Dementia: Just diagnosed and scared

Posted by cathy514 @cathy514, Apr 19, 2019

just diagnosed and scared

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I had no symptoms until I fell flat on my back leaving work, dr notes show I was disoriented but she thought was flexeral prescribed after fall she even offered to get me a ride home and changed to robaxin I had hip arthoscopy for torn labrum and si joint dysfunction still have pain in hip and back I continuously told my dr something was wrong I could be me she said anxiety and gave me zanex it did not help cognitive declined I asked for brain test may 2017 said white matter relative to age I asked to go to neurologist man neuro said anxiety propanal tremors were better but could not sleep had insomnia April to December went back to neuro same place woman tested refjuxes used rubber to tap body said anxiety and call behavior number on back of insurance card she was harsh and dismissive told did what man dr said neditate write read Jon Cabot ?read books she didn't care yelled go call number on card told my dr who said she is published and held high its anxiety see a psycolist went to mental health for anxiety had Zoloft didn't help for long gave clomazapan .50 it helped a little but still could not be me to,d doctors over and over something is wrong osteopath manipulation dr said get cognitive test got test had severe cognitive impairment and I would never work again and said good luck no offer of help I called next day as I needed to know why he said you need a better paychirist but you need a better your insurance for mental health gives you bottom of barrel paychirist I was devastated what d Io I do now? it wasn't till I went to the neck dr who said can fix pinched nerve and you have have a movement disorder I will refer you to movement dr and he saw pca on pet scan

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@cathy514

I had no symptoms until I fell flat on my back leaving work, dr notes show I was disoriented but she thought was flexeral prescribed after fall she even offered to get me a ride home and changed to robaxin I had hip arthoscopy for torn labrum and si joint dysfunction still have pain in hip and back I continuously told my dr something was wrong I could be me she said anxiety and gave me zanex it did not help cognitive declined I asked for brain test may 2017 said white matter relative to age I asked to go to neurologist man neuro said anxiety propanal tremors were better but could not sleep had insomnia April to December went back to neuro same place woman tested refjuxes used rubber to tap body said anxiety and call behavior number on back of insurance card she was harsh and dismissive told did what man dr said neditate write read Jon Cabot ?read books she didn't care yelled go call number on card told my dr who said she is published and held high its anxiety see a psycolist went to mental health for anxiety had Zoloft didn't help for long gave clomazapan .50 it helped a little but still could not be me to,d doctors over and over something is wrong osteopath manipulation dr said get cognitive test got test had severe cognitive impairment and I would never work again and said good luck no offer of help I called next day as I needed to know why he said you need a better paychirist but you need a better your insurance for mental health gives you bottom of barrel paychirist I was devastated what d Io I do now? it wasn't till I went to the neck dr who said can fix pinched nerve and you have have a movement disorder I will refer you to movement dr and he saw pca on pet scan

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also have horrible tinnitus

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I have very bad knee aches and terrible hand shakes fr wants to do do spinal tap ti see what kind pca I don't have money for that if its not going to make me better it's not worth am thinking donate my brain to science

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what do people without money when they need assisted living?

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@cathy514

what do people without money when they need assisted living?

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@cathy514 good morning. The following website has some good information. I would also encourage you to call the Medicare/Medicaid office in your area and ask for an appointment to discuss housing issues. https://www.after55.com/blog/will-medicaid-pay-assisted-living/. You can also go to a senior center in your area (oh, I’m just guessing that you’re a senior!). They have counselors who can help. Are you wanting assisted living or maybe help at home? Ask the counselors your questions. Will you let us know what you learn? Housing is a question many have.

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@cathy514

I do not know stage, can dress shower clean house but not as well as before pca l can do laundry take short walks pay bills but I mess up and waste checks trying I can dress myself shower makes me uncomfortable don't know why but I shower daily I watch tv but not a lot no visual problems I have had glasses since I was 12 I am nearsighted I cook with my daughter can make my own food I can drive but don't drive far or daily daughter rides with me lose my glasses a lot in the house no balance issues trouble with math andspelling

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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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@cathy514

I have very bad knee aches and terrible hand shakes fr wants to do do spinal tap ti see what kind pca I don't have money for that if its not going to make me better it's not worth am thinking donate my brain to science

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@cathy514
Hi,
My Mom had knee and leg pain and the Orthopedist told her to take Turmeric. It worked for her. Better than a narcotic. Some people prefer the liquid instead of the pills. When I took Glucosamine the liquid worked better for me.
Hope your feeling better,
Jake

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@jakedduck1

@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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Such an informative post @jakedduck1 ! I especially like the stages of decline—it could come in very handy someday. I really like your positive outlook on life especially when your’s has been so difficult. May I ask, where did the stages of decline come from?

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@becsbuddy

Such an informative post @jakedduck1 ! I especially like the stages of decline—it could come in very handy someday. I really like your positive outlook on life especially when your’s has been so difficult. May I ask, where did the stages of decline come from?

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@becsbuddy

@cathy514 I’m so sorry for what you’re going thru. I, too, often feel the same way. I used to be so active, doing everything, riding my bike, hiking, etc. Now, I can only do things in short spurts because I get so tired. And when I’m walking in a store, I’m sure that everyone thinks I’m drunk because I can’t walk straight. Oh well.
Have you explained to your neighbors what’s going on? They might feel better knowing because then they can help. And, please, don’t be embarrassed! We all do the best we can. ( sounds like I’m giving myself a pep talk! I need it!). Becky

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thank you, I did share with neighbors not much support but at lead they know

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@jakedduck1

@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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thank you so much, I am trying adjust I walk a lot and that helps I just need something to do I am so lonely

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@jakedduck1

@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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thank you , you are right I am blessed to he here and need to adjust to to this new life I am trying and wish I had a support group near me but I do so I walk a lot I know the diagnosis was life changing and brought about some depression that I need to get thru thank you for the post I think I am 1 or 2 dr didn't advise what stage

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