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Neurology Update
Posted: Monday, October 14, 2013 7:41 PM
Joined: 12/5/2011
Posts: 127


Dear Friends, today I got the results back from my neuro-psych test I took 3 weeks ago. And I must say I was taken a little by surprise. But you see if I had been thinking in terms of reality, I shouldn't have been. But due to the barrier of the cognitive thinking in my mind I did not see the results that I received today coming. The doctor asked me how I thought I did and my response was that I really didnt have one other than sharing that halfway through the test (which took 5 hours) my mind was exhausted and felt like it was shutting down. She said that the test actually reflected that response. All in all, here is what she told me: She went through ALL my tests, MRI's, CT's, Blood Tests, EEG's, Clinical evals and prior neuro-psych tests (this is #3 in 11 years) and she said that with the interview that she did with me and my son before the test, that everything was consistent with here findings of according to the tests they all showed deterioration in the right frontal lobe of the brain and everything is consistent with the findins of Pick's disease, HOWEVER, when she actually sits and talks to me it is difficult because she doens't see a Pick's patient as I am verbal and able to recall so much of my past such as 15-40 years ago. But, my short term memory is  and has been consistently, slowly but yet stably declining over the years. She told me that would be the continuance as well, that I will not get any better. You see, I still hold a valid driver's license and she said my spatial skills were off the chart and I should not be driving and that is her recommendation to my neurologist who I will see on October 31st. She told me that if I was to take the test that they have for people with memory dysfunctions and brain injuries that according to all of my clinical findings I would fail it. This was a blow to me as I thought in my dementia mind that I was doing so well. Well as always, today, I was slapped back into reality. She told me that whatever I had been doing all these years to stay as functioning and advanced as I was to continue to do so, but do so with caution and to be aware of the continued decline that will take place. She told me to continue on with my meds (namenda & tegretol) and to keep whatever adaptations that I have used over the years in place and to continue to use them. She said she had never seen a person with Picks disease decline so slowly, but the findings say otherwise. So, I called my local Alzheimer's Association and gave them a update as I hadn't spoke with them in many, many months. You see, dementia had a stronger hold on me than I realized as I was living in a world of disbelief. Every year for the last 8 years I have been very active for and with my local and even at one time with the National Alzheimer's Association. But this year I was feeling that the doctors had misdiagnosed me and the tests were all wrong and that because of that I didn't belong as a part of the association. BOY, was I wrong!!! So wrong! I apologized to my chapter and they understood why I had been apart from them and told me I had no reason to apologize. I will tell you all this, especially if you are new in dealing with any type of dementia. If you are not familiar with your local Chapter, you need to be. My chapter was there for me in the beginning in 2002 and are still here for me now. Next year, I will be raising funds as always, Lord willing. But, the CEO of my local office shared with me that Pick's disease is a very slow moving disease and that they have had and even have several that have dealt with this disease for 18 to 20 years, so what I shared with them came as no surprise to them. Anyway, this is my story and I follow up with my neurologist on Halloween. Thanks for being here and listening to an old lady ramble. Love to you all, Tracy (younghope)

Iris L.
Posted: Monday, October 14, 2013 8:15 PM
Joined: 12/15/2011
Posts: 18502

May you continue to be slowly progressing, if not plateauing, Tracy!

Your written communication is excellent.

Be very, very cautious about the driving, if at all.  Are you making plans for when you will have to stop?

Whatever you are doing, it's working.  Do you have any tips to share with us?

Iris L.

Posted: Monday, October 14, 2013 9:19 PM
Joined: 12/6/2011
Posts: 3326

Thank you so much, Tracy, for the update. It's wonderful that Pick's is so slow, and great that you've found clearer insight.
Posted: Monday, October 14, 2013 10:31 PM
Joined: 3/21/2012
Posts: 439

i, also, have the behavioral variant of frontotemporal dementia, sometimes referred to as Pick's Disease.  and i, too, am declining slowly.  others sometimes don't believe that there's anything wrong with me because my conversational skills are still relatively good.  i was diagnosed in 2009 at the age of 54. 


i have found great support from the Association for Frontemporal Degenerations, which can be found by going to their website.  they are very quick to answer any questions and have lots of resources.


also, i have been going to a local support group of the Laurel Highlands Alzheimer's Foundation here in my town.  even though i don't have alzheimer's, it is for any type of dementia.  in fact, they have been my funding source for an in-home aide to come in one day a week because i live alone and, although the FTD is in slow progression, it is progressing.  i live alone and have no caregiver.  i attend the support meetings to glean resource information as well as socialization.


i have been on aricept and namenda since my diagnosis as well as depakote e.r. that helps with my verbal outburts and mood swings as well as my FTD headaches.  i also take paxil for anxiety and ambien at night to help me sleep because i was getting my days and nights mixed up.  initially i was experiencing "sundowning", but that has waned somewhat. 


 initially i saw a neuropsychiatrist several times.  now i see a neuropsychiatrist, neurologist, personal therapist (to help with the changes and adjustments this disease brings) and have cognitive therapy to help with my cognitive functions.  as a matter of fact, i just had my annual cognitive eval; last year there was a significant decline from the previous year, this year there was much less a decline from last year.  i've kind of "leveled off" and hit a plateau, which is good.


my prayers are with you for i, as well as all of us on this forum, know what you are going through.  we are with you throughout this journey.  this form is invaluable!

Mimi S.
Posted: Tuesday, October 15, 2013 4:41 PM
Joined: 11/29/2011
Posts: 7027



As always it is wonderful to hear from you. Do you have anyone go with you to your appointments. If that is not possible, you should be given the reports and discussions in written form. 

This is not just for you, but for others with any type of dementia, who go to appointments by themselves.

And we must realize that some of us progress quicker than others. Some of feel that our participation in Best Practices contributes to the slowness. Whatever, each of us is an individual and so is our progress.


And Nomeno, I'm so glad things are also progressing slowly for you. 
The help you are receiving from your chapter is one very visible result of the Walks to End Alzheimer's (and other dementias.)

Posted: Tuesday, October 15, 2013 5:19 PM
Joined: 12/5/2011
Posts: 127

Thanks everyone for your replies. As for Austin he graduated high school in May and is now working at Hardees and was planning to start college sometime next year. After what he heard the doctor say yesterday I can see he is now more concerned knowing I am at risk with certain issues. I don't want to become dependent on him and will not allow myself to. He is going to go to see my neurologist with me on the 31st. He is afraid I won't tell him everything and wants to be there. After that visit and we have a more clear vision of my neurologists decisions and recommendations then we will go from there and move forward with our next chapter in life. Someone had asked what things I had been doing to do as well for as long as I have and this is my answer.

1. My faith is very strong and I have prayed for these years to see Austin grow up through his teens and now becoming a young adult.

2. I got my strength knowing I had to be here for Austin

3. I have always stay very busy with activities through my church and through the Alzheimer's association doing things that have given me a purpose.



Mimi S.
Posted: Tuesday, October 15, 2013 8:30 PM
Joined: 11/29/2011
Posts: 7027

Dear Tracy,


I'm so glad Austin comes with you to all your doctor's appointments. Two sets of ears are better than one.

Has Austin driven as a passenger with you? If he has done this several times, his opinion should be listened to as you make the decision about driving.

Do keep active in your church. It certainly seems to be helping you.

Posted: Tuesday, October 15, 2013 11:56 PM
Joined: 12/5/2011
Posts: 795

T racy,


It is soooo good to hear from you. 

sounds like things are going well with just a slight decline.


What great news,  I'm glad to hear  Austin is doing is doing well  too!


I am thinking and praying for you and Austin.


Keep up the good work!


Please, stay in touch.


Peace and Hope,


Jo C.
Posted: Wednesday, October 16, 2013 10:27 AM
Joined: 12/9/2011
Posts: 13593

Hello Dear Tracey, this is just your good old, "Auntie Jo," chiming in.  It is always a joy to hear from you and I want to say thank you so much for sharing the results of your testing with us.


It is wonderful to hear that your FTD is moving slowly and that you are able to really hear what the doctor said to you and recognize that you had not been understanding how compromised things had become, but now you do.  I am sorry about the loss of driving privileges, but I think that you will do the right thing and give up driving in order to avoid anything negative from happening.  Really and truly, that is now absolutely imperative and I am sorry that must happen.


It is good Mr. Austin is going to the Neurology appointment with you at the end of the month - ALSO - the specialist who just spoke to you about the results of the testing will have sent a written report to your Neurologist -


You may want to ask for a copy of this written report to take home so you can refer to it from time to time which may be important considering short term memory and that FTD sometimes likes to try and hide some of the issues one is facing.


It is amazing; here is Austin, all grown up!  Gosh, time passed so fast.  I am glad he is doing okay and that he is such a fine young man.  This stage of development is a hard transition for most young folks and it sounds as though he has risen to the occasion.


Please do continue to let us know how things go with the Neurologist.  We all think of you so often and we truly do care.


With a big hug to you,


"Auntie" Jo

Posted: Saturday, October 19, 2013 7:06 AM
Joined: 12/5/2011
Posts: 127

Auntie Jo, as always I look forward to hearing from you and thank you for your continued words of support and encouragement. I will give an update from my neurologist on Halloween.



Paul Hornback
Posted: Saturday, October 19, 2013 11:46 AM
Joined: 8/9/2013
Posts: 584

Good luck and I hope your follow up with the neurologist goes well and you get answers to your many questions. My neurologist was great as he helped me work through all my fears and issues with my disease (Early Onset Alz). Can't wait to hear your report at the end of the month. Stay positive, hopeful, and connected with folks as it does help!

God Bless, Paul