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kate4450
Posted: Tuesday, January 3, 2012 2:58 PM
Joined: 12/7/2011
Posts: 11


I have been reading this message board for many months and just want to thank everyone for the wonderful advice and information I have gathered during that time.  This is my first post as it has taken me awhile to come to terms with my diagnosis of dementia, probable alzheimer's type.

 

I first noticed symptoms about 5 years ago.  I am a registered nurse and worked in the OR.  I began having difficulty adjusting to different surgeons and was eventually assigned to just three different surgeons.  I was successful with this change until last March when my difficulty understanding orders and remembering drug dosages almost led to a serious mistake.  I walked out of the OR for the last time that day and haven't been back.

 

I saw a neurologist five years ago when it all began and he believed that my memory loss and information understanding problems were due to two concussions I had recently suffered.   I ignored the increased symptoms until the OR incident.  Since that time I have had numerous tests which included 7 hours of neuropsych testing and have been followed by the University of Michigan.  The U-M neurologist and my home town neurologist have both come to the same conclusion; that it's probable Alzheimer's.

 

My dad was diagnosed at age 55; my maternal grandfather at 70.  My U-M doctor is scheduling me for a PET scan in the near future.  Has anyone had a recent PET scan?  What can I expect?  Thankfully my insurance company will cover it; I already received preapproval.

 

All for now.  Again thank you and I look forward to continued learning from this message board.

 

Kate4450


folly
Posted: Tuesday, January 3, 2012 5:59 PM
Joined: 12/6/2011
Posts: 31


Kate, welcome to a warm, supportive forum.  I'm glad you're able to post after lurking for awhile.  Hopefully someone more knowledgeable about PET scans than I will be along soon.  It's good that your insurance has already pre-approved you.
nwlegaleagle
Posted: Wednesday, January 4, 2012 12:21 AM
Joined: 12/6/2011
Posts: 3326


Welcome, Kate!  Myriam here. I had a PET scan done in July. I remember not being able to drink or eat before the scan. When I got there, they gave me an intravenous injection of something radioactive, which took about an hour. Then I went into the scanning room and laid down on a table and they slid the table into the scanner. I was told to be very, very still. The noise was very loud. They gave me headphones to listen to music, but it was difficult to hear it. The process took about a half hour. I don't have a problem with claustrophobia, but I think it would be very difficult for someone who does.
Iris L.
Posted: Wednesday, January 4, 2012 12:50 AM
Joined: 12/15/2011
Posts: 16200


Welcome to our online support group, Kate.  We're glad you're here but sorry for the reason you came.  I had a PET scan done through the auspices of a cancer clinical trial.  I was the non-cancer control. My PET was interpreted as unremarkable.  Since this was a clinical trial, there was no charge for it. 

 

 

 

I was a pediatrician before I developed fairly sudden onset of memory loss in 1987.  I had to stop practicing quite suddenly--,my mind kept going blank.  Unfortunately I've had many diagnoses in the past 24 years, including depression/anxiety, chronic fatigue syndrome, fibromyalgia, systemic lupus, hypothyroidism and now sleep apnea. 

 

 

 

I had more testing in recent years; my diagnosis now is "cognitive impairment nos--not otherwise specified".  I've been on Exelon patch and Namenda for the past 2 1/2 years.  I'm scheduled next week to repeat the neuropsychological testing to compare with three years ago.

 

 

 

Were you diagnosed by a neurologist skilled in diagnosing Alzheimer's?  Are you on any medication?  Taking medications is part of Best Practices, which also include eating a Mediterranean diet with lots of olive oil and anti-oxidants, vigourous physical exercise, brain stimulation, and socialization.

 

Here is a link to Mimi Steffen's video, "One Step Ahead of Alzheimer's":

http://www.youtube.com/watch?v=Q2w9LG3hMlU 

 

 

 

 

 

 Iris L


kate4450
Posted: Wednesday, January 4, 2012 5:50 AM
Joined: 12/7/2011
Posts: 11


Thank you all for your warm welcomes and information on PET scans.  I was diagnosed by a neurologist in the cognitive impairment clinic at the University of Michigan.  U-M is listed on the Alzheimer's site as a regional referral center for Alzheimer's.   I had been diagnosed by my local neurologist with EOAD about 7 months ago but it wasn't until U-M confirmed the diagnosis that I really believed it.

 

I have been on Aricept and Namenda for 7 months and can't believe the difference it has made.  I no longer search for words when talking, I write well again, and the fog has lifted.  My short term memory continues to decline, I get lost in cities when driving (I don't drive in cities anymore), I just hear jibberish when people are talking to me at times, I have difficulty balancing my checkbook and doing simple math, and no longer watch movies on tv; can't follow the plot. 

 

I live alone and feel very isolated at times.  That's why I decided to finally start posting on the message boards.  My brother-in-law helps with my finances and my sister helps with my meds.  They live next door.  My sister, who is also an RN, goes with me to all doctors visits.  That has been a great help. 

 

 

 


Michelle 50
Posted: Wednesday, January 4, 2012 8:35 AM
Joined: 12/28/2011
Posts: 43


Welcome Kate! I too am an RN new to this site just being diagnosed with EOAD last week after two month of testing. It's been a bit of a difficult time especially dealing with family that don't want  to believe it. My children are having a hard time coming to terms with it and this has upset me because I so need them to be there for me right now. I'm hoping in time things will calm down and my family will except my diagnosis. They have been trying to tell me it's probably depression or anxiety that has caused my symptoms and that's pretty frustrating to me. I do understand that it must be very hard for them to except since I am only 56 and they saw what happened to my mom with this disease. I was just started on aricept and nortriptyline  for depression. I have tried to get on a clinical trial in Boston but they told me I could not because I was on  anticholinergic and that I would have to be off it three months. Anybody have any suggestions for a good  antidepressant This seems to be helping and I hate to change but I do have a dry mouth because of it. Enough about me I'm glad you found this board as I have, it sounds like you have got a great support system which is also very important. I look forward to hearing from you again.


Ttom
Posted: Wednesday, January 4, 2012 10:28 AM
Joined: 11/29/2011
Posts: 182


kate4450 wrote:

Thank you all for your warm welcomes and information on PET scans...

 

 I had been diagnosed by my local neurologist with EOAD about 7 months ago but it wasn't until U-M confirmed the diagnosis that I really believed it.

 

I have been on Aricept and Namenda for 7 months and can't believe the difference it has made. .... 

 

I live alone and feel very isolated at times.  That's why I decided to finally start posting on the message boards.   

 

Michelle 50 wrote:

Welcome Kate! I too am an RN new to this site just being diagnosed with EOAD last week after two month of testing.

 

I was just started on aricept and nortriptyline  for depression.

 

 Anybody have any suggestions for a good  antidepressant This seems to be helping and I hate to change but I do have a dry mouth because of it. 

 

 

 

 

 Welcome kate4450  and Michelle 50: 

 

Glad you found us. We want to "Be there for you, always"! Don't have a clue about how to fight dry mounth. I've had it since the day I started taking Aricept and an anti-depressant. Tried to fight it for a while but was never successful. Now they have added other durgs that have dry mouth as a side effect and I have quit trying. Just throw on a smile and keep trucking. 

  

My disclaimer:
I'm not a professional in this area, only a person with AD that cares about others and can express myself yet. Diagnosed at age 58 in Stage 5, now appear firmly in Stage 4 for now- wonderful meds! I 'm 62 now..

We encourage you to call the Alzheimer's Association's 24/7 Helpline

1-800-272-3900 . Ask for a Care Consultant who will be available

Helpful hints for slowing the progression:

  1. Get Early detection
  2. Start the required drug therapy
  3. Avoid stress
  4. Mediterranean diet with antioxidants and Omega 3
  5. Mental and physical exercise


LATER... Tom


 


Mimi S.
Posted: Wednesday, January 4, 2012 4:27 PM
Joined: 11/29/2011
Posts: 7035


Welcome Kate.

 

I'm delighted that you're getting a PET scan. And also glad someone took the time to tell what the experience is like.

 

I have AD and know  the Director of a local Memory Clinic. I've learned so much from him, having attended many of his talks. He often shares pictures of PET scans. Seeing the sequence of scans from no dementia to mild, moderate and severe makes one wonder why more insurance companies don't cover it.  It certainly makes the diagnosis much more definite.

And I understand the problem of diagnostic confusion with the post concussion syndrome.  I have a 48 year old son who is currently diagnosed with that. His cognition is pretty bad. I recently published a book. He told me that he and his daughter had looked through it and he hoped someday to be able to read it. 

As far as I know, a PET scan was not among the many scans he had. And hopefully, for you, it will be more diagnostic proof.

Lisa, one of our Peer Volunteers, is also a former RN. Sounds as though you and she have much in common.

I'm delighted to see that Iris found that old video of mine. I just had a reevaluation neuropsych. Results were more or less the same as three years ago. No scores in the lowest quartile. The examiner credited the results to 2 things. I've developed superior coping skills. And my persistance in following the Best Practices have enabled me to be at a higher cognitive level than I was at the time of diagnosis.


Iris L.
Posted: Wednesday, January 4, 2012 7:09 PM
Joined: 12/15/2011
Posts: 16200


Mimi S. wrote: 

 

 

 I just had a reevaluation neuropsych. Results were more or less the same as three years ago. No scores in the lowest quartile. The examiner credited the results to 2 things. I've developed superior coping skills. And my persistance in following the Best Practices have enabled me to be at a higher cognitive level than I was at the time of diagnosis.

 

 

 

Yea!!! Good for you, Mimi!  Your success gives us more motivations to pursue Best Practices!

Mimi, tell us more about your book.  Where can we get it?

Iris L



Geegee
Posted: Thursday, January 5, 2012 11:21 AM
Joined: 11/29/2011
Posts: 514


Kate and Michelle,  welcome to our online family.  I am so sorry for your recent diagnosis.  Many of us have gone through dx and the initial feelings that follow.


You have come to the right place.  We want to support you along the way.  It's all a sharing experience here, learning from each other as we experience various changes.


Each dx is unique.  How your brain is affected by this disease will be different from mine, or Tom's, or Myriams.  Strengths, weaknesses and abilities will also be different.  


Welcome!  Glad you can be a part of this great Message Board!


JAB
Posted: Thursday, January 5, 2012 11:59 AM
Joined: 11/30/2011
Posts: 740


Mimi, I suspect you and Kate may be talking about two different types of PET scans.

 

What a PET scan is designed to detect depends on the "dye" that is used (e.g., the radioactive compound that nwlegaleagle had injected.)

 

The dye that is available to the general public detects regions of the brain that metabolize glucose.  Generally speaking, insurance won't cover this if the purpose is to diagnose dementia per se, but will cover it if dementia has already been diagnosed, and the purpose is to try to differentiate between Alzheimer's and frontotemporal lobe dementia.

 

The dye that your mentor is so enthusiastic about is experimental.  It (theoretically) detects plaque, which is seen in the brains of patients who have Alzheimer's.

 

Unfortunately, high levels of plaque are also sometimes seen in the brains of people who do not show any signs of dementia.  And the studies conducted to date have not, to my knowledge, shown a correlation between the amount of plaque and the degree of progression, either.

 

Many researchers feel that plaque may actually protect the brain from damage by a soluble component of plaque, Abeta, and that detecting the soluble Abeta is what would be useful in diagnosing Alzheimer's and tracking progression.  The dye doesn't detect soluble Abeta.

 

A patient should not be charged for an experimental procedure.  And it's unlikely that insurance would cover it.  This dye has not yet undergone clinical trials or received FDA approval.

 

In any event, the experience of undergoing a PET scan is pretty much the same, no matter which dye is used ... so nwlegaleagle's answer is relevant.


Iris L.
Posted: Thursday, January 5, 2012 4:01 PM
Joined: 12/15/2011
Posts: 16200


Geegee wrote:

 ...Each dx is unique.  How your brain is affected by this disease will be different from mine, or Tom's, or Myriams.  Strengths, weaknesses and abilities will also be different.   


 

 

 

 

 

 

Geegee, I think it is SO important to emphasize what you wrote:  "Each diagnosis is unique."    We do need to focus on our strengths, compensate for our weaknesses, and make use of our abilities.  We can still have a good life even with dementia.  We just need to learn how. 

Iris L.



Iris L.
Posted: Thursday, January 5, 2012 4:19 PM
Joined: 12/15/2011
Posts: 16200


kate4450 wrote:

 

I saw a neurologist five years ago when it all began and he believed that my memory loss and information understanding problems were due to two concussions I had recently suffered.    

 

 

Kate4450

 

 

 

Dear Kate, A simplified explanation is that brain damage from traumatic brain injuries is usually static, meaning that whatever damage you have received at the time of the injury usually will not get worse.  On the other hand,, what distinguishes the brain damage from the dementias (Alzheimer's, vascular, FTD, Lewy Body etc.) is that it is progressive, meaning that damage inevitably gets worse over time.  The time may be long or short. 

 

 

 

 

 

 

 

 

 

 Past brain trauma is one of the risk factors for Alzheimers.  Unfortunately, no one can quantify just how much brain trauma will stimulate the development of Alzheimer's.   

 

 

 

 

 

 

 

 Iris L. 

 

 



kate4450
Posted: Thursday, January 5, 2012 4:34 PM
Joined: 12/7/2011
Posts: 11


I just heard from U-M today and my PET scan is scheduled for Jan 10th.  They left a message and asked that I call to get all the specifics on what to expect.  I'll call tomorrow.  Again, thanks for all the information.  My PET is the glucose uptake one.  My neurologist said if it was negative it really wouldn't mean much but if it was positive (speed of glucose uptake in areas of the brain) then it would be another indicator of EOAD.   I think I remember her explanation correctly.
Geegee
Posted: Friday, January 6, 2012 8:34 AM
Joined: 11/29/2011
Posts: 514


Kate, let us know what you learn from U-M call today.  Good luck on the 10th.    
Mimi S.
Posted: Friday, January 6, 2012 3:28 PM
Joined: 11/29/2011
Posts: 7035


Hi Iris,

The book I wrote is titled: Rural Schools of Wayne Co. (PA). It has a wider application to events throughout the state and more or less follows the rural school movement throughout the states. It's available through  the Wayne County Historical Society web site: www.wynehistorypa.org/

 

I write about it only to answer your question. I'm not pushing it for this audience. Of course I rejoice that five years after diagnosis, my dream of seeing it in print has come true.

 

When I was first diagnosed I went to the library. There I found Losing My Mind by Thomas DeBaggio. I got so much comfort from knowing that he wrote two books after he was diagnosed.

 

One of the resolutions I made after diagnosis was that I would go public . I wanted others to benefit from being diagnosed early.

 

As a result of this and being chosen to do a year's stint on the Early Stage Advisory Group of the National Alzheimer's Association, I have had many opportunities to spread my belief in the Best Practices.

 

If you use your search engine and google Mimi Steffen, you'll find a lot. Some I much prefer to others. One of them, which shall be nameless, my younger grandkids were not allowed to watch. The final shot was fantastic videography. I did a big double take when I watched. There was a shot of me and some of the grandkids. I gradually disappear from the group  as the segment ends.


SteveSanJose
Posted: Friday, January 6, 2012 10:06 PM
Joined: 1/3/2012
Posts: 189


Good for you. Cooping skills are a learned thing, and are easier for some than others. I follow all a Mediterranean diet, and that seems to help with memory also. I hope to prolong my AD stages as long as possible. I know I can do this with proper lifestyle, and diet.
Iris L.
Posted: Saturday, January 7, 2012 12:23 AM
Joined: 12/15/2011
Posts: 16200


Good for you, Mimi.  You wrote that book after diagnosis, correct?  I started to write a book after 9/11 because of my  experience of being married into Muslim family in a Muslim society..  I have pages and pages of long-hand script, but no real manuscript.. I could make sentences, but I could not come to conslusions.

I feel very sad that my book won't get written, because I believe I have a unique vantage point to open up more cultural understanding .

I checked--my library has the book, Losing My Mind, and I just put it on hold.  I look forward to reading it.

Iris L.

 

 


Cheryle Gardiner
Posted: Saturday, January 7, 2012 11:07 AM
Joined: 11/30/2011
Posts: 529


Iris L. wrote:

Good for you, Mimi.  You wrote that book after diagnosis, correct?  I started to write a book after 9/11 because of my  experience of being married into Muslim family in a Muslim society..  I have pages and pages of long-hand script, but no real manuscript.. I could make sentences, but I could not come to conslusions. 

I feel very sad that my book won't get written, because I believe I have a unique vantage point to open up more cultural understanding . 

 

I checked--my library has the book, Losing My Mind, and I just put it on hold.  I look forward to reading it. 

 

Iris L. 

 

 


Iris, have you considered looking for an editor to help you complete your book? I would hate to think your perspective would be lost for lack of help getting it into publication. You might even be able to find a nearby college student who would help you with it for the experience.

Iris L.
Posted: Saturday, January 7, 2012 9:44 PM
Joined: 12/15/2011
Posts: 16200


Cheryle, right now my "book" is in the form of my thoughts.  I know a book has to be put together in a way so as to keep the reader's attention. 

I thought about putting my thoughts into a blog, but that would defeat the purpose of a book. 

 Anyway, I have so many issues going on right now, my book is low in priority.  But thank you for your suggestions. 

Iris L.


Geegee
Posted: Sunday, January 8, 2012 11:46 AM
Joined: 11/29/2011
Posts: 514


Mimi, we are all SO proud of your accomplishments.  I've said many times, and will continue to say, you are An inspiration to us all !!!!



IRIS,  I know that Mimi's  book is encouraging to you.  What A great book you have in your head and in pen script at this time.  I would hate to see your story, your perspective lost.  


Im sorry you have so many issues going on that you need this at the bottom of priorities   I can understand this.  My own life feels overwhelming at this time.  


  Perhaps you could even dictate the words in your head to script.  At Christmas I bought my guy a speech recognition softwear  program by Dragon to help him write a book.  

He miraculously lived through an experience while placed in a medically induced coma for 7 days and placed in a rotoprone bed.  

  He's been struggling to get it some of this slowly on paper.  He can tell his story much more effectively than he can write.  So this I hope will help him share his unique events.

My point is that I liked Cheryl's suggestion.  I would love to see you go forward. 
At least you can consider it ...
Another day!   


Boy, have we gotten off topic here!  


Iris L.
Posted: Sunday, January 8, 2012 12:28 PM
Joined: 12/15/2011
Posts: 16200


Geegee wrote:

 

 speech recognition softwear  program by Dragon  

 
   
I've heard of this program.  The Disabled Resources Center uses this software, but currently it is only available for the people who are employable.  Perhaps I'll purchase it for myself.  Thank you for the idea and the encouragement, Geegee.
Sorry to hear about your BF.  I hope he is progressing in his recovery.
Iris L.


SteveSanJose
Posted: Sunday, January 8, 2012 5:25 PM
Joined: 1/3/2012
Posts: 189


Welcome Kate, to our board. I first had MCI, three years ago, and now have Alzheimer's related dementia. I do cannot follow a movie or TV plot, but I see it this way. Watching a movie is like I am seeing it for the first time, which is a good thing. It's like things are new, more often. This gives me challenge, that every person needs. Friend I am going to a sports event, I bring a radio. It's like having audio to description. I have found that I can do most anything, but have to do it in a different way. It is a learning, and a coping skill. I used to have more problems putting words together, until I started speech therapy, as part of adult day care I go to. I go to adult day care, two times a week. It includes the social aspects, along with speech and physical therapies. I also see a psychologist, and go to a weekly peer group. Do all you can to help yourself, and adjust to your new disability's. There is so much out there.
Tonya2
Posted: Tuesday, January 10, 2012 11:08 AM
Joined: 12/8/2011
Posts: 33


I couldn't remember where to post this but wanted to share my experience about pet scans....

First please get it in writing that your insurance will pay...I got the go ahead four times on the phone and so did the provider right before the scan but they ended up not paying....even though I fought it I was out 5k.....

I hope I'm not too late....

Second the scan for me was more like a ct scan...I'm claustrophobic but closed mris are much harder for me than the pet scan was....

That's all...

Best wishes....


kate4450
Posted: Tuesday, January 10, 2012 12:29 PM
Joined: 12/7/2011
Posts: 11


I had my PET scan today; much like a CT but longer.  Also had radioactive glucose injected 30 minutes before the test.  Hardest part was staying awake in a dark room for 30 minutes after the glucose was injected!  My sister and I had to leave at 4:00am in order to get to the hospital by 7:15am so I was very tired and relaxed by that time.

 

I guess I'll just have to pray that the information that I and the hospital received from my insurance company was correct.  The doctor had given me the billing code she would be using.  This is the same code that I gave to my insurance company.  I'll let you know if I have any problems.

 

Don't know how long it will take for the results.  Thankfully my doctor is going to call with the results and not require another appointment.  I'm very tired of seeing doctors.

 

Can't remember if I mentioned this but my "northern neurologist" increased my Aricept to 23mg per day since I have had such a good outcome with it.  I hope my GI tract can handle it!


Geegee
Posted: Tuesday, January 10, 2012 7:43 PM
Joined: 11/29/2011
Posts: 514


Kate, I'm glad that your PET is complete and you are just needing to wait for the results.


Good luck with the increase in dosage of Aricept.  My GI couldn't handle it because of my IBS.  It really took a toll on me.  The good thing...I lost a few dress sizes!

LOL!  



Mimi S.
Posted: Wednesday, January 11, 2012 9:49 AM
Joined: 11/29/2011
Posts: 7035


Hi Kate,

Thanks for the info. We'll be waiting for further results. And I don't think the results of the CAT scan would be influenced by how tired you were. We'll we waiting for your results.