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After teaching for 30 years, I began having mini-strokes, in addition to diabetes and a number of other problems. Suddenly, my recall for names left me. Then I began having trouble concentrating. Spelling can be difficult... Time doesn't quite mean the same to me anymore...Later, I could not remember what to do when asked to complete a direction such as "Go into the house and get me a screwdriver."...Cooking and housekeeping have become difficult...
I have finally gotten qualified for social security disability. Early Onset Dementia has hit me hard. There are huge blocks of things I don't remember. I try to see the comedy in it (the positive, that is)...like I can watch the same TV problem any number of times and not be bored! I was tested by a couple of different psychologists who found that my IQ has lowered considerably. As one told me, it was lucky that my IQ started out so high or I'd be looking at some serious loss right now. Needless to say, I am in the mid normal range, which frustrates me because I have always been so sharp in the past. Not any more. I guess it's good that I can recognize my losses...once I can't do that anymore, life as I once knew it (and as my family knew me) will be over.
I would appreciate any helpful suggestions and information.
LJ -
I am so sorry about your diagnosis, and am sure that everything that you are experiencing is very difficult. I also commend you for how you are trying to keep a positive attitude.
My firsthand experience with dementia is pretty limited at this point to my 83-year-old mom's issues (and those of her generation), but I hope in the future to start talking to people like you so that I can share some of the stories (including the challenges faced and solutions that have worked) of those who are living with early onset dementia.
Until then, I hope you stay involved in this web community. Somebody who is facing the same issues (as a caregiver to her husband) is Teri Bailey who writes regularly about what they are facing. You may want to post a comment to her sharepost (or send her an e-mail through the HealthCentral e-mail system. Teri's information is located at: http://www.healthcentral.com/alzheimers/c/3712/profiles/
Please take care!
Dorian
Hi my Name is Ginger Kelley
I have been diagnosed quite a while ago, with the onset of "Alzheimers Disease". I have personally found, that there are hundreds of website helping the caregivers, but, none for the patients themselves. I am on Aricept and Namenda. I am perfectly fine. I was diagnosed in 2002, and I am fine. Would like to correspond with other Alz. patients, even people that are a little further into the disease. maybe they just want to chat with someone. Maybe they feel lonely. If they have the ability to correspond with the computer, I would be happy to chat with them. Sometimes I feel alone, in my mind, people don't get it. I just turned 64 years old, and have been having difficulty since 1998, when I had a small stroke. I do have memory problems, but, like my friends all say, they have them also!! They don't understand the difference, between losing your car keys on a daily basis, and putting a gallon of milk on the next door neighbors lawn. not that I have done that, but, if I could remember, I could tell you some really funny ones. I am an airhead to begin with!!! Believe it or not, I use to hold a big job, now I am luck if I can get out of Bed! hope someone responds Thanks Ginger
Hi, Victoria,
Welcome to this community! We're glad to have you.
I hope you'll contact Leah, who also was diagnosed with dementia at an early age and who writes regularly for this website. Here's the link to one of her shareposts:
http://www.healthcentral.com/alzheimers/c/6509/28613/dementia-cheese/?ic=4027
Take care and stay in touch!
Dorian
Hi Ginger,
My name is Lynn and I was just diagnosed with early onset alz in March 2008. I am only 57 and have actually had problems for a long time. Pretty heavy, scary stuff to get that diagnosis. I also have been searching for others.. "living in the disease". Caregivers know the disease, have lived with the disease, but have not walked in our shoes. I can't figure if it is because people are embarrassed about the disease. Locally here in the San Antonio, Texas area there are many Alz Support groups and even one for the early onset patient. Problem is that when I called the Alz Society and asked they said only one person had attended the previous month and they did not know if he was going to come back. They said they would be happy to call and ask if he was going to come back. It just seemed like it was too much trouble for them.
I have had to quit working due to my disease. The stress and 70 miles of travel a day was more than I could handle. In retrospect, I should have quit a year earlier as I was truly doing a disservice to my co-workers. I am on Aricept also. I have a double whammy with Fibromyalgia.
Anyway. I am new these boards but would also like to communicate with other Alzheimer's patients.
Lynn ~ spotted dog
Hi, Lynn,
I am so sorry about your diagnosis. Please know that you are very welcome to contribute to this site. One of this site's experts, Leah, also is experiencing dementia at an early age. You may want to read her posts and contact her. One of her most recent posts is located at: http://www.healthcentral.com/alzheimers/c/6509/28613/dementia-cheese
I do know that there are others who are facing the same thing as you are in the San Antonio area (a friend of mine who faces early onset dementia and his wife were long-time residents of San Antonio, but moved to Austin to be closer to their adult children). You may want to try to contact some adult day care services to see if they may be able to put you in contact with others. Also, your church may have some knowledge of others who face a similar battle as you.
Take care and stay in touch!
Dorian
Hello,
I have a family friend who has been diagnosed with Early Onset Dementia a couple of years back. He does not qualify for disability due to electing out of paying Social Security because as a pastor, he was considered self-employed and could do so. He is in his late 50's and does not appear to qualify for any govement because of opting out of paying Social Security. Does anyone know if the Federal Government or the State of California have any other funding support for my friend and his family? Your help is very much appreciated!
Did he try Medicaid? In Calif. it is called Medical. If he is poor and has no properties, then he can try to apply for it. Medicaid/Medical will help paying for a nursing home or assisted living for dementia if the home accepts Medicaid. If he has Medicare A/B, then it could cover 3 to 5 months of nursing home provided that he is very sick when he enters the home.
Hope this helps,
Nina
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Yes, I totally agree. This nightmare is happening to our families across our beautiful country and across all cultures.I have a brother in his 50's who is diagnosed. It is really scared that it is in our genes.
Thanks for sharing your very important message. It must be shared so one can get assistance!