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Why go back to the doc?
1961
Posted: Thursday, May 9, 2013 11:33 AM
Joined: 6/1/2012
Posts: 15


My wife, younger onset, had an excellent question for me.  We were talking about our upcoming follow-up at our memory-care center and she said, "what's the point?  It is not like they are going cure me or anything."  She likes the doctor and he spends about 45 minutes just chatting with her.  She likes it when we leave, but she is right, nothing really changes.  She asked me if she would have to go through more memory tests because it just made her feel worse.  Another excellent point.  So here is my question:  for just follow-up appointments when there is no urgent matter, what do you try to get out of it?
lpn12659
Posted: Thursday, May 9, 2013 12:42 PM
Joined: 5/26/2012
Posts: 31


Dear 1961,

Never give up! I'm 53yrs. old and lost my job as a nurse a little over 2yrs. ago. After finally getting over my depression because of the diagnosis I go around bringing awareness about alzheimes ( esp young onset ) and try to raise money for alzheimers. I have a fundraiser bus trip to Cape May, Silent Auction, Restaurant fundraisers. I find this helps me out alot! It keeps my mind busy and I feel like I have a purpose in life now by helping others. And we really need money for research! I don't like the memory tests either, they do get upsetting. I see my Dr. every 3months. I'm on aricept23, namenda, and now axona - a prescription dietary supplement that I mix in vanilla pudding. I just started this 1 week ago but it is suppose to help with alzheimers. I try everything to keep on going and fight this horrible disease. Give up a fight and don't give in to alzheimers!


1Day@aTime
Posted: Thursday, May 9, 2013 1:09 PM
Joined: 8/26/2012
Posts: 257


My husband has said the same thing.  And he's also asked a long while back why he shouldn't just do something to end this whole thing.  I tell him that God isn't done with him yet.  I tell him it is what it is.  I tell him we aren't going to give up living, we are just changing how we live.  It's become quality vs quantity.  I know this reached him, because one day, when he saw me so upset over his disease, he told me, "a wise woman once told me "it is what it is" and that "God wasn't done yet".  God Bless!
Myriam
Posted: Thursday, May 9, 2013 1:12 PM
Joined: 12/6/2011
Posts: 3326


I think it's a good question to ask the doctor.  I see my doctor twice a year, but am involved in a three clinical trials/studies, which makes me feel like I'm doing something to help find a cure.  Have the two of you looked for a trial or a study in your area where she can get involved?
ffwife54@yahoo.com
Posted: Thursday, May 9, 2013 1:36 PM
Joined: 4/15/2012
Posts: 247


I was going to the Memory Clinic for 2 years then at my last visit my Dr said you have graduated and I don't need to see you for a year. I still get tested yearly because I want to know if I'm slipping. Do I get anxious and nervous as heck? Yes Do I suffer test anxiety? Yes. But I want to know where I stand,,,,maybe farther down the road I won't feel the same way, maybe the Dr will go back to 6 month visits but that will be then and this is now.

 

I have tried to get into research studies but am always turned down because I have B-12 anemia and The last response I got said "Yes, but from what I understand after reviewing your records, it is not likely. 

 

 Your testing shows “nonamnestic” MCI that is stable, with a history of B12 deficiency, and depression/anxiety. 

 

 The history of Vitamin B12 deficiency alone excludes you from the study.  I’d love to have you participate, but you do not meet our strict eligibility criteria.

 

 So I remain frustrated and wishing I could do more to help with research but can't at least for now

  

 


dayn2nite
Posted: Thursday, May 9, 2013 1:46 PM
Joined: 12/18/2011
Posts: 3097


If she's decided against taking memory medications, I also see no point.  The only reason I took my mother back was to get refills of medications (because they refused to refill unless we did), but when we stopped I thought it was pointless to go back.

If the visits and testing make her feel bad, don't go.  Contrary to some opinions, they have nothing to offer her right now and nothing in the forseeable future either.

Let her enjoy her life.
Queens artist
Posted: Thursday, May 9, 2013 6:46 PM
Joined: 8/17/2012
Posts: 12


If your wife on meds for Alzhemier's it's important for her to see her neurologist. The doctor would want to determine if the meds are effective and also see how she is doing physically. It a great opportunity for you to get new information and advice that will help you better understand the disease. Make it a special day out go to lunch and enjoy.
Mimi S.
Posted: Thursday, May 9, 2013 6:53 PM
Joined: 11/29/2011
Posts: 7027


I am answering as an older person with Alzheimer's. 
The answer is the bracelet that is always on my wrist:
A REASON FOR HOPE
I strongly believe that my involvement on Best Practices is what has kept me in Early Stage for over 6 years.
However, it is also possible that my internist, who works closely with my neurologist, has had a role. There are meds I take to control high blood pressure and cholesterol.  There are meds I take to correct my thyroid problem.  If I were not going regularly to the internist, these problems would not have been detected and medicated.  My PCP did not find them. 
So I continue my appointments and I continue fighting.

Queens artist
Posted: Thursday, May 9, 2013 6:54 PM
Joined: 8/17/2012
Posts: 12


I have early onset Alzhemier's and I try to keep active and engaged everyday. Granted there are some days that are harder then others but most days are good. I am on Acripet and Namenda and find that they have made a real difference in my motivation and has decreased my apathy. Both of those symptoms were the most difficult.i do go to neuro rehab every week and I learn things to exercise my brain. I exercise everyday and eat well.
Queens artist
Posted: Thursday, May 9, 2013 7:03 PM
Joined: 8/17/2012
Posts: 12


That's positive that your MCI is stable that means you remain at baseline.My MCI converted to AD. It's important to go through the neuropsychological testing every year to see if you are at baseline. Exercise, good nutrition and social interaction have been shown to be helpful for people with MCI.
1961
Posted: Friday, May 10, 2013 5:06 AM
Joined: 6/1/2012
Posts: 15


This last time I told the doc I wanted to change from every 6 months to once a year. I got no push back and she said that would be fine. Ironically I almost wish the doc saw a reason/need to be there.
1961
Posted: Friday, May 10, 2013 5:17 AM
Joined: 6/1/2012
Posts: 15


Myriam wrote:
I think it's a good question to ask the doctor.  I see my doctor twice a year, but am involved in a three clinical trials/studies, which makes me feel like I'm doing something to help find a cure.  Have the two of you looked for a trial or a study in your area where she can get involved? 

I have not seen one locally that she qualifies for.  Primarily due to age.
1961
Posted: Friday, May 10, 2013 5:18 AM
Joined: 6/1/2012
Posts: 15


1Day@aTime wrote:
My husband has said the same thing.  And he's also asked a long while back why he shouldn't just do something to end this whole thing.  I tell him that God isn't done with him yet.  I tell him it is what it is.  I tell him we aren't going to give up living, we are just changing how we live.  It's become quality vs quantity.  I know this reached him, because one day, when he saw me so upset over his disease, he told me, "a wise woman once told me "it is what it is" and that "God wasn't done yet".  God Bless!
Bingo.  Same here. Almost verbatim. Thanks.
ilovemygrey
Posted: Friday, May 10, 2013 6:54 AM
Joined: 1/30/2013
Posts: 66


hi, I am lisa Culp and I have MCI, Mild Cognitive Impairment, and I also take Namenda.. I am on a trial pack starting the 3rd week of pills.. I was on the Exelon patches, but, accord to my husband , my 18 year old daughter, and also my girlfriend.. they all said it made me worse.. so, now I am only on Namenda.. how does that differ when your Dr gave you more meds? thanks so much.. hope to chat more soon.. Lisa Culp
1961
Posted: Friday, May 10, 2013 7:06 AM
Joined: 6/1/2012
Posts: 15


Queens artist wrote:
That's positive that your MCI is stable that means you remain at baseline.My MCI converted to AD. It's important to go through the neuropsychological testing every year to see if you are at baseline. Exercise, good nutrition and social interaction have been shown to be helpful for people with MCI.
I am not so sure she is maintaining, but I don't worry about that. It is what it is, right?  Every few months I look back at the "stages" of the illness.  Sometimes I am certain it is four.  Other times I don't even see three. A lot has to do with stimulus from stressful situations. When she is comfortable at home or a very familiar restaurant, things are fantastic. Happy.  When a stressor is introduced, basically anything new, she has a bad day.  And when mom is unhappy, everybody is unhappy   That is hard on the boys, but by the next day things are fine again.   We have done two neuropsychology tests -God bless her for going through it.  Further MRIs seem more of a curiosity factor than anything useful.

1961
Posted: Friday, May 10, 2013 7:09 AM
Joined: 6/1/2012
Posts: 15


ilovemygrey wrote:
hi, I am lisa Culp and I have MCI, Mild Cognitive Impairment, and I also take Namenda.. I am on a trial pack starting the 3rd week of pills.. I was on the Exelon patches, but, accord to my husband , my 18 year old daughter, and also my girlfriend.. they all said it made me worse.. so, now I am only on Namenda.. how does that differ when your Dr gave you more meds? thanks so much.. hope to chat more soon.. Lisa Culp

All we have done is go from Aricept 5 mg to Aricept 10 mg. I have not gotten the feeling it has not helped the memory, but it makes her happier and more active. That is worth it. 


Mimi S.
Posted: Friday, May 10, 2013 8:52 AM
Joined: 11/29/2011
Posts: 7027


Hi 1961,
I hope you and your wife are also participating in the Best practices.
Many of us with the disease, who post on these boards, credit our longer stay in the Early Stage to our very active participation in the Best Practices.

1961
Posted: Saturday, May 11, 2013 6:59 AM
Joined: 6/1/2012
Posts: 15


Mimi S. wrote:
Hi 1961,
I hope you and your wife are also participating in the Best practices.
 
Many of us with the disease, who post on these boards, credit our longer stay in the Early Stage to our very active participation in the Best Practices.
I wish I could say yes. She is not interested.  I'd like her to at least join here.
ilovemygrey
Posted: Saturday, May 11, 2013 7:05 AM
Joined: 1/30/2013
Posts: 66


hi, I am on Namenda for about almost 1 mo now.. I am going back to my neurologist to see if he can give a script for this.. I am hoping it helps me.. I am going to ask my h , my 18 year old daughter and my girlfriend to see what they say.. to see if they think it is helping me. you on Namenda too?? how is it helping U?? thanks so much for any info on Namenda.. Lisa Culp
1961
Posted: Sunday, May 12, 2013 3:18 PM
Joined: 6/1/2012
Posts: 15


ilovemygrey wrote:
hi, I am on Namenda for about almost 1 mo now.. I am going back to my neurologist to see if he can give a script for this.. I am hoping it helps me.. I am going to ask my h , my 18 year old daughter and my girlfriend to see what they say.. to see if they think it is helping me. you on Namenda too?? how is it helping U?? thanks so much for any info on Namenda.. Lisa Culp

She is not taking Namenda, but Aricept seems to be helping her attitude about life in general.  Much happier. My son does not feel it helps her memory at all and he is a good barometer for me (as a teenager he is quick to see that his own needs are attended to).