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Willow
Posted: Thursday, February 2, 2012 7:32 PM
Joined: 1/20/2012
Posts: 43


I am new to this site although I've been reading it this past month and find it so very encouraging! I agree with many who have found they are not able to speak as freely as others with people in their lives.

I find it so irritating and discouraging when I'm trying to tell someone about my memory problem and they say they have that problem too. I try to tell them that it's not just me noticing it but my family as well and that it's not just forgetting things the way we all do from time to time.

I know people mean well when they say this but I find myself avoiding talking about it now after having this happen several times. I haven't had my testing yet and am waiting since there's such a waiting list at this time. I was told from 4 - 6 months. I don't mind the wait but am just doing the steps to be responsible and I know early detection is important.

My daughter is freaking out that there's a problem and doesn't want to believe it. Since she lives in another state it's easier for her not to see the changes in me.

Although I was really depressed a week ago I have drawn much comfort from this site and the many topics discussed here and the yoad sight.

Bless you all!


judyv
Posted: Thursday, February 2, 2012 10:58 PM
Joined: 12/14/2011
Posts: 4


Willow - sorry to hear of your problems! Where do you live that you have to wait so long for a diagnostic appointment? I can imagine the stress of waiting that long! Hope something happens to speed things along, even if you have to drive to a larger city. What does your GP say about this?
Iris L.
Posted: Friday, February 3, 2012 1:16 AM
Joined: 12/15/2011
Posts: 18354


Welcome Willow.  I have the exact same experience as you. My close friend told me "everyone has senior moments--don't talk about it" and "you are a hypochondriac" and "you're having a pity party."   

 

 Needless to say, I don't talk about my memory issues to her anymore.  Now she complains that I don't talk to her!  We can't win! with some people.  Keep coming to these boards and talk with us! - 

 

Iris L. 


younghope
Posted: Friday, February 3, 2012 7:48 AM
Joined: 1/9/2012
Posts: 27


Willow, I understand how you feel although I have Pick's disease. I was diagnosed in 2002 at 38 years old, I am now 47. At my age it is even harder for people to understand, especially when they are uneducated. I had told my church in the past that I had Pick's disease and that it was a form of dementia. One of the deacon's wifes came to me and said, 'It is hard for me to belive you have dementia, you seem so normal." I told her that it wasn't fair to judge me as she only sees me 3-4 hours a week at church. That she needed to come and spend 24 hours with my son and I and then let me know her thoughts.

 

This past Sunday in church I decided that as I have been told by my doctors that I am progressing again that I needed to share this with the church for their support. So when it came time for prayers, I asked to addresss the church for a bit. I told them again that I had Pick's disease. This time I told them more about it, that it was similar to Alzheimer's, that was the eaisest way to make them understand it. I told them there was no cure for the disease only medications to treat the symtoms. By the time I was done speaking, I think most of the choir was in tears, all you could hear through the church was sniffles. I didn't want their sympathy, but I did want their understanding. I also put a couple of facts sheets from the the Alzheimer's Association about Picks disease on the bullentin board for them to read on their own.

 

I must say that education can be most valuable when accepted as it was Sunday in my church. After church, I was embraced by so many offering to help if they could. It wasn't their help I was after, at least not at this time, just their understanding. I asked for prayers for my son as he is struggling and grieving so, but I did not ask for prayers for myself as I know it is now in God's hands. When the preacher prayed, he prayed for the both of us.

 

I shared this story with you, hoping you could share it (your story) with your friends and family. If they are open to education, understanding can go along way.

Tracy


Mimi S.
Posted: Friday, February 3, 2012 9:23 AM
Joined: 11/29/2011
Posts: 7027


Hi Willow,

Welcome to our boards.

Before I answered, I read your profile. You wrote that you were to tested the Monday after you registered. What happened at that appointment?


There is a great book about testing, among other things. The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke University. Please ask your library to get it for you.


I notice you live in beautiful Vermont! Boston has several good clinics for Dementia. If you can get to one of those that would be best. There ids a wait at most good clinics, but 4 to 6 months seems long.


However, in the meantime you can get started on Best Practices.


1. Take meds as directed. Well, not yet, but you can look for Omega 3 and antioxidants as supplements.


2. Vigorous physical exercise. The harder the better. You want to get the heart pumping. However, increase slowly. New research shows that exercise can build brain tissue. Dementia eats it away. So, you judge.


3. Vigorous mental exercise. Things as easy as using your non-dominant hand for tasks. Or as hard as learning a new language or musical instrument. Brain games and puzzles that make your brain work are good.


4. Mediterranean Diet. Again, if you are steak and potatoes, go slowly.


5. Socialization needs to be maintained or increased. Be active in organizations you belong to now. Check out your local Alzheimer's Assoc. Chapter (call 1-800-272-3900) for the local number.


Do keep in touch here.


Willow
Posted: Saturday, February 4, 2012 6:14 AM
Joined: 1/20/2012
Posts: 43


Hi younghope. Wow, you're amazing! That took a heap of courage to do what you did in speaking to your church. I'm glad they were touched and hope they can give you support now that they're more informed.  
Willow
Posted: Saturday, February 4, 2012 6:31 AM
Joined: 1/20/2012
Posts: 43


Hi Mimi! The closest testing place where I live is in Burlington which is about 45 minutes away. I feel comfortable with this and couldn't possibly go to Boston due to finances.

My PCP appt was a joke. I was not aware of how uninformed he was about this and he asked me several questions for late stages of AD and when I answered correctly he told me I don't have it and was ready to leave the room. I was shocked at such a quick evaluation and told him I disagree and finally he relented to approve of me going to the memory clinic. I was depressed and discouraged for days after because of the way he had dismissed me so casually.

The Best Practices is what I've practiced my whole adult life and not to knock it but if I've been so diligent with it then where did this come from? I've  been a vegetarian practicing the mediterranean diet for 40 years, exercise every day, do sudoku and other brain activities, take a tsp of cod liver oil every day, and have kept social. So what the heck!? Doesn't mean I'll stop doing it all but I just don't get it. Maybe if I hadn't been doing this I would have gotten it earlier.

I have to admit the hardest one right now is the socialization and if it wasn't on the list I don't think I would be as motivated to keep doing it. I find it rather natural to withdraw from people because I don't want them to see me in a brain fog. So now when I go out of the house to do anything I call it my 'social experience for the day.'

LoL  You gotta keep your sense of humor!   


Willow
Posted: Saturday, February 4, 2012 6:37 AM
Joined: 1/20/2012
Posts: 43


Hi Judy V! I live in Vermont and the nearest testing place is Burlington which is about 45 minutes away for me. I appreciate your concern about me having to wait but then I also think maybe they'll actually see it by then. I know I'm catching whatever it is in the early stages and hope I'm not too early for it to be found. It's kind of crazy to think that way but I hear of so many people having to wait so long for it to actually become known.

Thanks for your support!  


SteveSanJose
Posted: Saturday, February 4, 2012 1:12 PM
Joined: 1/3/2012
Posts: 189


 Willow - Some doctors who are just family doctors, are really not in tune with Alzheimer's. The type of insurance you have, also hinders the diagnosis of Alzheimer's, especially if you are under 65, where Alzheimer's is more rare. A numerologist, psychiatrist, or genealogy specialists are best. You could see a psychiatrist, at a local nonprofit organization, without a referral. Do you do luxury, with your insurance, of changing doctors? Living in a small city is also more difficult for person with any disability, due to less services. That's why I moved to San Jose, of big-city, from a smaller near by city,

Nurse


JAB
Posted: Saturday, February 4, 2012 4:05 PM
Joined: 11/30/2011
Posts: 740


Willow wrote:
The Best Practices is what I've practiced my whole adult life and not to knock it but if I've been so diligent with it then where did this come from? I've  been a vegetarian practicing the mediterranean diet for 40 years, exercise every day, do sudoku and other brain activities, take a tsp of cod liver oil every day, and have kept social. So what the heck!? Doesn't mean I'll stop doing it all but I just don't get it. Maybe if I hadn't been doing this I would have gotten it earlier.
 

 

 Maybe.  And maybe you don't have Alzheimer's at all.  Maybe you have a thyroid hormone deficiency, or vitamin D or B12 deficiency, or an infection that's caused some inflammation in the brain, or an autoimmune disorder, or normal pressure hydrocephalus, or or or.

 

Don't jump the gun.  Find a doctor who can get the ball rolling for you, by doing the standard tests that any qualified doc would do, such as a thorough blood workup, EKG, EEG, brain imaging (MRI or CT scan), etc.  You shouldn't have to wait long at all to get those done.

 

Typical tests for diagnosing disorders that cause dementia-like symptoms:
http://www.alzcompend.info/?p=127



Mimi S.
Posted: Saturday, February 4, 2012 6:27 PM
Joined: 11/29/2011
Posts: 7027


And hopefully that's what you'll get in Burlington.

 

Please do get the book I wrote about. It will explain lots about testing and the things JAB wrote about: things that mimic dementia but aren't.

I have never said that the Best Practices prevents dementia. I do claim that it is possible to either delay the onset or slow down the decline once you have it. Several studies have shown this much is true, but more work is needed.

 

And if it's not something else mimicing  dementia, then possibly without your life style, the problem might have shown up even earlier.

 

Do stay with us.


Iris L.
Posted: Saturday, February 4, 2012 9:32 PM
Joined: 12/15/2011
Posts: 18354


JAB and Mimi said what I wanted to say.  So I'll add, you didn't tell us your age, Willow, but the biggest risk factor for AD is advancing age.  But you may not have AD.  .  John 891 gave us a good report that his memory problems and depression were hormone related.  He improved after a medication was discontinued.  If you are on any medications and nutritional supplements, check them at www.rxlist.com for memory loss as a side effect. 

 

  

  

  

Please read about the diagnostic process and keep coming back to let us know how you are doing and what is happening with your evaluation. 

 

 

 

Iris L. 


Geegee
Posted: Sunday, February 5, 2012 11:43 AM
Joined: 11/29/2011
Posts: 514


Willow,

Welcome!  I answered you on your other thread about your PC experience.  My dear friends have given you the sound advice (above) that you need.


  Yes, I wonder along with Iris concerning your age.


Sorry for the difficulties you are going through now, I hope that in some way we can all help you when you need understanding and support.  


Know that you are not alone in many of the experiences you will have.  Someone here will have had a similar encounter.  Sometimes that's comforting 


and keeps us from going nuts!  



Willow
Posted: Monday, February 6, 2012 9:39 AM
Joined: 1/20/2012
Posts: 43


Iris wrote: you didn't tell us your age, Willow, but the biggest risk factor for AD is advancing age.  

 

Hi Iris, I'm 59 so I still consider myself a spring chicken!  LoL  


Ttom
Posted: Monday, February 6, 2012 9:54 AM
Joined: 11/29/2011
Posts: 182


Willow wrote:

 I'm 59 so I still consider myself a spring chicken!  LoL    

 

Please get yourself into a Neurologist for testing ASAP.

JAB
Posted: Monday, February 6, 2012 11:40 AM
Joined: 11/30/2011
Posts: 740


Well, then, dear Spring Chicken, you are at just the right age for some of the problems that can mimic dementia, such as hypothyroidism, to start up.

 

Get the testing started.  And let us know how you're doing.


Iris L.
Posted: Monday, February 6, 2012 12:39 PM
Joined: 12/15/2011
Posts: 18354


Willow wrote:

I haven't had my testing yet and am waiting since there's such a waiting list at this time. I was told from 4 - 6 months. 

 

My daughter is freaking out that there's a problem and doesn't want to believe it. Since she lives in another state it's easier for her not to see the changes in me.

 

 

 

Why is there such a long wait?  4-6 months is not acceptable, although I waited longer. 

 

Willow, when I first talked with doctors, they were in denial.  It took about 15 MONTHS from the time I first raised concerns with the internist until I got an appointment with the neurologist.  When I saw the neurologist I brought him a pile of mail and financial material that I was having trouble dealing with.  At first he told me my memory problems were "subjective" meaning there was no evidence.  The pile of unopened mail and overdue and late notices were my evidence!  I was so distraught after that visit I thought I would be better off dead.   

 

Fortunately, I met an educator from the Alzheimer's Association who was a speaker at the monthly Family Caregiver Support Group that I was allowed to attend.  She encouraged me to persevere with the neurologist and to insist on a thorough evaluation.  The rest is history. 

 

The point is that doctors often don't take patients with memory loss or cognitive change complaints seriously.  This is unfortunate, considering all the conditions that mimic or even cause dementia that are TREATABLE if caught in time.  Sometimes we have to push them to do what they should already be doing. 

  

 59 is young.  I suggest you start to keep a journal of symptoms that you notice.  How are you doing with your Activities of Daily Living and your Incidental Activities of Daily Living?  These are driving, paying bills, handling finances, cooking, doing housework and laundry, using the telephone.  Are you losing things? You already told us you had trouble with using the stove.  

 

Continue your Best Practices that you are already doing.  Let us know of your progress. 

 

Iris L. 

  



 
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