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Today is a bad day
julielarson
Posted: Monday, February 22, 2016 3:28 PM
Joined: 9/30/2015
Posts: 1155


It just hit me this morning that there are some new things I am dealing with as far as whatever this is I have. It seems that  I struggle with the steps to cook dinner these days, I have to remind myself of what comes next in meal preparation. I have to do things in steps otherwise I forget where I am and keep track. When cooking I have to watch what I am cooking otherwise I forget I am cooking. I contacted my Neurologist about this because it scared me to think about all alone in my head. It used to just be names of things I would forget, but now it is a whole lot more. She told me to come here and I forgot I was even a member here until I went to sign up again and it reminded me that I was. I could use some friends who understand where I am coming from.. Thanks
Mimi S.
Posted: Tuesday, February 23, 2016 9:42 AM
Joined: 11/29/2011
Posts: 7036


Welcome Julie,

Do you have a copy of your neuro-psych report. Did it give strengths and weaknesses?  Check out Executive function.  First time I took the test I flunked that one big time.

 I have had to simplify my cooking a great deal.  Using a recipe can result in my forgetting an ingredient, even though I've checked and rechecked. 

It's hard, but try to focus on what you can still do.  Do stay with us.

Do call our help line: 1-800-272-3900. Ask if there is a local support group for you or some Chapters have a monthly call in support group.
julielarson
Posted: Tuesday, February 23, 2016 9:53 AM
Joined: 9/30/2015
Posts: 1155


Mimi, I plan on staying here and asking questions... Thanks
Edj
Posted: Sunday, June 5, 2016 11:55 AM
Joined: 6/2/2016
Posts: 1


I understand, I spend hours everyday looking for things I have lost, my wife tries to make things easier for me to cook, writes down what to do, we use post it notes for reminders or a timer that makes a sound when you are cooking, so you dont forget you are cooking, like I do sometimes.  my life has become one confusion after another everyday.  some days I feel ok, but  those are getting few and far between.  unless you have this, I dont think people understand this,  if you are having a really bad day, try to think tommorow may be a better day. I am having tremors really bad right now, but they may not be bad later today or tommorw.  just knowing I am not the only one having these problems helps me feel better.  I get very angry, depressed and frustrated, because I can not remember things, the aricept has helped me some, but it has not helped enough, but if I did not have it, I am not sure I would be able to function at all.
Mimi S.
Posted: Sunday, June 5, 2016 12:10 PM
Joined: 11/29/2011
Posts: 7036


We just do the best we can, one day at a time.

A key word is simplify. Simplify the number of tasks you try to do in a day.

Simplify meals. I can no longer follow new recipes. That's the way it is.  

When I make something I have to review ingredients several times. I have missed an ingredient even after two checks.

And yes, when we err, we get mad at ourselves. Don't let it linger. I shrug my shoulders and put the blame on the disease.


Iris L.
Posted: Sunday, June 5, 2016 2:54 PM
Joined: 12/15/2011
Posts: 16107


Welcome, Ed.  Yes, we understand, because we are dealing with the same issues.  Best Practices and medications have helped me a great deal.  Also, I make accommodations.  I don't do any major cooking.  I do use my timer and other reminders.  Simplification is vital!  Make your life easier for yourself.  Set up routines.  Use your calendar.  Use your post-it notes.


You must learn to deal with stress and anxiety.  One of our emeritus members, Alan in Colorado, was himself a psychologist.  He warned us that stress and anxiety will reduce our cognition by HALF!  This was a wake-up call to me.  I am constantly seeking ways to relieve stress and anxiety, because it is all around me.


People are afraid of Alzheimer's disease, because they don't know what to do.  There is hope.  We hope to function better and to prolong the early stages.  This is why we do Best Practices.  Keep coming here for encouragement from your fellow members, Ed.


Iris L.


wwkayaker
Posted: Tuesday, June 21, 2016 4:47 PM
Joined: 3/4/2014
Posts: 32


Cooking is a complicated task that I avoid now as there have been too many incidents when I've forgotten food cooking on the stove.  I do use the microwave but I have screwed that up on occasion and yes microwaves can also catch fire especially if you forget to put in the food and/or input incorrect time.  When my mom went through this we unplugged her stove and removed the toaster oven to keep her safe.  We thought that would do it but she tried to start a fire in the fireplace so matches had to go as well (she was on oxygen 24/7).
Gig Harbor
Posted: Wednesday, June 22, 2016 10:05 AM
Joined: 3/10/2016
Posts: 573


My husband started Aricept in January and his hallucinations stopped. He started Namenda in April and he has improved in mental alertness and cognition and seems more like his old self. His shorterm memory is still bad but his decision making skills are normal. Wonder how long this will last. Sees his neurologist today so will ask but will likely hear that it is hard to tell.
BlueSkies
Posted: Thursday, June 30, 2016 8:47 PM
Joined: 2/24/2016
Posts: 1096


Julie, I know how you feel.  I am also struggling along with "whatever it is" I have also.  It's good to find a place where others understand what you are going through.  I feel alone a lot in this journey too and that's why I am here.
alz+
Posted: Thursday, June 30, 2016 9:44 PM
Joined: 9/12/2013
Posts: 3527


"whatever it is..."

that is the kicker. One of the kickers.

I have been trying to post info today and all my replies come out blank.

thinking of you all, love you.


Iris L.
Posted: Friday, July 1, 2016 12:19 AM
Joined: 12/15/2011
Posts: 16107


Alz+, love your dog!  


She's a hugger!  


Great for you both!


Iris L.


Iris L.
Posted: Friday, July 1, 2016 12:29 AM
Joined: 12/15/2011
Posts: 16107


Welcome, Blue Skies.  I was treated with the same nonchalant attitude until my extensive six hour neurcognitive testing report from the neuropsychologist showed that I had significant cognitive impairment.  


I suggest that you get a referral to a neuropsychologist for extensive neurocognitive testing.  You may need to go to an Alzheimer's Disease Research Center or to a university memory clinic.  You can call you local chapter and ask to speak with a Care Consultant for suggestions on where to go in your locality.


You can also read the book "The Alzheimer's Action Plan" by Doraiswamy and Gwyther.  This book will give you information on the diagnostic process.  You can probably check it out from your local library.  Also, read the section on diagnosis on alz.org.


What has helped me is getting on medications, Exelon patch in my case, early, and also following Best Practices.  You need help.  Are you still working?


Iris L.


Gig Harbor
Posted: Friday, July 1, 2016 2:02 PM
Joined: 3/10/2016
Posts: 573


Blue skies,

That must be so frustrating for you. Are you on Aricept and Namenda? My husband's neurologist says that he wished family doctors would start patients on these drugs if there are obvious memory issues, while waiting for neuro appointments. Apparently if you don't have AD the drugs won't hurt you and if you do have AD they might possibly buy you some more "normal" time. You might ask your neurologist to let you at least try the drugs to see if they help. Good luck.


Iris L.
Posted: Friday, July 1, 2016 3:06 PM
Joined: 12/15/2011
Posts: 16107


I wish that primary care doctors could be more confident in their diagnostic abilities, instead of wishy-washy.  Often there will be an overlap of diagnostic reports that hint at depression as a diagnosis, or contributor.  In that case, the patient should be treated aggressively for depression.  This means appropriate antidepressant medications and talk therapy for a minimum of three months.  Memory loss and cognitive complaints are a part of the depressions, of which there are several types, just as for the dementias.


If there is no response to aggressive treatment for depression, the patient can be offered a trial of cholinesterase inhibitor drugs (Aricept or Exelon).  This is what was done for me.  I had no response to antidepressants.  


The patient should also undergo an overnight sleep study in a hospital sleep lab, looking for sleep apnea, which causes memory loss and cognitive impairment.  After three months of treatment, usually  CPAP, the patient can be reassessed.  In my case, I had improvement in some areas but worsening in other areas when my neurocognitive tests were repeated after the trial of CPAP treatment.  So the neurologist persisted in my diagnosis of cognitive impairment not otherwise specified.  


The diagnosis of the dementias is a rule-out diagnosis, after all other possible causes have been searched for, treated, and ruled out.  


Usually, the doctors will tell a patient that everything is all right if the tests are normal, so there is no reason for them to be concerned.  This is not the case.  If everything else is all right, then there IS a reason to be concerned, because the results point toward one of the dementia.


The diagnostic process is unnecessarily slow, IMO.  But that's the way it is.  We have to keep putting one foot ahead of the other, and proceed.  Otherwise, we will get nowhere.  My doctor offered me Exelon patch, and it has helped me.  It took exactly two years from when I told my internist I was having trouble functioning in May 2007, until the time I began Exelon patch in May 2009.  Here we are in July 2016.  I am doing better than I was doing in 2009.


Iris L.


BlueSkies
Posted: Saturday, July 2, 2016 2:46 PM
Joined: 2/24/2016
Posts: 1096


I finally found this "thread" again with the help of Iris.  Thank you Iris  
I think the problem the doctors have with me is that I had an extensive mental health background in my younger years do to severe emotional, physical and sexual abuse.  I over came a background that should have made most people psychotic for life.  I grew up in mental hospitals till 18 years of age and it wasn't until as an adult I found a doctor that specialized in treating abused women and had his own special hospital in south Florida.  I finally got the help I needed and got off all the psych meds that were keeping me sick.  His first line of treatment, God bless him and I eventually recovered with his and his staffs help.  I have gone to college, got a degree, got married, had 2 children, worked as a social worker for many years and then became a polysomnographer.  I did sleep studies on patients, interpreted the results and wrote up a reports for the doc.  I loved my work, it just got too hard to do anymore due to impaired cognitive problems that just keep getting progressively worse.  I consider myself fully recovered from mental issues and very happy.  Now the problem is, whenever I have a problem the doctors can't explain with their tests they immediately want to put me on psych meds.  Don't get me wrong.  I am not against all meds.  I just know what works for me and what doesn't.  I just can not take these meds well.  I always have terrible side effects and have been hospitalized for these side effects many times, so they are severe.  But the main reason I don't take them is that I don't "need" them.  I am happy.  I love my life.  Compared to the life I had growing up, I am in heaven.  It hurts and is frustrating to have to always try to convince the doctors that I am okay, just having physical problems or in this case cognitive which I believe with 100% certainty is not related to any depression or stress.  That's all my primary doc wanted to do.  I eventually went to a neurologist and failed memory tests, but MRI and blood tests looked good.  She said I was fine and "if I wanted" lol, I could make a follow up appointment in 6 months.  So, I have decided after talking with my husband to just see where this goes and if it continues to get worse I will probably end up going to a special hospital as many here have recommended.  But that takes money and time away from home that we can not afford right now.  So here I am, hoping to connect with others like me.  By the way, I did call ALZ assoc.  They are the ones that led me to this site and gave me other valuable information.  They were wonderful to talk to and they thought I could use the support available on this site.

Iris L.
Posted: Saturday, July 2, 2016 3:29 PM
Joined: 12/15/2011
Posts: 16107


Blue Skies, I'm glad you found where you originally posted and were able to post valuable background information.  Unfortunately, as I said before, and as many have stated, it is par for the course for us patients to get the run-around for months and even for years, before getting a working diagnosis.  We don't want to be diagnosed with dementia or cognitive impairment, but if this is what we are dealing with, we want to know sooner, rather than later, so we can do something about it.  


Doctors, psychologists and other professionals are mostly CLUELESS about the signs of early dementia.  It is true that the signs and symptoms may overlap other disease conditions.  But that is where their professional knowledge is supposed to come into play.  They are supposed to be able to discern the various clues and come to a reasonable conclusion.  My own internist told me that I needed a hobby.  Can you imagine that!  Yet, he would not have said that to an early cancer patient.  I was a pediatrician in my career life, so I am very familiar with the diagnostic process.  


I have been here for seven years and I have read many patient stories.  I call us patients Dementia Pioneers, because we are the first generation of patients that is proactively involved in our own treatments.  We have to learn from each other as to how to proceed.  We have to draw encouragement and support from each other.  The outside world is so blind and so limited against PWDs (persons with dementia).


Our type of medicine that is practice in the United States is called allopathic medicine.  This is the use of drugs for treatment.  This is the primary treatment that doctors, including myself, study in medical school and hospital residency training.  So drugs are the first treatment doctors will think about.  In many cases, drugs are all the doctors will think about.  The appropriate drugs may and can work wonders.  But it is vital to make the correct diagnosis.


Professionals confuse depression with apathy.  I read this all the time on these boards.  Loss of interest is a sign of depression in a regular person.  But in a person with dementia, apathy is present.  Apathy is loss of interest, but without the negativity and grieving and loss of self esteem of depression.  I searched and searched until I found information about apathy in dementia.  I am familiar because I have felt apathetic, but I was not negative or depressed at the time.  I understand how you feel.  Most doctors cannot understand this distinction, because they never heard about it.  


I am not saying that PWDs don't become depressed, or don't exhibit depression.  What I am saying is that apathy and depression are two distinct conditions that will require different treatments.  Shoving antidepressants down the apathetic PWD's throat may not do anything, and may make her worse, as they did me.  At various times, I have become depressed, but at those times I had feelings that were distinctly different from plain apathy, and I took different steps to treat the depression.


What I suggested for your case, Blue Skies, is to undergo an extensive set of neurocogntive tests performed by a neuropsychologist.  Their job is to examine brain function.  The testing will determine if you have memory loss and cognitive impairment, among other dysfunctions, and if there are psychological factors to consider, such as depression and anxiety and others.  This testing may take up to six hours, and is preceeded by a personal interview with the neuropsychologist.  It is best to work with a neuropsychologist who regularly works with older adults.  Many work with children and are consultants in disorders such as autism or attention deficit, and thus may not be as familiar with the diagnosis of the dementias.


The testing is not something to consider as failing or passing.  It is a determination of the state of your brain function.  In the early stages of dementia, blood tests for hormonal and other disorders may indeed be normal, along with some imaging studies.  Some memory centers are able to offer PET scans that can determine abnormalities that point towards Alzheimer's disease in the early stages.  The purpose of doing the preliminary blood and other tests is to search for the many medical conditions that can mimic dementia.  Also, the medications that you take must be evaluated for memory loss side effects.


When I had my first neurocognitive testing in 2003, I was told that Medicare did not pay for it, so I had to pay cash, which was ~$2,000.  By 2008, insurance did pay for my testing, and I believe I paid a small copay for the office consultation.


The purpose of early diagnosis is to be able to begin treatment with medication early.  Exelon patch has done me a world of good.  I posted about my seven years on Exelon patch.  You can find that thread on the "Younger Onset" board.  I will bring it to the top for you.  Here is the link for that thread.

 

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147526593


Also, the patient will need time to adjust and to make preparations for the future.    This is what we patients discuss on these boards.  Usually, changes don't happen quickly with dementia, for the most part.  We still have time to enjoy our lives.  We have to make accommodations.  We have to accept what is now, so that we can go forward.


I hope it will turn out that your symptoms  do not indicate dementia, but some other condition or medication side effect.  Check everything out.  Do not hesitate to seek second opinion, if necessary.  Read a lot, and post a lot.  We are here for you.  We are walking the same path.  If you do turn out to have dementia, you can still have a good life.  It will be harder, but we will be here to help you.

 

Addendum:  I want to add that in over seven years, my own neurologist has not diagnosed me with dementia or Alzheimer's disease, even though I have significant symptomatology.  I believe this is because I am functioning fairly well with treatment, in other words, stabilized or plateaued.  If I can't be cured at this point, I am satisfied with plateauing.  This is what I was offered when I first joined this board in 2009--a treatment that would prolong the early stages.  This is what I have--a prolongation of the early stages.  Although in actuality, I am better than I was in early 2009, before I began Exelon patch and Best Practices.    I truly believe there is hope for patients who begin treatment early.


Iris L.


Gig Harbor
Posted: Saturday, July 2, 2016 11:04 PM
Joined: 3/10/2016
Posts: 573


Hi Blue Skies,

Do you live near a large university that might have a memory/neuro  division? If you do, possibly you could get in for a workup. 


Iris L.
Posted: Sunday, July 3, 2016 1:52 AM
Joined: 12/15/2011
Posts: 16107


If you join a clinical trial, all medical evaluations and neurocognitive testing and imaging studies are provided at no cost to you.  In fact, they may even pay you a small stipend for participation.  You might want to check this out.  I think you can check www.clinicaltrials.gov.

 

Iris L.


jamesmatheson
Posted: Saturday, July 23, 2016 12:02 PM
Joined: 5/19/2015
Posts: 3


I offer these two answers

One is wear a camera on your shirt and have a professional group watch online to give you periodic assistance.

If you agree I can offer you this service for free

Two is dont eat food with pesticides. Pesticides is the leading cause of Alzheimer's

 


llee08032
Posted: Sunday, July 24, 2016 7:07 AM
Joined: 5/20/2014
Posts: 4406


James,

I have to wonder your intent for coming to our board? I don't doubt that pesticides could be harmful to the brain but what about the trillions of people who have eaten pesticide sprayed foods for years who do not have AD or brain damage? More of the current research is pointing to viruses, infections and inflammation. 

Please do not solicit any type of service on the board free or otherwise!


Mimi S.
Posted: Monday, July 25, 2016 7:02 PM
Joined: 11/29/2011
Posts: 7036


Hi llee, Your replies to James are noted. Since he's new on our boards and a PWD, lets hear more from him.

Yes, pestisides are blamed for al sort of bad effects on our body.

Yes, folks blame just about everything for causing Alzheimer's.

 


Wommant
Posted: Monday, September 12, 2016 10:09 AM
Joined: 9/8/2016
Posts: 45


I can understand hoe hard is this, keep thinking positively, maybe it's not so bad as you think, hope you'll feel better soon!