Dementia: Just diagnosed and scared

@cathy514
Hi Cathy,
Our lives aren’t always what we plan or want and I’ve always known there is ALWAYS someone worse off than us. When my Dad was paralyzed and in Phoenix for rehab I wondered how the people could cope with such devastating injuries. I thought how awful not to be able to walk until I saw a man with no legs, then I saw a man with no legs or arms. The man in the iron lung. The paralyzed blind man who was hit in the crosswalk by a drunk driver. Like the rest, he wasn’t angry or resentful. He was just very sad his seeing eye dog was killed in the accident. He told me about his life and accident and I started to cry. I was there to comfort him and he was comforting me. So many amazing people and heartwarming stories and lessons I learned. I don’t remember a lot about those days but I believe God made sure I remembered the most meaningful and important things. Maybe it was so I could better cope with my situation. I suppose what I’m trying to say in perhaps an awkward way is to appreciate what you have and are still able to do.
I’ve been in comas totaling 3-4 years, had over 13,000 seizures, lost every memory I ever had etc etc.
I’ve escaped death nearly a dozen times and had a lot of problems and so much I could be unhappy about, but there’s no fun in being unhappy so I learned to love and appreciate each day. A quote I like is,
“Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude.”
Pursue the positive Cathy, let any negativity go. Easy to say, I know but it’s well worth the effort.
Blessings,
Jake

If you interested in the stages here they are

Stage 1: No impairment
(everything is normal)

Stage 2: Very mild decline (something is wrong but it is not clear what; may include problems only recognized in hindsight)

Stage 3: Mild decline (everyone accepts something is wrong; it is not wrong all the time but there are particular things that someone cannot do or problems they experience)

Stage 4: Moderate decline (problems are now quite debilitating and help is required with a number of everyday activities)

Stage 5: Moderately severe decline (problems are now seriously debilitating and help is required with most everyday activities)

Stage 6: Severe decline (significant problems are experienced across a range of thinking and sensory abilities, and a more global dementia is evident)

Stage 7: Very severe decline (many basic abilities are lost, and care needs resemble those of individuals with end-stage typical Alzheimer’s disease)

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@cathy514
Hi Cathy,
Our lives aren’t always what we plan or want and I’ve always known there is ALWAYS someone worse off than us. When my Dad was paralyzed and in Phoenix for rehab I wondered how the people could cope with such devastating injuries. I thought how awful not to be able to walk until I saw a man with no legs, then I saw a man with no legs or arms. The man in the iron lung. The paralyzed blind man who was hit in the crosswalk by a drunk driver. Like the rest, he wasn’t angry or resentful. He was just very sad his seeing eye dog was killed in the accident. He told me about his life and accident and I started to cry. I was there to comfort him and he was comforting me. So many amazing people and heartwarming stories and lessons I learned. I don’t remember a lot about those days but I believe God made sure I remembered the most meaningful and important things. Maybe it was so I could better cope with my situation. I suppose what I’m trying to say in perhaps an awkward way is to appreciate what you have and are still able to do.
I’ve been in comas totaling 3-4 years, had over 13,000 seizures, lost every memory I ever had etc etc.
I’ve escaped death nearly a dozen times and had a lot of problems and so much I could be unhappy about, but there’s no fun in being unhappy so I learned to love and appreciate each day. A quote I like is,
“Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude.”
Pursue the positive Cathy, let any negativity go. Easy to say, I know but it’s well worth the effort.
Blessings,
Jake

If you interested in the stages here they are

Stage 1: No impairment
(everything is normal)

Stage 2: Very mild decline (something is wrong but it is not clear what; may include problems only recognized in hindsight)

Stage 3: Mild decline (everyone accepts something is wrong; it is not wrong all the time but there are particular things that someone cannot do or problems they experience)

Stage 4: Moderate decline (problems are now quite debilitating and help is required with a number of everyday activities)

Stage 5: Moderately severe decline (problems are now seriously debilitating and help is required with most everyday activities)

Stage 6: Severe decline (significant problems are experienced across a range of thinking and sensory abilities, and a more global dementia is evident)

Stage 7: Very severe decline (many basic abilities are lost, and care needs resemble those of individuals with end-stage typical Alzheimer’s disease)

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I was preliminarily given a diagnosis of pre Dementia by an OT. I had been to PT as I had been falling. PT found that I was okay motor skill-wise until anything cognitive was added ...so I went to OT. I then went to a neurologist who could not diagnose anything but was certain something was going on. He made a referral to get a Nero Phycology Test. I am lucky I can get into the University of Iowa Neurology on December 20th.

I am experiencing headaches (brain aches) when I get stressed from testing, my iPhone, working
on my computer, reading, etc. Today I got so frustrated on my iPhone because I went blank trying to do a simple task. It resulted in 2 hours of pain in my head.
Anyone else have this happen?

My apologies if I stole the OP thread, did not know where to go.

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