I've had ALZ for several years. I'm tired of the misinformation

professorsnow

I'm new to this organization and this forum. But I'm not new to Alzheimer's. I have been struggling for about 4 years now and looking back I was struggling before that with a variety of things. Speech is off, balance is off, sometimes I can't slow my brain down and sometimes I can't get it going, understanding people when they speak is off, I sundown terribly, I am very agitated, I confabulate, math is becoming more and more periodically difficult, etc.

I am just amazed that there are so many contradictions in the understanding of this disease and how to treat it. One person says this and another person says the opposite. One doctor says this and the other doctor says the opposite.. I just read in one of the discussions in this very forum that apparently people with dementia don't know they have dementia. Well that's crap. I am very aware of my problem. And it's getting worse. So I don't know who told you that, but it's false.

I have many good stories about things that doctors and psychiatrists and psychologists have said. Some of them are just completely off the map. As I sit and listen to books and podcast, I hear all kinds of differing views and opinions.. it would just seem that for as long as this disease has been around and for as much as it has been studied, that there would be a little bit more uniform understanding.

This is very frustrating.

I had to retire 3 years ago because of this. I now work my gentleman farm here and there when I have the energy and the wit.

Thanks for letting me complain. Overall I'm doing a good job of finding positive things everyday. It's hard some days, but generally speaking I can.

David1946

I was diagnosed last November and I know that I am getting worse little by little. I have trouble remembering my home phone and my cell phone so much that my wife wrote them on a sticker and put them in my phone.I also have trouble trying to find words when I am talking my math is going down hill.

dlubritz

hi Professor,

• I am Deborah, retired RN. I was diagnosed in2021. I started having problems with mobility, balance has been an issue for many years, anxiety, now irritability and,depression.
• I don’t drive anymore basically because of all those symptoms.
  I moved to a independent senior living facility two or so years ago because::
• I am taking this journey alone.and I need to b with people/socialization. I want to stay in my apartment for as LONG as I can.
• I have learned so much by the reading the different conversations of peopl on these sites but not this one. The one I am speaking of is on Facebook by caretakers. People tell their story about the person they are caring for.
• They ask for opinions, medication, physical therapy, exercise, specialist,
• making the diagnosis, what tests, MRI.
• All kinds of questions. —-dealing with sundowners, irritable, how to keep your home safe. So many ideas, advice,family interactions,
  I read most all I could. I have found
• That it is straight down the book by MAJORITY. Now, you do have a few …
• 
  I am on ARICEPT. This drug has helped me with so much. It took awhile. My MD is an Alzheimer’s Disease Specialist.
• It took several months to see him
• He has been very kind.
• I read constantly, brain games, walk with my dogs, good diet, and finances in order, will , and all the other info for the stuff for hospital-insurance, and
• Nursing home,assisted living, etc.
  you will learn so much from this FACEBOOK group. I just started putting different words in til I found this particular group. I can’t remember if it is through the Foundation or the Association. I will find out!!
• 
  I hope you all goes well for you.

Iris L.

Welcome professorsnow. Have you received a diagnosis of Alzheimer's Disease or another dementia? Yes, the diagnostic process is long, complicated and confusing. My own journey began in 1986, but it was only in 2009 that I received a formal diagnosis of cognitive impairment not otherwise specified. In between those years and even afterwards I have received many diagnoses. This is not unusual.

Basically the diagnosis of Alzheimer's Disease is a rule-out diagnosis, after all possible medical causes of memory loss have been searched for and ruled out. I spent my first few years on this board like you, complaining about the poor treatment that I had received from professionals and from close friends. But I got over it. Complaining is not conducive to my well-being.

Approximately seventy percent of PWDs (persons with dementia) have anosognosia. They may be aware to some degree that their memory is slipping, but they are not aware of the executive function impairments, that they are having hallucinations and delusions, or that they have a terminal illness. Obviously, this means that approximately thirty percent of PWDs are aware of having dementia and its implications.

I do not have Alzheimer's Disease. After a few years my neurologist determined this via an Amyvid PET scan. I continue to participate to help new members and to learn for myself strategies and tactics that can help me in my own care. I desire to be proactive, not reactive.

I hope you can join us. I believe peer support is most important. My peers on these boards brought me out of a deep depression, when I thought I had Alzheimer's Disease.

Iris

Iris L.

Deborah, since you have trouble with your balance, were you tested for normal pressure hydrocephalus?

Iris

dlubritz

iris, This is Deborah. Thank you for always responding to persons on this board. I learn so much from YOU. Your comments above gave me more knowledge!! WOW!!

Thank you!

As for your question, I don’t remember. I know they did a spinal tap. I am sure he checked the hydrocephalus normal pressure. Now, he first thought I had Parkinson’s DISEASE. I don’t but I had to go thru many different tests for that.

I am certainly going to ask!! I fell on concrete—lost my balance and I was hurrying —lost seven teeth—-front!!

Therefore I walk with a STICK now.

Thank you for your care.

professorsnow

https://alzconnected.org/discussion/comment/211713#Comment_211713

Yes. I have received diagnosis.

A Maureen Kirkby

> @professorsnow said:
> I'm new to this organization and this forum. But I'm not new to Alzheimer's. I have been struggling for about 4 years now and looking back I was struggling before that with a variety of things. Speech is off, balance is off, sometimes I can't slow my brain down and sometimes I can't get it going, understanding people when they speak is off, I sundown terribly, I am very agitated, I confabulate, math is becoming more and more periodically difficult, etc.
> I am just amazed that there are so many contradictions in the understanding of this disease and how to treat it. One person says this and another person says the opposite. One doctor says this and the other doctor says the opposite.. I just read in one of the discussions in this very forum that apparently people with dementia don't know they have dementia. Well that's crap. I am very aware of my problem. And it's getting worse. So I don't know who told you that, but it's false.
> I have many good stories about things that doctors and psychiatrists and psychologists have said. Some of them are just completely off the map. As I sit and listen to books and podcast, I hear all kinds of differing views and opinions.. it would just seem that for as long as this disease has been around and for as much as it has been studied, that there would be a little bit more uniform understanding.
> This is very frustrating.
> I had to retire 3 years ago because of this. I now work my gentleman farm here and there when I have the energy and the wit.
> Thanks for letting me complain. Overall I'm doing a good job of finding positive things everyday. It's hard some days, but generally speaking I can.

Iris L.

Deborah, I'm so sorry that you had a bad fall! And to lose seven teeth, what a disaster! Falls are serious! Especially bad for people who live alone, because we don't have anyone to help us out. I suggest that ask your doctor for a balance evaluation, which is done by the physical therapy department. They will examine your gait and balance and give you exercises to improve your balance. They can also teach you how to get yourself up from a fall, this is called fall recovery.

You mentioned above that you have had balance and mobility issues for many years. In addition to being signs of Parkinson's Disease, they are signs of normal pressure hydrocephalus. The difference is that NPH can be managed by a shunt to drain cerebral-spinal fluid. A small number of members have had a LO with NPH. There was a recent post on the General Caregivers board about NPH. I think it is important for doctors to document in your medical records that you have been tested for NPH and that you don't have it.

Early in my recent journey, a geriatrician declared, "You have to accept that you have dementia!" This declaration threw me into a deep depression. BTW, this is no way to relay a devastating diagnosis. What got me out of my deep depression was communicating with the members here, both patients and caregivers, and learning from them. I came to the decision that, if I have dementia, I'm not going out like a victim! This means that I will do whatever I needed to do for myself, that I will make my own decisions for my life, and that I will not become a burden to my family. I will do whatever it takes to maintain my independence. It's still hard, even for a person with cognitive impairment, but I will not give up! It's too important!

Iris

Iris L.

Welcome Maureen Kirby. Please feel free to introduce yourself. You are among friends here. Do you have a diagnosis or do you have symptoms?

Iris

Iris L.

Deborah, you and many new members mention being anxious. Anxiety was a big problem for me. I had free-flowing anxiety. When I was anxious, my mind went blank. I could not remember anything or do anything. I found out the problem from one of our emeritus members. Alan in Colorado, who was himself a psychologist with dementia, warned us that stress and anxiety will reduce our cognition by HALF!

This was a wake-up call to me. I resolved to do everything I could to reduce my stress. I worked reactively and proactively. I learned to do deep breathing in the midst of an anxiety spell. Deep breathing sounds simple, but it works. I already knew about progressive muscle relaxation, but I refreshed my memory of it.

Proactively, I learned to avoid stressful situations and stress-provoking people. I mentioned that I was deeply unhappy with how professionals and my close friends had treated me. I had to let that go. I let go of watching the news and disturbing TV shows. I even had to become discerning about reading threads on these message boards, because some of the posts were really disturbing and painful to me.

The main idea was to avoid or limit stress and anxiety. My tactics have made a difference. I am not saying that I never get stressed or anxious. But now I recognize a potential anxiety-provoking event and I know what to do if I do become stressed. I can tell the difference in my thinking and in my ability to complete tasks.

Iris

jackiputnam

This is very helpful for me! Thanks, Iris

michflo34

https://alzconnected.org/discussion/69447/ive-had-alz-for-several-years-im-tired-of-the-misinformation

Bonjour ! jesuis comme vous malade depuis 4 ans ! la désinformation je l'ai eu même par un medecin generaliste qui me disait ; vous n'tes pas du tout malade ALZHEIMER c'esqt moi qui vous le dis !!! alors que le médecin NEUROLOGUE qui me suit à l'hopital, me l'a confirmé et ma même fait une attestaion disant que j'étais atteint de la maldie depuis 2019 ! et certifié par une ponction lombaire! alors personnellement je n'écoute plus les personnes qui soi disant en connaisse beaucoup sur la maladie alors qu'ils sont NULS !!!

alors écoutez votre médecin NEUROLOGUE, votre psychologue et votre orthophoniste, si vous avez tout cela comme moi ! éviter de mettre en contact avec les "moi je sais!!!"

bon courage