quote:

Being me, here, is equivalent to having a life sentence for an indeterminate number of years, during which time I have an incurable disease which is just going to get worse until I finally die from it or something related to it.

quote:

You are free to use any work of mine that you choose. Consistent with the aphorism:

Whatever joy there is in this world
All comes from desiring others to be happy.
And whatever suffering there is in this world
All comes from desiring myself to be happy.
SHANTIDEVA

I am more than pleased to allow anyone to use anything I have put out if it is of help to anyone. I have this disease and decided when diagnosed if I was to have this crap I was going to make it worth something. Sharing and using it to help others is what gives meaning to my having to deal with this terrible disease.

quote:

Originally posted by Mike Donohue:
6/4/2009

I AM TIRED OF HEARING, “YOU ARE SO SHARP, YOU CAN’T HAVE IT!”

I am sharp because I am in the Early Stage of Alzheimer’s Disease (AD)! That’s the way we are. This is normal for Early Stage. When you say “You can’t have it” Though you mean well, you feel you are re-assuring us we don’t come off as bad as People with AD are supposed to look, you have to know what a put down it is.

The common misperception about people with AD is this: If you have AD you must be drooling, standing in the corner unable to find you directions out of it. Because this biased perception of what we are we are often outcasts or patronized. Please help us overcome the public stereotype of what we are supposed to be! Certainly, those of is in the Early Stage of this disease do not show it. We come off as being very normal, able to think, do a lot of remembering, find our directions, carry on a conversation and do everything else we could before we got it.

The only change is this: We have some limitations. Because of these the Health Care Folks can tell us, yes we have it, yes it will get worse, yes it will ultimately cause you to die. You can hold it off from becoming worse if you Take Mediation, Eat Right, Exercise Daily and engage in Social, Creative and Intellectually Stimulating Activity, this will prolong your stay in the Early Stage.

The put down of telling us we can’t have it is this:

• I have gone through the heart wrench of being diagnosed with it. • I have had to deal with the absolute shift in who and what I am because of it.

• I have had to accept the tragedy of what it does now and will in the future visit on my family and loved ones.

• I have had to learn to live with the ultimatum this diagnosis serves. “You have a terminal disease, one in which you mind goes by degrees followed by your body inching its way to death that is the absolute end result.

• I will suffer this emasculation: While I have it I will need to depend on others more and more, I cannot now do everything else without the help of a caregiver, which will become more and more of a need as I progress to conscious oblivion, helplessness and death.

This is no exaggeration! Thank God I come off as good as I do. I still have a quality of life that I cherish and want to prolong.

To do this I need you to:

• Love me, love me a lot I am suffering and I need your support! Accept me as I am. Trust me, I do have this awful disease, I do not want it but am trying to make the best of it. Please don’t make it harder for me by discounting it or denying it!

• Spend time with me. I love social time, activity and the camaraderie of friends and family. I love to do things. I will be a little different, particularly as time goes by. I try to work around it, overlook it when I slip. Above all make a place for me in your lives. I need it more than I ever did.

• Tell everyone you know I have this disease and I do pretty doggone well with it. We suffer a stigma because of our disease. We are with it, with you and want to do things, like volunteer, be in organizations, and participate in everything as a normal person. We do not want to be left on the shelf or put into a warehouse as too often a day care, assisted living or nursing home has become to be for us.

With your acceptance we are more likely to get the kind of help we need, like Eating Right, Daily Exercise and having available Social, Creative and Intellectually Stimulating Activity, both organized and self provided, which along with the medication we have available will prolong us in the Early Stage.

If this can be made to happen this improves our quality of life that has been so damaged by our diagnosis. It truly assists our families and care givers because we can continue helping ourselves longer. It greatly benefits the community and the country because it will be longer before the expense of outside help or institutionalization is needed.

1. You obviously don't need help the result of which you obviously don't get it.

2. There are so many programs that can help us stay in Early Stage if we get them. The Mantra, "Take your medication, eat right, participate in social, creative, intellectually stimulating activities" really helps our quality of life and helps us stay in Early Stage longer. Looking like we don't need help defeats any possibility of having organized the activity side of what we need.

3. We in the Early Stage fall through the cracks when it comes to getting any kind of public attention. Even though we do not show our impediments we still have them. Having to deal with them, more than not, contributes to accelerating them. Loneliness breeds more loneliness. Boredom lets us slip too readily into mid stage. I could go on.

4. We will get there soon enough! The more we can arrest the process by doing something about it the better we will be off.