PM
Joined: 12/15/2011
Posts: 16187


I find it very frustrating to have the moderator interrupt my thread with my fellow patients about finding local support for Early Stage, Early Onset patients. 

 

Iris L. 


Iris L.
Posted: Thursday, March 8, 2012 10:15 AM
Joined: 12/15/2011
Posts: 16187


Moderator wrote:

Hello ALZConnected Members,

 

Thank you so much for writing and I'm sorry to hear about your difficulties in finding programs in your area. I’d like to provide some support by offering assistance in finding programs in your area. The Alzheimer’s Associations has local chapters across the nation, providing services within each community. If you take a look at our website, www.alz.org, you will find the option to search for your local chapter. You can enter your zip code where it says, “Find us anywhere”. Once you directed to your local chapter’s specific site you will then be able to find more in depth information about what’s available to you. 

  

Another option you may want to consider, would be to call our 24/7, toll-free Helpline at 800-272-3900. Our specialists will be able to provide you with more information on local programs, as well as any contact information or details you may need! 

 

 I hope this has been helpful! 

  

Take good care! 

  

ALZConnected Moderator 

 

 

 

 

Moderator, I have already stated that I have been prevented from participating in Alzheimer's Association Early Stage Early Onset programs because my diagnosis is not Alzheimer's disease.  This is from two local Alzheimer's Association chapters.   

 

That's why I am searching elsewhere for local support.  What you are suggesting I have already done, several times.   

 

I have also posted that I am not allowed to participate in local Alzheimer's Association Early Stage Early Onset programs on "Questions for the Care Consultant" on the old board.   

 

 

Iris L. 



Myriam
Posted: Thursday, March 8, 2012 12:44 PM
Joined: 12/6/2011
Posts: 3326


Iris L. wrote:

I have also posted that I am not allowed to participate in local Alzheimer's Association Early Stage Early Onset programs on "Questions for the Care Consultant" on the old board.   

 

I'm so sorry, Iris. It's not logical...or right...that you not be allowed to take advantage of the association's Early Stage Early Onset programs! Have you spoken to someone at the national office about what's going on with your chapter? Dementia is dementia, and your chapter should not be discriminating between which dementia they will recognize.

Iris L.
Posted: Thursday, March 8, 2012 2:14 PM
Joined: 12/15/2011
Posts: 16187


I did speak with National and they got me connected with another chapter, outside of my local area.  

 

The Early Stage case manager has been talking with me and advising me over the telephone.  She has been very helpful and I appreciate her efforts. 

 

Iris L. 


SteveSanJose
Posted: Saturday, March 10, 2012 1:30 PM
Joined: 1/3/2012
Posts: 189


When I first started having memory issues I had a condition called MCI. Since I live a large city, I at that time,  joined a peer group for just memory impaired people. Since EOAD is such a small percentage of medical conditions a lot of times you have to join a group that deals with the symptoms you are having not the specific caucuses. Majority of people in a senior group are 65 and over, and would have AD rather tehn EOAD. Rememberr  EOAD below age 6% for all people with Alzheimer's have this. Thsi makes for few services specific to EOAD, So theat theg symptoms not EOAD its self.
firemedicinaz
Posted: Saturday, March 10, 2012 8:45 PM
Joined: 3/8/2012
Posts: 1


I have had a similar problem here in az. The people of the ALZ ORG have been very nice and helpful, however the programs that they have available are like apples and oranges. Like most areas and the percentages there just are not enough EOAD people in our area to warrant the funding for specific programs. It has been a challenge to find people in our situation. This message board has been great just knowing we are not alone. I am sure the symptoms of early alz are not too much different then my wife's but the dealing with it in our early 50's is somewhat unique. When you are in your 70's or 80's most of the time you don't have kids living at home, etc.. It looks like this site will help some dealing with the severe life changes we have in store for us. I really like the idea of a memory group that you mentioned Iris. The problem i have been having is just trying to find how many EAOD people we have here and the logistics of getting a small spread out group together on a regular basis. Thanks to all for your input, and as tough as is has been and is going to get remember we are not alone. Be safe all and hang in there. PS thanks for adding spell check    :o)
Mimi S.
Posted: Sunday, March 11, 2012 8:55 AM
Joined: 11/29/2011
Posts: 7035


Hi Fire,

Keep looking. Attend as many local Alz. Activities as possible. Keep spreading the word that you want to connect with others in the Early Stage of the disease. It's hard.

 

You can't wait for the Assoc. to do it, you do it. And then as soon as you find one or two others, begin meeting. 

 

I have begun a group and it's still hard. My group is for anyone in Early Stage. I live in NE PA and Florida is popular at this time of year. 

 

If you live in a Metropolitan area, you might have luck in forming a group just for Early Onset.  

 

Also, try setting a time when you will hang out in the chat room. Just bring something to do and hang around for 20 to 30 minutes. Please give several days notice and also be sure to post the time for each time zone. 

Figuring out time zones is something that is easy for those of us with the disease to mess up.

 

Good luck!


Mimi S.
Posted: Sunday, March 11, 2012 8:58 AM
Joined: 11/29/2011
Posts: 7035


PS,

Any readers in the Early Stage of dementia, who happen to live in NE PA, I'm having a meeting at my home this coming Thursday afternoon. 

 

Let me know and I'll provide a number to call for more details.


Collie
Posted: Sunday, March 11, 2012 10:45 PM
Joined: 3/11/2012
Posts: 1


Amen to your request.  My husband could have benefited from this in the beginning of the AD journey. He was a master horseman and was able to get him into a horse therapy setting which provided occupational therapy activities while riding the horse. I personally found that the facilities that claim to serve AD patients have not been fully educated in the Early On-set patients.  Seeing my husband do activities for the older generation were very hard for him to tolerate due to the fact that he was aware and that he was more high functioning then the older generation.  Continue to push for the mind activities.
atthebeach
Posted: Wednesday, March 14, 2012 2:19 PM
Joined: 3/14/2012
Posts: 1


I definately understand the value of an early onset support group. I just moved from NJ (suburb of NYC) to RI in February away from a fabulous weekly group of people who were also diagnosed with early onset.  I cannot tell you how much I miss everyone and the ongoing weekly support I received in that room.  I feel so private about this diagnosis, it was great to have a place of complete honestly to talk about my feelings and fears and prepare for the future. It was moderated by a psychologist and I am not sure how it was funded.  I only know not only did I help others, the support and advice from everyone got me through the difficult stages of leaving work, STD, LTD and eventually going onto permanent disability.
Iris L.
Posted: Wednesday, March 14, 2012 8:21 PM
Joined: 12/15/2011
Posts: 16187


I went back to the weekly dementia caregiving talk at the senior center yesterday.  The director, whom I had spoken with last week about starting a support group for early stage patients, was not there, so I could not show her the material I had copied for her. 

 

 Nevertheless, this senior center, which is connected with a hospital, will be offering three upcoming dementia-related programs. 

 

 --The Savvy Caregiver Program"--a free six-week program on developing good strategies that are needed to accomplish the goals of the caregiver. 

 

 --"Partnering with Your Doctor"--how to prepare and become an active partner in the healthcare of someone with dementia. 

 

--"Maintaining a Health Brain"--how to develop a healthy lifestyle that includes the essential pillars required to maintain a healthy brain. 

 

The first two will be offered in conjunction with the Alzheimer's Association.   

 

I plan on attending all these free classes, even if they are more directed toward the caregiver than the patient. 

 

Although I appreciate these message boards, I'm beginning to feel somewhat lost without local contacts who understand what I am dealing with. 

 

Iris L. 


Iris L.
Posted: Wednesday, March 14, 2012 8:56 PM
Joined: 12/15/2011
Posts: 16187


Welcome to the message boards, at the beach.  I"m sorry for your diagnosis, however.  Please join us and ask any questions you may have.  Feel free to begin your own thread by clicking on the green button "Add topic" at the top ot the Young Onset AD page. 

 

Iris L. 


Geegee
Posted: Wednesday, March 14, 2012 10:42 PM
Joined: 11/29/2011
Posts: 514


Iris, I know this has been a long quest for you.  I say don't give up or in.  Like Myriam said and I agree, keep talking to your local chapter.  Dementia is 


dementia and it would be beneficial for anyone that is sociable in early stage to have a support group.  National does not just recognize Alzheimer's dementia and no other.


When I was diagnosed 2 yrs ago, my chapter, Florida Gulf Coast Chapter, offered one early stage support but it wasn't in my area.  They serve 17 


counties. They referred me to a local Alz Assoc trained support leader group at the University of South Florida, Health Center, Johnnie Byrd Alzheimers Research Institute in Tampa FL.


 When I contacted them, they were willing to work with me and we formed an early stage support group.  Most of the members come through the advertising that USF Byrd Alzheimer's Institite does through their doctors and mailings.


We have a group that has been meeting for over a year once a month.  Most of them are like us.  Most are not able to drive but get a ride.  if their caregiver brings them, they wait outside.  Some of them get together to talk on their own.  


Anyone in the Tampa Bay area that is interested in attending can let me know and I will give you more information.  We would love to have you come to our 


meetings.  They last for 2 hrs.  A portion  is are very informative or educational.  The other part is support.  It's a good group that chooses if they want all support or the other format.


Today the Florida Gulf Coast Chapter offers 4 early stage support groups in its 17 county area.  Progress is being made.  It's just slow.


Mimi, 

By the way, don't forget you will see me at the Advocacy Forum in DC!!!!!  

It would be great if some of you could join us there in April.




Myriam
Posted: Wednesday, March 14, 2012 11:58 PM
Joined: 12/6/2011
Posts: 3326


Mimi,  

By the way, don't forget you will see me at the Advocacy Forum in DC!!!!!   

It would be great if some of you could join us there in April. 

 

 

 

I'm planning on being there.
 


Iris L.
Posted: Thursday, March 15, 2012 1:24 AM
Joined: 12/15/2011
Posts: 16187


Geegee wrote:

 

 
 

We have a group that has been meeting for over a year once a month.  Most of them are like us.  Most are not able to drive but get a ride.  if their caregiver brings them, they wait outside.  Some of them get together to talk on their own.   


 


 

Today the Florida Gulf Coast Chapter offers 4 early stage support groups in its 17 county area.  Progress is being made.  It's just slow.  


 

Mimi,  

By the way, don't forget you will see me at the Advocacy Forum in DC!!!!!   

It would be great if some of you could join us there in April. 

 

 

 

 

Geegee, this is great news about your four early stage support groups!  You give me encouragement that I can begin something like that here.  I know there is a need.  The patients are just hidden. 

 

Will the Advocacy Forum be broadcast online or available online after the forum?  I'd like to know what will be discussed at the Forum. 

 
Iris L.


 

 


 



wayne
Posted: Sunday, March 18, 2012 5:15 PM
Joined: 3/18/2012
Posts: 1


My wife was diagnosed almost 2 years ago at age 55 with Alzheimer's. We both attended a intensive 8 week introduction support group (one night a week). There wer about 8 couples in the group. After the 8 weeks we started attending the local early onset/early stage support group. Those of us that were in the 8 wk group decided that we did not want to meet just once a month. We had bonded during the 8 weeks and could not get by one once a month.
We started a Wed afternoon coffee get together. We meet have coffee and maybe a little lunch and enjoy each others company.
We seldom talk about memory loss unless there has been something important happen to one of the couples. We are just a group of friends getting together as any group would do.
This weekly meeting has been a godsend for all of us...we all now get out once a week, see our friends and enjoy their company. We are truly friends now. 
The group has grown as more couples have come into the "regular" support group. The feelings of everyone is that we get more from our weekly coffee's than from the regular meetings.
Some of the things that have come out of the coffee's:
We switch partners on occasion---I took 2 of the men with Alz Christmas shopping. We had a great time and their wives had Christmas presents.
Some of us have went away for a weekend together...we live about 2 hours from the ocean so it was a weekend walking on the beach. 
My wife has been taken by others to spend the day away from me....which after 2 years is I'm quite sure nice for her!!
This coffee group was started by us....with no input/help from the Alz Org except that we met at the 8 week course....Maybe you can start something like this also....
Wayne

Mimi S.
Posted: Sunday, March 18, 2012 6:22 PM
Joined: 11/29/2011
Posts: 7035


Iris,

There is usually a lot of publicity about the Forum but I do not remember anything being on line. The meeting for us Early Stagers has been informal the past two years. It's just a chance to meet others of us at the Forum who have dementia. 
The second day of the Forum has, n the past, been devoted mainly to prepare us to meet our Congressional Representatives and for the delegates from individual states to meet each other and make plans for within that state.
There has been information on current research. But most of the news from that is made at the Annual International Conference devoted to research. And the media covers that in depth. I think it's in the summer.
Wayne:
Your group is wonderful!!  I'm just beginning a monthly group where I live. It would be fantastic to see it grow as yours has!!!!!