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MindCrowd.org what do the results mean
larry10
Posted: Wednesday, May 24, 2017 7:12 AM
Joined: 10/18/2016
Posts: 27


I have been trying to join clinical studies without much success. I have been diagnosed with MCI which is complicated with having been in an auto wreck 2 years ago where I was knocked unconscious for several hours. (I was having memory problems before the wreck)  Clinical studies seem to presume there is TBI even though nothing was said about this during my recuperation. What seems to be left to me for joining clinical studies is online studies. One study is called MindCrowd where you take a 10 minute exercise. It's basically a word match recall exercise.  It gives you the results right away and says you are seeing how you compare to others but doesn't say how the comparison is made, i.e., percentiles or somethng else which is a bit confusing. I did very poorly with a number of 3 ( I think I got 1 correct answer out of 12). For my age group I see a number 66.  Using percentiles, do I assume 3 % of the group did worse than me and 97% did better than me? What does the 66 mean? Does this mean 66% of the group did worse than me (hard to believe) and 34% did better than me? As far as this exercise is concerned, I think I would have done poorly even in my better days! During the 4 hours of tests I took to determine my MCI, I remember a similar test which really frustrated me.


Mimi S.
Posted: Wednesday, May 24, 2017 8:27 AM
Joined: 11/29/2011
Posts: 6212


Hi Larry,

I can't interpret your results. I wouldn't worry too much about those on-line tests. Many of them are designed to get you to signup for some exercises you pay for. There are many things one can do one self without paying anything.

For clinical trials have you contacted the Alz. Assoc. for trial match? Call the help line 1-800-272-3900.  Every trial has criteria one must meet to get involved.  Some folks say that Early Onset folks are often denied. Others with other conditions are also excluded.

Do get involved in Best Practices. If you don't know what these are, do ask.


Iris L.
Posted: Wednesday, May 24, 2017 3:21 PM
Joined: 12/15/2011
Posts: 15302


Hi, Larry.  I read in your profile that you have a long time history of insomnia.  Have you had an overnight sleep study in a hospital sleep lab to search for sleep apnea?  Sleep apnea impacts memory and cognition.  


Instead of focusing on the MCI diagnosis, which really is vague, think about your functioning.  How are you doing at home?  Can you manage your finances well, manage your housekeeping, your marketing, preparing meals, do the laundry and use the telephone.  Are you driving?  How do you get along with the people in your social group? 

Many doctors are unsure of what to do with patients who present with early stage dementia symptoms.  Some believe in early intervention, and will prescribe medications.  Some may not prescribe medications, but will have a program of careful observation for possible changes.  Patients with TBI may exhibit improvement in cognition over time, with or without specific cognitive rehabilitation or other therapies.


What are you seeking by joining a clinical trial?  Michael posted a link to a group that offers clinical trials.  Also, you can go to https://clinicaltrials.gov/.


Iris L.


larry10
Posted: Saturday, May 27, 2017 7:20 AM
Joined: 10/18/2016
Posts: 27


To- Mimi S  Thanks for your response to my MindCrowd.org question. Trying to find and getting into a clinical study I've found is not easy. For all that I read about clinical studies not finding enough volunteers runs contrary to my experience. Of coarse you have to qualify, but then your location to a test center is also a barrier. I've tried Trial Match and have talked to the helpline people. On line studies seems to be the easiest, I've signed up for the Brain Health study and the Gene Tech.(not sure of it's official name) where you send in a mouth swab to check your DNA which might qualify you for future studies. I'm aware of the sites that offer mind exercises to keep your mind in shape but I don't do this. I do wonder where mind trip is going. Yesterday I missed a back to back doctors appointment in the same office. The 1 st appt. was with a cardiologist and the second in the same building was for a echo cardiogram which I forgot  about. Yesterday also I remember pulling up to a stop light and my next memory was to be around the corner past the stop light and wondering if the light was red or green when I made the the turn. Sometimes things seem funny, I do remember pulling up to a 4 way stop sign and finding my self sitting there and wondering why the light doesn't change!
Iris L.
Posted: Saturday, May 27, 2017 1:07 PM
Joined: 12/15/2011
Posts: 15302


Larry, I am concerned that your immediate needs are not being addressed.  Being in a clinical trial is not a substitute for medical care, because some in the clinical trial get the placebo, and thus no treatment.  You might be a person who could benefit from Aricept or Exelon patch, like I do.   I am concerned about your driving.  Driving safely is so important, as you already know. Since you are already having difficulty, what is your next step?   


Regarding missing appointments--What I do to avoid this is to make good use of my wall calendar.  I know many use the calendar on their telephone, but I am old school in this regard.  I write down my appointments, with the doctor's name and the time and the telephone number, in case I need to call them, and don't have time to look up the number.  I then outline the calendar block with a marker.  This lets me immediately know that I have an appointment coming up.  


I check my calendar every day.  At the beginning of the week, I make a To Do list and include every appointment that I have for that week.  Some of my doctors' offices will call a couple of days prior to remind me of an appointment.  You might ask the doctor's office to call you one or two days before, even if it is not their usual practice.  That is an accommodation that you could make to help yourself, and they should do it.


Iris L.


larry10
Posted: Sunday, May 28, 2017 4:29 PM
Joined: 10/18/2016
Posts: 27


Hi Iris- I'm a little concerned by my driving too. Most of the time I do fine but once in awhile I have some problems.  With my driving, unless something bad happens or I get a really bad scare, I'll keep driving.

  Good question about Aricept, I've talked to my family doctor who served a residency in geriatric medicine. She has mentioned Aricept but did not specifically recommend it. Next time I see her I'll bring it up. My understanding is that these meds do not work for everyone, have side effects and not a long lasting effect, maybe 6 months.  You have had different results I take it?

My appointment: I do write them down on a calendar( I have a smart phone but it outsmarts me most the time and I don't use the calendar on it). The doctor offices around here are good about calling me several times before my appts. Haven't missed an appt. in a long time. This back to back appt., I guess it threw me. I finished with the one and didn't remember the 2 nd one. I usually write the appt. for that day on a piece of paper and put it on the kitchen table or tape it to the coffee pot  to remind myself.

I've gone to a sleep clinic for my chronic insomnia.  I'm now trying trasodone 50 mg just before bed. The last 2 nights I've gone to bed at 10 and didn't wake up until 6, maybe this will work! I hope the effect will not wear off to where I have to keep increasing the dose.

 


Mimi S.
Posted: Sunday, May 28, 2017 7:38 PM
Joined: 11/29/2011
Posts: 6212


Hi Larry,

You should not have to  be pushing Aricept. It's time, in my opinion, for another evaluation.Do you have a large University or Medical School in your area? It's worth a hotel stay to get the best. Yes, it will take time for an appointment, but it will be worth it.

Do get involved ASAP in Best Practices.


There are other things you can do to help slow down the course of this disease, including:

(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:

Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.

To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you. 

Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)

Avoid hydrogenated fats and trans fats like the plague.

(I also take Omega 3 and antioxidants.)

(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)

(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.  (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)

(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)

(5) Plenty of rest. 

(6) NO SMOKING!!! and avoid air pollution as much as possible.

(7) Do whatever you can do to minimize stress.

(And take meds as directed.)

Re Aricept. Not all drugs work on everyone.

Lots of people benefit. The 6 months is a myth.  I've been taking Aricept for years.  If you take in the evening, because it can drowsiness, take in the morning. Don't drive until you can check it's effect on you.

Common is also GI upset.  Try a lactose free diet.
If the current meds are working for sleep, why not stay on the same dose to see what happens. It might be possible once your body has returned to a good sleep pattern, that you can slowly, reduce the dosage.
Do stay with us.

 


 


Iris L.
Posted: Monday, May 29, 2017 1:00 AM
Joined: 12/15/2011
Posts: 15302


Larry, when I joined eight years ago, I was told that the medications could help with my functioning and help prolong the early stages.  They were never offered as a cure.  I have found that my medications have done what they were supposed to do. I made a thread about it and I'll search for it.


Regarding driving.  Due to our limitations, we may not be totally aware of our driving.  See if other drivers are honking at you, or if you have dings on your car.  Are other people reluctant or even scared to drive with you?  You might ask someone to drive along with you or behind you to check out your driving.  Seek out alternate arrangements. 


I used to take trazadone.  I took it about 30 minuted before I wanted to go to sleep.  I found that with all of my sleep meds except one, I became tolerant to them.  So I made a plan to rotate sleep meds every three months, so I would not have to increase the dosage, and thus risk addiction.


Iris L.


larry10
Posted: Wednesday, May 31, 2017 7:38 AM
Joined: 10/18/2016
Posts: 27


Hi Iris and Mimi- thanks for your suggestions and encouragement, I find it very helpful. I was tested for 4 hours last Dec. and was diagnosed with MCI.  This gave me a baseline for future testing. I told myself at the time that in a year I would reevaluate myself by keeping notes during the year to see if I should be retested. With MCI you can get better, stay the same for years or go into Alz. It's been about 6 months and it hasn't gotten better or stayed the same.  Wait and see. Where do I find the Best Practices information?

Does Aricept really help with mental errors I make? Will I stop making them? It is frustrating when I can remember things that happened 50 years ago and can't remember the name of the street in front of my house consistently.  I'm wondering what it costs, I'm on Medicare Advantage and have to watch it. Those tier 4 drug costs are killers!

Driving; good tips. No dings and dents yet and no horn honking at me. I do find it annoying that even when driving the speed limit, people tailgate you. But I guess that's normal. I did take a couple of years ago the AARP senior driving coarse for 8 hours. I learned that old people's reflexes slowly erode with time and you have to watch your driving more. Costs about $12 and I found it helpful.

Iris- good idea about rotating sleep meds, I never thought about doing that. I took trasodone for years when I was working for situational depression and the dose got pretty high as my body tolerated the increasing higher dose rates. I think I remember a dose rate of about 400 mg and I felt my mind was 'sparking out' and we had to do something different.  Last night I slept for 8 hours but felt like I was waking up a lot so I think my body is already starting to tolerate it.

 


Mimi S.
Posted: Wednesday, May 31, 2017 8:14 AM
Joined: 11/29/2011
Posts: 6212


Larry: 

Best Practices Information

There are other things you can do to help slow down the course of this disease, including:

(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:

Basically, it involves:

- High intake of vegetables, legumes, fruits, and cereals

- High intake of unsaturated fatty acids (mostly in the form of olive oil)

- Low intake of saturated fatty acids

- Moderately high intake of fish

- Low-to-moderate intake of dairy products (mostly cheese or yogurt)

- Low intake of meat and poultry

- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.

To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you. 

Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)

Avoid hydrogenated fats and trans fats like the plague.

(I also take Omega 3 and antioxidants.)

(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)

(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful.  (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)

(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)

(5) Plenty of rest. 

(6) NO SMOKING!!! and avoid air pollution as much as possible.

(7) Do whatever you can do to minimize stress.

(And take meds as directed.)

 

Re Aricept question. I don't think anyone can give you an answer. I don't think the manufacturers promise such a thing although some folks report that they have seen an improvement. The drug is designed to slow down the progression of the disease and is not touted as a cure.

 


Iris L.
Posted: Wednesday, May 31, 2017 4:28 PM
Joined: 12/15/2011
Posts: 15302


Larry, I found my thread about my experience with Exelon patch, which is in the same category as Aricept.  Within a few days of beginning the initial, lower dose of Exelon patch, I noticed improvement in my memory and my speech.  Everyone's response will be individualized, but there is no way of knowing without a trial of taking Aricept or using Exelon patch.  Donepizil is the generic form of Aricept and may be less expensive.  There is also a generic form of Exelon patch, but I did not find it to be helpful for me.

Here is the address of my prior thread about my experience with Exelon patch.

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


I take the AARP driving refresher workshop every few years.  It is very informative and is good for everyone our age.


Larry, you say you were diagnosed as MCI, but you haven't said how you are doing.  I have a dx of cognitive impairment nos, but I was doing very poorly at home.  I felt that I was ready for assisted living, because I was having so much difficulty in my daily life.  I got to the point where I relished the idea of using Exelon patch, because it was my only hope of being able to live independently.  And after eight years, I am still living independently.  


The progress of the dementias is losing our faculties and capabilities so that we need assistance in more and more areas of life.  Exelon patch, along with Best Practices, is helping me with this.  So, in my opinion and in my experience, Exelon patch and Best Practices are doing what they were intended to do, which is help my functioning and prolong the early stages.  


I am somewhat confused about your seeking to join a clinical trial.  What do you want to accomplish?


Iris L.


larry10
Posted: Thursday, June 1, 2017 4:42 AM
Joined: 10/18/2016
Posts: 27


Thank you for your replies. Is there a place where Best Practices are listed?

Iris- I opened your thread on your experience with Exelon and read all of it. I learned a lot but it does bring up a lot of questions. I was encouraged that the med has helped you for years.

Aricept vs. Exelon patch- both are used for the beginning stages of ALZ? Which is better? What does Namenda do for you? This sounds pretty complicated.

Maybe I should start seeing a neurologist like you do. Any ideas on how to find a good one? The Univ. of Iowa is about 60 miles away and have not been there. I saw one neurologist and he just wanted to see me back in a year and had no plan for me. Another one I saw about my sleep disorder told me to "live with it", meeting over.

I'm wondering if I should start these meds? You ask how am I doing. I take nothing now except 2 supplements, Vit. B12 and B complex for my mind. My ex family doc told me to take them. I now see a gerontology doc. Daily I think I do ok. Can't remember words I've used before and short term memory isn't really bad but I know I repeat myself. I find myself avoiding keeping track of my financial situation puzzling. I love to walk 3 miles every morning- outside in the fresh air and it gives me an hour to think. I should take a pencil and paper with me, I know I forget some of my thoughts. I love to garden and spend time there and cutting grass and trimming bushes. My wife complains about my anger which seems to be much less with a good nights sleep. Right now I   have a number of house projects to do since we just moved. I am able to plan and complete projects. All in all, I'm seeing some diminished mental functioning and know it could be a lot worse. My deep concern is where is this leading. Should I try meds now or just wait and see.

Why my interest in a clinical study? To help others and myself and keep tuned into advances in care. With the auto wreck, I'm eliminated from the promising A4 study. This study is again enrolling people.


Iris L.
Posted: Thursday, June 1, 2017 10:26 AM
Joined: 12/15/2011
Posts: 15302


Hi, Larry.  Mimi posted about Best Practices just above my previous post.


Regarding the medications.  Aricept and Exelon patch are the same category of medication, one is oral and the other is a patch.  Sometimes there is gastrointestinal upset, and using a patch can bypass the GI tract.  But the GI upset may be temporary in many people.  The only way to know is to try.


Can you explain how the diagnosis of MCI was made?  Since you have the history of head trauma, it will be important to observe carefully for progression of symptoms.  Usually head trauma does not show progression, whereas the dementias are progressive.  


Have you had an overnight sleep study in a sleep lab to check for sleep apnea?  Sleep apnea may or may not be associated with snoring.   Sleep apnea causes the oxygen level in the brain to be lowered and may be a reversible cause of memory loss.


I had a long history of insomnia and was on sleep aids for many years.  I weaned myself off two years ago.  It was very hard, but I succeeded.  I now fall asleep naturally after following good sleep hygiene tactics and learning more about my own sleep disorder.


I was referred to a good neurologist by my rheumatologist, after visiting a neurologist who told me I was okay.  You can ask your medical plan for a neurologist who regularly diagnoses and treats people with the dementias.  Ask your university medical center for a dementia neurologist on their staff.   You can also call the Helpline and ask to speak with a Care Consultant for help in locating an appropriate neurologist.  This is so important because there are many medical mimics of dementia that may be reversible.  It takes a specialist to do all the testing necessary to rule out the dementia mimics.  This process takes some time.


Many medications cause memory loss as a side effect, and this is more prevalent in older adults.  You can check www.rxlist.com or www.drugs.com to see if any medications that you take have memory loss as a side effect.  


Without a through evaluation, it is not a good idea to begin medications.  You would not know what you are treating.  Unfortunately, in our current medical climate, patients must become more proactive in their own care.  We have to push the doctors sometimes.  My suggestion to you is to learn more about the diagnostic process, and to consult with a dementia specialist.  You will know if there are medical causes that need to be treated, and you will have a baseline for further observation in the future.  You are seeing a cardiologist; cardiovascular problems cause memory loss also.  Everything needs to be checked.


The Alzheimer's Action Plan is a book by Doraiswamy and Gwyther of Duke University that has good informtion.  You may be able to borrow this from your local library.  You can also read more about the diagnostic process in the main website, www.alz.org.


In the meantime, keep a close eye on your symptoms, and make accommodations.  Keep reading this board and also read the YOAD board, because there have been many who are still in the diagnostic process.  The other thing to think about is to maintain safety.  You are doing home projects; be careful around tools, especially electric power tools.  Get help with your finances if this is becoming a problem for you.


This is all for now.  I may not have answered all your questions, Larry, but keep posting.


Iris L.


BadMoonRising
Posted: Friday, June 2, 2017 10:08 PM
Joined: 4/22/2017
Posts: 165


So I took the MindCrowd test and did a little research. Reddit had some information. The number you received at the end of the test is your percentage of correct answers (12 pairs times 3 trials) out of 36. The numbers associated with the various groups also reflect the percentage of correct answers for each of those groups.

Regardless of your result on the MindCrowd test, I'd suggest going to the University of Iowa Hospitals Memory Disorders Clinic (if your Medicare Advantage plan will pay for it) for an evaluation. 

FYI, I had a neuropsychologist recommend Aricept to treat MCI and I declined because the studies at that time did not show that Aricept had any effect on MCI. My somewhat limited experience is that some neurologists will prescribe it at that stage and others will not.

 I strongly encourage you to go to the Memory Disorders Clinic and get evaluated for both your sleep disorder and cognitive issues.


larry10
Posted: Sunday, June 4, 2017 8:10 AM
Joined: 10/18/2016
Posts: 27


Thank you BadMoonRising and Iris

I spent quite a bit of time answering your questions Iris and should have copied it before posting it. When I hit the post button, instantly an error code appeared and my response was lost. 

I think I will consider BadMoons advice and think about getting my doctor to refer me to the U. of Iowa memory clinic(neurology dept.).  I think I'm fatigued thinking about should I stop thinking about my possible condition or trying to be proactive about it.


Iris L.
Posted: Monday, June 19, 2017 3:29 PM
Joined: 12/15/2011
Posts: 15302


Hi, Larry.  I haven't heard from you in a while.  How are you doing?  Can you give us an update?  We are here to be an online support group, so we can support you, even if nothing much is happening.  Please let us know.  The thing about dementia is that things usually don't happen in a hurry; time can drag on.  I've been here for eight years, and it seems like yesterday.  Poof!  Where did the time go?


Iris L.


Iris L.
Posted: Monday, June 19, 2017 11:26 PM
Joined: 12/15/2011
Posts: 15302


ttt
larry10
Posted: Sunday, June 25, 2017 9:43 PM
Joined: 10/18/2016
Posts: 27


I did buy the the book, The Alzheimers Action Plan, 2008 edition.  I bought it  on Amazon for $5 postage paid. I was a little disappointed in the edition date which makes it 8 years old but I haven't found a newer edition. Anyway, I am at about p. 150 and the book is 455 pages. I'm learning a lot and the detail is great.

I am taking your advice and asked my doctor to refer me to the neurology dept. at the Univ. of Iowa.  I just checked and they have received the referral. It will probably be at least 6 weeks before they see me. I'm on Medicare Advantage and this company I'm with is really micromanaging anything I do. Even after talking to them I'm still in the dark as to what this is going to cost me. 

According to what I've read in this book so far, early diagnosis and medication can help stave off the effects better than waiting until you have full blown symptoms. So if they tell me that medication might help, I will follow their advice.

The 1 st neurologist I saw made the diagnosis of MCI and then said come back in a year and see me. I'm wondering to what end? Wait until he says I have Alz. and then do something?

 


Iris L.
Posted: Sunday, June 25, 2017 9:53 PM
Joined: 12/15/2011
Posts: 15302


Welcome back, Larry.  It can be a difficult choice when to begin medications.  My neurologist offered me Exelon patch after a trial of antidepressants which did not help.  I held on to the Exelon patch for three months before I used it.  I finally got to a time of desperation.  It really depends upon how you are doing, or actually not doing--how impaired you are functioning in your daily life.  For me, the Exelon patch made a big difference in my daily functioning, so that I can continue to live independently in my own home.  Otherwise, I would be in an assisted living facility.  I don't have anyone to move in with.


Are you working?  How are you doing at home?


I don't know why the authors of The Alzheimer's Action Plan have not put out an updated edition.  Read the main webpage, alz.org, also.


Iris L.


larry10
Posted: Sunday, June 25, 2017 10:15 PM
Joined: 10/18/2016
Posts: 27


Hi Iris- I'm  retired, I'm 74. Last Dec, I was tested by a neuro psychiatrist and he said I have MCI. I thought I would wait a year and if I felt I was doing worse, I would do a retest. It's been 6 months and I have kept a log of how I'm doing and decided I should probably do something now rather than wait.  Getting lost while driving about a week ago, not being able to think of words that I want to use, confusion in my thinking among other things has convinced me. I even was confused when thinking about the differences in 3 vegetables- cauliflower, broccoli and brussel sprouts and what they look like.  At least I enjoy my garden!

 


Iris L.
Posted: Sunday, June 25, 2017 11:33 PM
Joined: 12/15/2011
Posts: 15302


Larry, regardless of what happens with the neurologist, now is the time to begin to make back-up plans.  Forgetting vegetables is just a lapse.  How are you doing with something important, such as paying your bills and handling your other finances?  Set up contingency plans or designate a trustworthy person to help you with this.  


Be careful of your driving.  Seek out transportation alternatives now.  It's good for us to become pro-active in our own care.  This is how we become Dementia Pioneers.


Iris L.



Mimi S.
Posted: Monday, June 26, 2017 8:32 AM
Joined: 11/29/2011
Posts: 6212


Hi Larry,

Do go back and reread the posts. There may be tings you overlooked at first reading. Six months may be too soon for a new set of neuro-psychs. Will you be covered by your insurance?  I do hope you are seeing a doctor who is experienced in treating dementia patients. Do discuss your concerns.


larry10
Posted: Tuesday, June 27, 2017 4:23 AM
Joined: 10/18/2016
Posts: 27


To answer your questions, I have shied away from handling my finances. I can still do it but find myself putting off sitting down and making myself do it. This puzzles me. I have a will with the proper power of attorneys selected for health care and finances.

Woke up at 2:30 am today and went to bed at 10 so I slept for 4.5 hours. Not enough. I have a follow up apt. with the sleep therapists coming up soon.  I laid there and then read and tried to go back  to sleep but couldn't. So now it's 4 am. When I 1st started this med, I slept for 8 hours and couldn't believe how rested I felt. My wife said I was a lot less irritable when I was getting an adequate amount of sleep.

I see the univ. Iowa besides having a memory clinic, has also a sleep clinic. Maybe I can be seen by both.

I wonder how many meds screw our minds up.  I am not going to take Ambien so don't know what is left to take. For years I took meds for depression and am wondering if  "the chickens are now coming home to roost"  ?

 


Iris L.
Posted: Tuesday, June 27, 2017 12:49 PM
Joined: 12/15/2011
Posts: 15302


Larry, I agree with your wife; we do better when we are well rested.  Sleep deprivation causes memory loss.  It is important to determine if sleep apnea or another treatable sleep issue is the cause of your problems.  You might read about sleep hygiene and work on those topics, such as sleeping in a dark, quiet room and avoiding stimulating television.


There is a lot of overlap between depression and dementia.  Many people are diagnosed as having dementia after a long history of depression.  This raises a question.  Were they truly depressed, and then developed dementia?  Or were signs of early dementia misdiagnosed as depression and treated for years with little to no improvement?


Many psychiatrists are unaware that apathy is a symptom of dementia but it is not depression.  Apathy is lack of motivation to do anything, and is common in dementia.  But the people are not depressed.  Antidepressants do not help apathy.  


Another thing to think about is that many medications cause memory loss and cognitive changes as a side effect.  It is important to take past and present medications into consideration.    When you go for your appointments Larry, be sure to bring a complete list of prescription and non prescription medications so they can check for side effects and interactions.


Checking everything out takes a long time.  But it's worth it to get a good understanding of what's going on.  It's hard to be patient at times.  But you seem to be handling things, Larry.


Iris L.


larry10
Posted: Tuesday, June 27, 2017 5:28 PM
Joined: 10/18/2016
Posts: 27


Hi Iris- Going thru some past paid bills and came across a paid dentist bill from April. On the bill it says I had 3 cavities filled.  This was 2 months ago and I have no memory of the dental work. It does get frustrating to the point of doubting myself.   I didn't like the dental clinic and called another one to switch to and didn't write down the appointment and now don't know what dentist I made an appt. with!  Do I laugh or cry?  I'll figure it out- I called a couple places close by that I might have made an appt. with and was told no, I didn't have an appt. with them. Guess it's not the end of the world.

 Iris you mentioned once that you had found a way to conquer sleep problems and don't have to take meds anymore. Can you tell me how you do it? My bedroom is dark with no clock. I read on my e-reader( with the background turned down to the lowest light setting). I just read a novel until I get tired and my eyes don't want to focus anymore and then go to sleep.  Not usually a problem getting to sleep. In the middle of the night when I wake up, reading doesn't seem to help. So I get up and if after 3 am, I read the local e-edition of their newspaper.

As I thot would happen, the 50mg of trasodone has now worn off.  I should call the sleep therapist and see what he's got up his sleeve besides his arm.


Iris L.
Posted: Tuesday, June 27, 2017 6:36 PM
Joined: 12/15/2011
Posts: 15302


Ha ha, Larry!


I realized when I was taking trazodone and other sleep aids, that after about three months, my body would become tolerant to them. So, rather than increase the dosage, I decided to switch medications.  I did this for a while, so my body wouldn't get used to one medication.  Until I found Lunesta.  With Lunesta, the same dosage, 2 mg, worked for me for a long time.


Now, I read a printed book in bed until I feel drowsy.  I also have what I call sleep games, to help me get to sleep.  For example, I recite all of the states and their capitals.  If I run out of states, I do the Canadian provinces.  Then I recite the Central and South American countries and their capitals, then go on to European countries and their capitals.  I usually don't make it that far.  I also recite poems in my head.  These things always work.  I try not to get out of bed again unless I'm too wide awake to stay in bed.  My aim is to avoid sleep medications as much as possible because they all have side effects that impact cognition and memory.


I find that I must make good use of accommodations.  I must write appointments down on my calendar as soon as I make them, otherwise they get lost.  I use an old fashioned wall calendar, and I outline my appointments with an orange marker, so that I can tell from far away on which days I have to be prepared to leave my home for an appointment.  Some of my offices will telephone a day or two before the appointment as a reminder.  That is a big help, too.  I accept that my memory is diminished, and use accommodations with great joy!


Iris L.


larry10
Posted: Thursday, June 29, 2017 7:26 PM
Joined: 10/18/2016
Posts: 27


Hi Iris- I'll ask the sleep doctor about Lunesta, maybe I can try it. I know I couldn't recite all the things you mention!

This journey thru the haze has been illuminating in some ways. I always thot a thread was a spool of string, not line of thot. That accommodation was a place to sleep, not an aid to remember something.  And so my new education continues.

The book on The Alzheimers Action Plan, has been interesting. Up to about p. 220. The authors switch back and forth from speaking to a person with a dementia to speaking to a caregiver. Their were sure a lot of medicines listed in the book but after 8 years the same 4 medicines are still used. 

I'm trying to stay on the Best Practices sheet that you and Mimi S sent me. I agree with them and am sure they will keep me healthy. I would eat fish 3x's a week but my wife was raised on a farm and likes red meat. I told her to buy me a box of frozen fish and I could eat fish while she ate her red meat. I like making a tossed salad and putting in it a lot of colorful veggies. Do what we can but in the end, we may prolong our condition for awhile, but right now the prospects of a cure are only a hope. Would you agree or have I missed something?


Iris L.
Posted: Friday, June 30, 2017 12:27 AM
Joined: 12/15/2011
Posts: 15302


Yes, Larry, we do get an education and learn new meanings for old words and new ways of thinking when memory loss enters our lives.  For the most part, we have the gift of time, so we don't have to rush.


Everyone with a chronic disease is hoping for a cure.  I don't think that's going to happen any time soon.  When I was in medical school, we were taught that the only medications that cure diseases were antibiotics.  I think that's still the case.  The medications that we have for chronic diseases manage symptoms or physiologic states.  They do not cure anything.  Take diabetes, for example.  Nowadays, some patients are on an insulin pump, to try to compensate for their own failed pancreas.  But they are not cured, because they always need their insulin pump with them.  


I believe the key is to work on prevention.  Preventive measures mostly involve lifestyle habits, that we implement with Best Practices.  This is my personal opinion.  The AA and many medical centers and researchers are still searching for a cure.  I would be happy if they could prove me wrong.


Iris L.


larry10
Posted: Friday, June 30, 2017 6:39 AM
Joined: 10/18/2016
Posts: 27


Thank you Iris. 

 Have you found any vitamins or other supplements that are helpful  in prolonging our healthy mental state?  I take vitamin B 12 and vitamin B complex which was recommended by my former doctor who was not a gerontologist.  My new doctor who is a gerontologist has not mentioned what I'm taking or made any recommendations for changing or adding anything.

There is a lot of "snake oil" being peddled out there for memory.  I don't believe any of it.  Is any of it worthwhile?

I'm finding that my typing and recall of how to spell words is not as easy as it once was. 

 


Mimi S.
Posted: Friday, June 30, 2017 8:46 AM
Joined: 11/29/2011
Posts: 6212


I take D-3.

In addition and it can be ordered on line, I take OPC-3. Isotonic from Market America.  It has Potassium Bicarb, grape seed extract, red wine extract, pine bark extract , bilberry extract and citrus bioflavonoid Complex. 

I heard of it from our local guru gerontologist who ran an Alzheimer's clinic here.
Iris L.
Posted: Friday, June 30, 2017 1:47 PM
Joined: 12/15/2011
Posts: 15302


I take a senior multivitamin, extra B vitamins, vitamin C, vitamin D and fish oil.  It is best to try to get as many nutrients from food rather than supplements, if possible.  The Clinical Trials message board has lots of threads about supplements and aromatherapy.  Many people are interested in alternative or complementary medicine.   Whatever works for you, go for it, as long as it is safe.


Iris L.


larry10
Posted: Saturday, July 1, 2017 7:39 AM
Joined: 10/18/2016
Posts: 27


Hi Mimi and Iris

Thank you for the info. on supplements and vitamins. I've read and believe if you have a wide and varied diet, you get most of the nutrients you need to be healthy. With dementia I wonder can you get a "boost" to help with that condition. I guess a lot of supplements and vitamin claims are not proven to be true and their claims are kind of a "crap shoot" whether they do any good. " Crap shoot" meaning the roll of the dice. 

Iris you have asked me some questions in the past that I attempted to answer but when I went to post them, an error came back. I have been tested for sleep apnea twice, once years ago and again about 2 years ago. Both times they said I did not have it. 

I noticed my mind was not working right about 2.5 years ago. I remember my family doc saying "you're ok. I forget things to".  " You just need an anxiety pill". I think he gave the "mini" mental test and I guess I did ok but can't remember. Funny how patronizing people can be. How can anyone else know how my mind is working, they can't. People like to make excuses and rationalize for my behavior. My son who I call the "blooming optimist" and I love him for that characteristic does the same thing to me. He says" you seem ok to me Dad".

Iris you also asked how did I find out I had MCI. Since my family doc at that time would not refer me for more testing. I self referred my self to Mayos and after a month I received a letter of rejection. They did say it might make a difference if my doctor made the referral. I wonder why they let me refer myself in that case.  I next found a local neuro psychologist who does a lot of dementia testing to test me. It was 2 sessions of 2 hours each session. He did a background on me and did some kind of testing of me from various books. The 2nd session was more testing and a recap and scoring the tests. He also thot I was anxious and could use counseling. Really? Why would I feel anxious? The essence of who I am or about to be in on the line. Why would I be anxious? I don't need any anxiety pills and counseling would be doubtful. When I was severely depressed years ago caused by my job, I did do a lot of counseling. Over time, I came to depend on meds and not counseling. It was easier. I saw a psychiatrist twice a year, adjusted my meds and trucked on. Sorry I was so long winded.


BadMoonRising
Posted: Saturday, July 1, 2017 9:23 AM
Joined: 4/22/2017
Posts: 165


Larry, I may have missed it (I've been doing that a lot lately) but were you diagnosed with MCI?

IMO, given your circumstances, four hours of neuropsych testing is simply inadequate.


Iris L.
Posted: Saturday, July 1, 2017 9:39 AM
Joined: 12/15/2011
Posts: 15302


Larry, it's good that you found out that you don't have sleep apnea, since that can lessen memory and cognition.  There is a protocol for testing for dementia, which involves searching for all the possible medical and other causes for memory and cognitive loss.  These can be conditions such as hormonal disorders or nutritional disorders, old head trauma, medication side effects, and depression/anxiety. The history, physical examination, blood tests and imaging studies can determine if these are in effect.  Detailed neurocognitive testing performed by a neuropsychologist can determine if there is a loss in memory and cognition from your previous highest functioning.  If a medical condition is found, it should be treated.  If nothing is found, the patient has a diagnosis of dementia.  Then it is determined what type of dementia, because the treatments can be different.  


As far as people saying, "you're okay," and discounting the patient, would they say the same thing for a patient wondering about cancer?  We are always urged to get lumps and lesions checked out for early cancer.  No one says to wait until the tiny lump has metastasized throughout the body before any attention is paid to it.  If there is concern about memory and cognitive loss, the patient is at risk and should be evaluated and treatment begun.  That does not mean that there is a cure, but there are many interventions that can be done to improve the patient's quality of life.  Why wait?


There is overlap between depression and dementia.  Depression is a dementia-mimic.  Sometimes, successful treatment of depression can resolve the memory and cognitive issues.  But it takes dedicated treatment over some time to determine if this is the case.  It would be terrible to overlook a treatable depression and allow a person to continue with lapses needlessly.  

The other aspect to consider is that the dementias progress over time.  With a diagnosis of MCI, there may be progression, or the patient may remain stable and plateau, or may even revert back to normal.  That's why it is important to search for correctible issues, and to improve lifestyle habits with Best Practices, to give the patient the best chances of a good outcome.  I know that Best Practices are working for me.  I hope they work for you, too, Larry.


Iris L.




larry10
Posted: Saturday, July 1, 2017 3:48 PM
Joined: 10/18/2016
Posts: 27


Bad Moon Rising- Yes it was a diagnosis of MCI. I think it might have been you that suggested more testing at the Univ. of Iowa. I did what you suggested and they received my referral from my doc a week ago so I'm in the wait mode.

Iris- you make some good points. I am hoping a medical condition will be found that is treatable. Wouldn't that be nice!

Best practices, I guess is the only way to go. Can you substitute an IPA beer for a glass of wine!

 


 
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