So now that I have had my 6 month getting to know Alzheimer's time, I have absorbed and learned a lot. Now I feel that I want to share my lessons learned. I have decided that I want to work with the local Alzheimer's Association and get a Early Onset Alzheimer's Disease Support Group up and running. I feel like I would have benefited so much from a peer group that had gone before in this rehabilitation after diagnosis. People like me, my age that would have been able to say ....... yes this is normal. It is OK, you will be OK. We are here for you, we care, we will carry you when the load is heavy.
When first diagnosed, I searched and searched to find resources. I was happy that even though I had no local help, I was able to find several wonderful and reputable web based forums, message boards, etc. Some that even had specific areas for the Early Onset Patient.
So now I figure, why not share my knowledge learned with others. Why not make someone else's life easier and give them comfort. Help them to acknowledge that they really do have a life left to live. Even though their Responsibility Police have left, they may be in danger. They may feel they are swimming alone just after eating and about to drown. But with help and when they are ready, they can start working on making their way through the rest of their life. They will learn they can go where they want to and do what they want to. Why should I not throw a life line out. I hope more people will take up the challenge to help others. It really does not hurt and will help give focus and purpose to our lives. I know I need the outside stimulation or I find I tend to stagnate and sit. So I need to get up and out.
Now that the Responsibility Police have left the building I can focus on what I want and need. I think that helping others in this way will also help me. I hope others will think that way also.
Remember, God Loves Us All.
Lynn
I am pleased to hear you are working with your local Alzheimer's to get a support group going for EOAD. Many areas do not have support groups, my area does not have one. The closest to me is 45 miles away. From the sounds of it you have everything undercontrol as to what you want to do and where you want to go. Thank you for using your knowledge to help others.
Thanks for your posting. We are meeting this week to make our plans. We have a RN that ran a group in Fl. that was like a introduction to Early Onset, what to expect, the legal things to address, etc. It ran for 8 weeks. It was more of an educational type of experience. At the end of the 8 weeks everyone went on their way. We, the Alz. rep, RN, and myself, will discuss what we would like to do with our group at this meeting. I would like more of a ongoing type of group but since everyone says that it is tough to get and keep a group going perhaps we will go this route first and then if there is interest go for the continuing meeting. We will see. I look at this as at least a beginning where there was nothing.
Remember, God Loves Us All.
Lynn
Hi Sandy. Just saw you post and thought maybe you could start a small support group of your own? Of course I am saying this without knowing any of your circumstamces. But maybe one of the national organizations could help you - or maybe even someone at the local hospital or a ursin home with and Alzhemer's unit could find some medical folks interested. I also think some churches out there have ministries for those with chronic illness - maybe that is an avenue. Just some ideas - we all need support and maybe you could be the answer to someone's else's need.
Thanks much and all the best, sue (moderator)