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Disappointing 1 st visit with university memory clinic
larry10
Posted: Sunday, July 16, 2017 8:25 AM
Joined: 10/18/2016
Posts: 27


I've been diagnosed with MCI by a neurologist and a psycho neurologist  after several hours of testing. There are a number of things that could affect my memory, years of taking anti depressants for depression,  possible stroke, car wreck where I was knocked unconscious, chronic insomnia and being 74. I thought by seeing seeing "the experts" at a university neurology department, I might find out if there was a reason for my diagnosis other than my fear of starting the long decline into alz. 

I was checked into the neurology dept. and put in an exam room. In comes a student with a tag hanging from his chest labeled "student".  He tells me he will be interviewing me and will then   meet with the doctor and then the doctor will see me. For about 15 to 20 minutes I told this person my concerns listed above and my hope of possibly finding out if there might be other reasons for my memory problems. He leaves and after a while the doctor and the student return. Something got lost in in the translation of my concerns and how the doctor approached the meeting. Nothing was said about my concerns and hopes. It seemed he was more concerned about my getting tested by an occupational therapist for a driving evaluation than anything else. I wasn't really concerned about my driving at this time. I have had in the last 2+ years times where I have been lost on familiar road about 3-4 times. This is momentary, and I shortly remember where I'm at and adjust accordingly. I would say my driving is 99% ok.(no wrecks, bumps or scratches so far,  cross my fingers)

Well the short of my 1 st meeting was a mini mental test where I did learn something new. He stated the summary of our meeting that I have " amnesic MCI with memory loss". So I I've now read where MCI has 2 classifications, 1) amnesic MCI (dealing with memory and 2) non amnesic MCI dealing with thinking and decision making.

He made an order to have my driving tested where if I failed he could have my license revoked,  an order for an MRI, an order to release records from previous hospitals about the car wreck and possible stroke a and to see him in 6 months. End of session 1.  A sleep clinic where I have been going to for my chronic insomnia had prescribed Zolpidem (a generic for Ambien) for my sleep disorder. The doctor said to stop taking it but did not prescribe and would not prescribe another sleep aid, so I felt left somewhat hanging. He may be right on that point, after reading up on sleep meds, I don't think any of them are good for elderly with memory problems. Anyone have an opinion on this or about my experience with this doctor? I'm beginning to think that exercise and diet are probably the best meds to help stave off cognitive decline?


Mimi S.
Posted: Sunday, July 16, 2017 9:07 AM
Joined: 11/29/2011
Posts: 5961


Hi Larry,

It certainly does not sound as though you got the testing you were hoping for.

From your library, ask for a copy of The Alzheimer's Action Plan by Doraiswamy and Gwytherf of Duke Univ. Compare with the testing you received.

The mini mental test is absolutely not adequate. You need a neuro-psych.

Personally, since you are not now having problems, I'd delay the driving test. I ha the same momentary forgetfulness of where I was going that you write about. I think the momentary forgetfulness is a warning sign but not cause for having a driving test. Unexplained dents on the car or taking much longer than expected to arrive at a destination would be . 
Yes, diet and exercise are important. But a good diagnostic procedure is more important to know just what is going on.

Iris L.
Posted: Monday, July 17, 2017 11:31 AM
Joined: 12/15/2011
Posts: 14523


I'm a bit confused, Larry.  Did you have a series of sophisticated neurocognitive tests, lasting several hours, before your recent appointment?  That's more that the mini mental test.  That testing can determine your cognitive status, whether you have MCI or dementia.  I think the neurologists feel that they have to do the mini mental at every visit.  I know my doctor did, in the beginning.  I don't know why, when he had the results of several more complex tests.

 

I hope the neurologist had reports from your PCP to confirm the absence of treatable medical causes.  The sleeping pill zolpidem can impact memory and cognition.  I was on a different medication which the PCP discontinued, since it impacted memory.  Two years ago I discontinued Lunesta, a sleep aid, and after a withdrawal period, I believe I do notice some improvement in my attention, although my long term memory seems to be worsening.  I did not stop the Lunesta cold turkey, but weaned myself off.  I use melatonin to supplement my natural melatonin, although it does not act as a sleeping pill.


You're right, exercise and diet as part of Best Practices is the best approach to staving off cognitive decline.  Also, reducing other risk factors as much as possible.  Following Best Practices is working for me.


You initially asked about joining a clinical trial. If you want to do that, and can, go ahead, as an patient with MCI.  You can add to the scientific knowledge base.  Otherwise, continue with Best Practices, and follow up with the neurologist when scheduled.  You might also work on your legal paperwork, such as POA.  Figure out how you can monitor your own progress.  That's what I am doing.


Iris L.


dayn2nite2
Posted: Tuesday, July 18, 2017 1:05 PM
Joined: 6/20/2016
Posts: 1136


Typical experience.  I'm sorry to say that it really doesn't matter whether you go to a small neurology clinic or a big university one.  Experience is the same.  

Sleep meds make brain functioning worse.  Your insomnia is probably due to your brain function or your circadian rhythm is off (which is also part of the disease).  Ambien is also notorious for causing people to do things while still sleeping like eat, drive, go for a walk, etc. 

I personally never saw any of the ALZ meds work for my mother and believe they are money down a hole but others here feel differently.

There's really no telling what is causing your symptoms.  As you already know, the only "real" diagnosis comes on a brain autopsy and while possible stroke and your auto accident are likely, the others aren't as likely.  


Iris L.
Posted: Tuesday, July 18, 2017 4:00 PM
Joined: 12/15/2011
Posts: 14523


My personal belief is that the medications such as Aricept and Exelon patch work best the earlier they are begun.  They may improve functioning and may prolong the early stages.  If they are begun late, their may be limited or no change.  I have been on Exelon patch with Namenda for eight years, and I can tell every day that they are making a difference in my life, in the area of maintaining my ability to live independently, and even travel on my own, even though it is getting a little bit harder.  Unfortunately, some PWDs are not improved by the medications, given at any time.


Iris L.


larry10
Posted: Wednesday, July 19, 2017 9:37 PM
Joined: 10/18/2016
Posts: 27


I did finish the book- The Alzheimers Action Plan and I'm not concerned about my driving at this point.

I did have about about 4 hours of testing by a neuro psychologist. The Memory Clinic doctor at this university should have had the test results at our 1 st meeting but I guess he didn't.  I had them sent but signed a release to have them sent to him. This is why he gave me the mini mental test, I guess.  After having a new MRI done, I'm not sure why I would have to wait 6 months to see him again. I don't have much confidence in this doctor.

I've tried melotonin  and it didn't do much. I've decided to do something different, I made an appt. with an integrative medical clinic.  The doctor is an MD and an internist. They don't accept insurance and I have to pay for it all except maybe for lab test. I've heard good things about this approach so I'll find out.

I'm also thinking about going to a plant based diet.  I just found out that processed foods cause cancer. Hot dogs, lunch meat, bacon to name a few.  I think this clinic offers help in this area. I was watching a video which said all protein comes from plants. So why do we have to feed protein to animals and then eat the animals to get protein?


Mimi S.
Posted: Thursday, July 20, 2017 8:01 AM
Joined: 11/29/2011
Posts: 5961


Good luck, Larry.

You can get protein from vegetables but you have to investigate. For example, if you eat beans and rice together, you get protein, but not if you eat them alone. 

So you need to go on-line and check the protein content of foods you are eating. How much do you have to eat to get 4 grams of protein.

Often when a test result is missing, the doctor's office will call ad the test will ber immediately sent.
Six months is a fairly normal time between appointments for dementia. However, you should aways have the option to call before if you have concerns.

Iris L.
Posted: Thursday, July 20, 2017 11:04 AM
Joined: 12/15/2011
Posts: 14523


Look for the Mediterranean-MIND diet.  You can make it vegetarian if you prefer.  Antioxidants are well supplied through fruits and vegetables and legumes.


Iris L.


Brdy64
Posted: Sunday, July 23, 2017 1:14 PM
Joined: 7/22/2017
Posts: 7


I have moderate alzheimers my sister took away all sugar and potatoes homemade bread only and no mayo. my insulin use is zero now and I did improve she also added 2hours of walking everyday with olive oil in cooking and coconut oil in bread. lots of veggies. I take Exelon 13.3 patch and 20mg Namenda if I don't take I fall very fast within hours. fish chicken veggie good fats diet and exercise seems to level off the thing. I don't use insulin anymore and my weight is dropping. my only problem is being locked home alone all day I wish people would come see me.
miz8kate
Posted: Wednesday, August 16, 2017 8:24 PM
Joined: 10/5/2016
Posts: 8


Hi Larry,

I too am 74 and was diagnosed with Alzheimer's about 14 months ago. I feel very lucky that I was diagnosed early by a nurse when I was in the hospital for an over-reaction to a poison ivy medication which I had been taking.  I immediately went to a local neurologist who said, "Yes, you have Alzheimer's. Here is a prescription drug." That was it!! I'm sure they are not all like that but I am going it alone with my regular MD and the generic for Aricept. It does help but it is the only drug for AZ and is about 14 years years old!!

If you are tested and IF you have AZ you should attempt to get into one the the many  AZ drug trials which are going on all over the U.S. and have many companies involved. I was not "bad enough" to get into the first trial that I chose but earlier this year I was accepted into a trial which has been a wonderful experience for me. You will need a study partner to participate with you and go to monthly visits.  There is no charge--in fact you are paid a small stipend after each visit. Recently I was started on a "study drug" or a placebo, both of which are provided by the drug companies.  It is too early to tell if there is a difference but the best thing the drug does for me is to GIVE ME HOPE!  It is so important to stay positive!!!

Your story sounds similar to mine in that I too took Ambien for about 4 years--apparently it had not been tested enough?  Other than that, I had owned a business for many years and did a lot of travelling. I feel very lucky to have been diagnosed early!


Iris L.
Posted: Wednesday, August 16, 2017 10:22 PM
Joined: 12/15/2011
Posts: 14523


Welcome, Kate. I'm glad to learn that you are doing well.  I was unable to participate in any clinical trials.  I have been doing relatively well myself after eight years on Exelon patch and Namenda XR and following the other aspects of Best Practices.  I too love to travel and just returned from a cruise to Alaska.   I hope you will join us on the Younger Onset board.  Most of us patients post there.


Iris L.


Faunava
Posted: Thursday, August 17, 2017 10:23 PM
Joined: 8/17/2017
Posts: 1


Your experience sounds familiar to mine. I was seen by a neuropsychology practice for a four session of mental tests. The subsequent report was not helpful.

I can drive, I can draw the damned clock and count backwards from 100 by sevens etc. My mother had Alzheimer's and those symptoms showed up later.

I keep hearing it is important to get early diagnosis What for?  Doctors seem to shrug and dismiss you.I had MRI, sleep study which found no Rem sleep; No recommendations. I took Zolpidem for several years. I would notencourage anyone to use it especially if memory problems are present. Likewise I was prescribed various SSRI s They all had serious side affects. I conclude exercise and good nutrition are currently the best ways to maybe slowAlz.

I know there are elder care lawyers and that may be necessary but for now I need help with managing expenses and paying bills. I have no close relatives who can help so I would like to know what others in my situation recommend.

 

 


Iris L.
Posted: Friday, August 18, 2017 12:00 AM
Joined: 12/15/2011
Posts: 14523


Welcome, Faunava.  I was like you.  I did fine on the mini-mental exam, but extensive testing confirmed my reports of difficulty with handling my finances and with word finding and speech.  Treatment with Exelon Patch and Namenda and Best Practices have helped me for the past eight years.  I put many bills on automatic debit from my checking account.  I am in the process of making accommodations in order to manage my impaired life by myself, as I do not have a care partner.


I am downsizing and putting systems into place.  Later on I will hire a neighbor to help me, as I have done in the past. If I get worse, I will enter an independent senior living apt or assisted living.  My dx so far is cognitive impairment nos.


Early diagnosis is important to get affairs in order.  The stories on the Caregiver boards are chaotic.


Iris L.


miz8kate
Posted: Thursday, August 24, 2017 3:17 PM
Joined: 10/5/2016
Posts: 8


Hi Larry,

I too am 74 and was diagnosed with Alzheimer's  a little over a year ago. At one point, there was no cure for the disease but now there are several companies testing for ALZ drugs that are in the late stages of testing.  It could still be over 2 years--government is very strict about putting new drugs on market. In the meantime, they accept people into their testing groups and (if you qualify)  you could be receiving a potential drug or a placebo. They provide well-qualified doctors in all areas of expertise and pay you and your partner for each visit. I feel so  fortunate to have been accepted.  I also feel that this is the only chance for finding a real cure for Alzheimer's (it is not too late for me) and for everyone who needs it!

Do NOT GIVE UP. Go to ClinicalTrials.Gov  to find trials in your area.

My trial is 100 miles away and i go monthly with my daughter. I have been on a trial drug or placebo for 2-3 months. My Alzheimer's took a long time to get here and may take a long time to slowly go away ----BUT I want to see my grandsons graduate from high school and college, I want to have great grandchildren!  I want to travel to the few states that I have not seen!  I am still enjoying life and plan to do so until I die of a heart attack or whatever? I am not giving up and neither should you. 

PLEASE find hope. Listen to Iris, who has such a positive outlook.  I wish I could meet with Iris every day for coffee! I wish we could meet with you every day! PLEASE FIND HOPE


miz8kate
Posted: Thursday, August 24, 2017 3:33 PM
Joined: 10/5/2016
Posts: 8


Brdy64,

In many moderate sized towns there are senior support groups that have various activities and also help with shopping, etc. I am sure there are people like me who still drive and would enjoy helping others or just spend time with them. Being at home alone day after day is not good. Perhaps your daughter could look for some options for you. Maybe some of the people on this site have more options or ideas. Keep looking!

Kate


miz8kate
Posted: Thursday, August 24, 2017 3:38 PM
Joined: 10/5/2016
Posts: 8


Larry,
Please do not give up!!  Join a clinical trial, keep busy, enjoy the outdoors while the weather is nice, go see a good movie.  Life is not over! I wake up with a smile and go to bed with a smile. I have HOPE!

Kate


need to "let it go"
Posted: Friday, August 25, 2017 7:39 PM
Joined: 2/16/2015
Posts: 189


Any books out there that explain dementia to the patient in informative, non-alarmist fashion?  My 90-year old mother wants to understand what's going on.  Thanks.
Mimi S.
Posted: Saturday, August 26, 2017 10:52 AM
Joined: 11/29/2011
Posts: 5961


Hi need to let it go.

I think you might want to go to alz.org and pre-screen videos, looking for what you want. Most books would have too much information.

Also, online see if :Thoughtful Dementia Care: Understanding the Dementia Experience. Jennifer Ghent-Fuller would be helpful. 


Most of the best books about the disease are written by those who were diagnosed while still working. When I was first diagnosed, I found I'm Losing by Mind by Tom DiBasio. He was older. All I could think of was: And he wrote two books after diagnosis!. Possibly your inter-library loan might be able to get you a copy. I lucked out and bought the book at a sale when my library got rid of it.

 

Is she computer-savy? Do  have her join us here.  If she is asking and is comprehending, do answer questoinns and help her find answers.


 
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