Trying to locate a specific group for a specific labeled population is not always easy.

You may want to define exactly what kind of a group you are asking for. The EOAD/FTD patients may want to meet separately from their caregivers/significant others and also vice versa.

There is much sharing and venting about feelings and specific occurences that caregivers and patient's may not wish to share with one another. I have found this to be so.

You do not have to wait for the Alz's Org sponsorship or even input. I was unable to find an evening support group anywhere in our city. Many caregivers still worked, some caregivers had to have their spouses come home in the evening to be able to get to a meeting.

So, I started my own group. I presented a well thought out written proposal to our Pastor at our church and he saw the value and brought the proposal to the board.

Of course I had done all my footwork beforehand and knew what room we would meet in, what night, what times and that I wanted an experienced social worker, LCSW, to lead the group and asked for funding. We met twice a month.

Lo and behold, we got funded! Wow. I advertised in the local paper, in the city newspaper, in the Chamber of Commerce Newsletter which goes to every home in the city and also with fliers at the senior centers as well as in the church newsletter/bulletins.

The first night we had 28 people. My goodness.

You do not need a social worker to start a group. Define who the group is for - patients or caregivers - I do not think you would have as deep a dialogue if the group were mixed. You can have two separate groups that meet the same night at the same time in different rooms or on different nights.

You can let one person be the coordinator, set some basic ground rules for speaking and respecting and then let the group be an open forum.

Once started, the group should take on it's own personality and energy.

Best of wishes.

Johanna,
You are always a beacon of light in a sometimes dark world! I hope many have followed your advice. Support groups are so important! They make people feel like they are not alone. I do want to remind people that they can go to their local Alz Assn and request EOAD support groups in their areas! The Alz Assn needs input as to how MANY people would like a EOAD support group.

Thanks again, Johanna!

Peace and Hope,

Hi. I'm Bruce, 48, and I was diagnosed with FTD or other dementia last year. No one wants to nail the diagnosis down yet, but they all know where its headed. I'm not able to take the medications normally prescribed because of other meds/conditions I have. I'm frustrated because no single doctor wants to take on my case. I agree, it is complicated, but I need someone who will follow through. Problem is that I've moved around due to my job (I was a pastor and then a speech pathologist). It's been rough for me and for my family.

Dear Bruce: "Diagnosis" or not (unless a PET Scan clearly identifies pathological changes that explain your deterioration), you need to know what we have done to help ourselves.

Check my letter to Dr. Marilyn Albert at: http://freepage.twoday.net/stories/3038870/ .....

Also website (access below sign-off). Just this morning, I commented to another group on a newly released Dutch study re benefits of melatonin supplementation.

Electric clocks, cell phones, cordless phones and esp. transformer boxes in or next to bedrooms -- electric meters, gas meters, air-purifiers, monitors and much more should not be close to persons' beds.

Our brains produce melatonin at night but low level electric field exposures interfere with the pineal gland's function.

Feel free to call or email with questions. Take care - Joanne

Dear BruceB
Hello and welcome. I'm sorry for what brings you here. You have found a great place to acquire a lot more information, vent feelings and frustrations, and talk with many wonderful, caring people.
Diagnosing Alz can be a very log, difficult process! I went to many doctors before I received my diagnosis. And,the doctors are still not 100% sure of my diagnosis. Please, hang in there. If you or your family need additional help, please call your local Alz Assn.
Remember, someone is always here to talk with and/or assist you.

Peace and Hope,

Dear Angel, does your husbund have agression and is so what other meds have they put him on? We are also new to finding out which ones help him.

How do I send a specific person an email?

Angelb,
You need their e-mail address. Try asking for it!

Good Luck

Peace and Hope,

Hi Lisa, I am Sue from the Monroe area. I have heard nice things about you from different people from the state Alz. association. Would you please email me your email address so I could talk with you. My email is sue71435@hotmail.com. Thanks. Looking forward to meeting you soon.

sewinmom,
Thank you for your nice comments. I will e-mail you today!
Can't wait to speak with you!

Peace and Hope,

Hi Lisa,

I only just found this forum today. It is fabulous. So many folks "just like me". EOAD. A little about me. I am now 57 and have had memory complaints since about 2000. I even saw a neurologist in 2002 that said I was "depressed" and he put me on Effexor. When I got to feeling better I stopped it on my own. Over the years my medical record shows multiple complaints about memory and not being able to find words. Confusion and concentration problems. Once I went and asked the doctor could I possibly have adult attention deficit disorder. And of course the list goes on. I started a new job a little over 2 years ago. I had been in my last job 12 years so even though I had problems the job duties were old tasks. The new job was the beginning of the end. I could not learn new tasks or if I learned them one day they were gone the next. It was like starting over every day. If I had a series of 12 dollar amounts that I needed to add up I could add it up on the calculator 5 different times and get 5 different totals. I would have face to face conversations in the AM with employees that I supervised and had no recollection with them in the afternoon. I worked in a dental office and I would have phone conversations with patients and if the patient called back 2 hours later to talk with me I had no clue who they were. Conversations with the doctors, you guessed it. No Idea what they would be talking about later that day or week. Needless to say I had severe job issues. Was placed under performance warning. It was horrible. I had been talking with my int medicine doctor about my issues and finally when I went to my doctor and fell apart telling her about forgetting to get on an airplane to go to Houston for a mandatory budget meeting with the CFO of our corporate dental practice management group she realized this was not ordinary stress as she kept saying. When the lady called me that was waiting at the Houston Airport to pick me up....she asked me where I was. I told her I had just pulled up to my work and asked why. I actually did not even know who she was at the time. (I know her well as a co-worker) I did not even know what meeting she was talking about. I totally had no memory of the scheduled meeting. And believe me this was a huge deal for our company.

Any way, I was officially diagnosed Feb this year and quit work March 8. I immediately started looking for support groups even before the final offical diagnosis. Once diagnosed I called the Alz Association in San Antonio. They had a list of support groups throughout the city at churchs etc. Lots of different sponsors. I asked for one for early onset patients. Yes they had ONE. Hurray! I would have my peer group. Some people to relate to and ask questions of. So when is it. First Thursday each month from Noon - 1:00PM. in the Medical Center. Hummm. Not to convenient, as I was still working at that time. Normally, no way I could make it. But I figured I might be able to manage it. After all, it was only one day a month. Then I asked, who facilitates it. I figured must be a social worker since it was held at the Alz Assoc headquarters. The lady I was speaking to said she herself ran it, or who ever was in the office that day. Hummmm. OK. How many people were there last month. Now here is the kicker. Well, she said there was one man there and she did not know if he was going to come back or not. She would call him if I wanted her to. Well, I was so shocked that this was all there was I just said no, I'll see if I can find another group. I'll call back. I did check into some other groups and found them to be for caregivers. I even attended one that the lady from the Alz Assoc suggested. There was the social worker facilitor and three elderly caregivers whose LO had already passed away. One gentleman was actually the retired pastor with the church whose wife had passed and God Bless Him, he was trying so hard. But you know what, I did not need to hear how he put her in the home and she did not like the diapers the nursing home used so he used to buy her Depends and bring them to the home. I was still working at the time and cried the entire next day at the office.

I would love nothing more than to have a EOAD Support Group. I know it is needed. I even thought of contacting our Lifestyle Editor at the newspaper and explain my plight. Offer myself up as "Not the Normal Face of Alzheimer's".

Don't know if this is the kind of info you wanted but it is my story. Thanks for listening.

Lynn

Dear Lynn,
Hello and welcome. Seems you've posted on several categories. Thank you so much for sharing your story. I'm sorry you've had so much grief. Please, re-contact your local AD and request an EOAD support group. I think each branch of the AD has to show a need to Corporate AD/Chicago to really start a group. Good Luck and please, keep in touch!

Peace and Hope,

Hi Lisa,

Just an update. I did recontact the Alz Assoc. and am meeting with them to hopefully restablish the Early Onset Group. Technically they do have a date and time each month for a group but no one comes. You have to be pre-approved for the group as it is not an open group. Perhaps that is what stops people from coming. She seemed to be excited at the prospect of having someone ready and willing to help. Just like most agencies there is a lot to do and few people to do the work. What better project for me to work on. So many early onset patients may not be able to hold down a regular job but still have many wonderful assets and abilities to share with others. Once again, what helps ourselves, helps others.

She did say they are looking for a new facilitator for the group at this time. She told me that they used to have an active group years ago, "before her time" but she did not know why they stopped meeting. She seemed to be at a loss on the subject. She said that normally if someone calls they will simply meet one on one with the individual, give them the materials, and answer any questions they might have. Currently the meeting is officially set for 2nd Monday each month at noon. I personally think that if the Alz patient is stilll working they can't come. If not working, some may have driving issues but the spouse is working so they may not have transportation. Plus what does the spouse do while this meeting is in progress? Does this mean there should be a companion meeting for spouses at the same time?

I told her how disappointed I had been when I had called in several months ago in my quest for a peer group to share with and learn from. I emphasized that there was a need and that I was willing to help even to the point of contacting the newspaper and asking for their help in showing this "other face of Alzheimer's, the young face". There is a lot of info and TV ads out at this time but it always shows elderly people. What people normally associate with dementia and Alzheimer's. She was most receptive and even said she would be willing to change the day and time of the meeting.

What I need now is everyones help. What is working for other groups? What helped you to get started? What do you talk about at meetings? I don't want a political group. I want a group that is personally supportive. I want to have some suggestions to offer these people when I meet with them. Please, any one ~ everyone ~ I need your help to get this group restarted. Please send your suggestions. How did you get your groups started. I think we have a blank canvas here and can paint the picture any way we want. The association seems to want the picture completed. Any and all help welcomed! Thanks so much.

Lynn

Lynn, good luck with getting your group going. Yes, indivuals DO have to go through their Chapters to be apart of Support Groups, it is kind of a safety screening issue thing as well as to make sure the person actually meets the criteria.

When we had our groups we talked about everthing from how our morning was to what our wishes were. We were there to help each other and not feel sorry for ourselves. We laughed alot, cried alittle sometimes when our spirits were down. Talked about the things we miss in life, reminsced about our past and lived in the moment. Hope this helps...............

Dear Lynn,
I am so excited for you and all the others in your area! An EOAD group for patients and another for caregivers would be fantastic! Our 1st local EOAD patient support group is at the end of this month! I hope to discuss and share all types of information, feelings, emotions and what works for each person. I am hoping, also, to find people MY age to meet with outside the group for coffee or lunch etc.
I think a lot of (EOAD) people want to speak with and share with others like ourselves. People who are in the same stages of life.

Thanks so much for writing.

I hope lots of people read this and start establishing EOAD groups in their areas!

Keep in touch

Peace and Hope,

Thanks for the encouranging words Lisa. I am excited. I would love to have a social group where I don't feel like people are watching me for "signs". Even the people I love and that love me have a tendency to "protect" me. We laugh and enjoy our time together but it would just be nice to have my "Special Friends".

I will let you know how the meeting with the Alz Assoc person goes. I would really appreciat it if you could please share your agenda and meeting results also. If anyone else can suggest anything I would so appreciate it. I was thinking even of guest speakers, like elder attorney, therapist working with EOAD patient's, etc. I am even willing to do the leg work. I have worked with volunteer organiztions before and have no problem making the calls.

I think often that many people think once you are diagnosed with Alzheimer's you have lost all of your abilities. Not so of course, but I think we have to always continue to prove ourselves. Keeping busy keeps us "Quick on our Feet". Playing those mind games on the computer is good of course but there is a step us also. I liken it to the difference between riding a bicycle down the road and enjoying the nature around you and appreciating your neighbors yard or Riding a stationary bike at the gym. Both activities are doing the job of getting the exercise but you sure don't get the same sence of personal satisfaction and enjoyment out of it. I don't know if that makes sense but I want to feel that I am still a productive member of society. Not just spinning my wheels getting my exercise but standing still.

Remember God Loves Us All,

Lynn

Hi Lynn,
It's great to hear you're doing well and feeling productive. I know exactly what you mean. I have EOAD and my Mom (77 years old) had AD. I live next door to she and my Dad (86 years old), which can be very trying at times. I'm so glad that you have the time and energy to devote to your EOAD group!
Please, keep me informed.

Peace and Hope,