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Four years on Exelon patch this month
Iris L.
Posted: Friday, May 3, 2013 1:09 AM
Joined: 12/15/2011
Posts: 18342


So far, so good.  I'm struggling, but I manage to live independently. 

The neurologist told me I did not have to return to him but the PCP, a family medicine doctor, refused to refill the prescription.  So the neurologist agreed to see me once a year to refill my prescription for Exelon patch.

Often I wonder if I still need Exelon but my memory still has "glitches".  I still have trouble with my executive functions.  My interest in reading is diminishing.

I'm also taking Namenda. 

My diagnosis is cognitive impairment nos.

All of my life has been of an academic nature, so reading has always been of prime importance to me.  But I am trying to learn to enjoy my life with less reading.

I'm so glad these message boards are here for me to learn and for support.

Addendum:  The most common areas of attention for dementa patients are driving, cooking and taking medications.

My problems are dealing with mail, finances, correspondence and reading.  Also making plans for the future.

Iris L.


Mimi S.
Posted: Friday, May 3, 2013 9:07 AM
Joined: 11/29/2011
Posts: 7027


Iris, You know that the only way to know if your meds are working is to stop for a few montrhs. Are you deteriorating faster than before? Unfortunately, if the answer is yes, resuming the meds will not take you back to where you were when you started.

So, I'd rather assume they are working and keep taking them.

You need some kind of a geriatric manager to help with the other book keeping tasks. Can you afford it? i wonder if your local Office of the Aging would have someone. 

Ideally, you need someone who will charge a fee based on income (up to the regular charge) and that involves some agency that gets some kind of government assistance. 

Do you have a plan B for when you cannot safely live by yourself? 

Iris L.
Posted: Friday, May 3, 2013 1:29 PM
Joined: 12/15/2011
Posts: 18342


I had a Plan B but my Plan B told me I shouldn't talk about my memory because "everyone has senior moments".

So for now, I don't have a Plan B.

 

I've worked with three geriatric care managers.  Now I'm working with a geriatric social worker.  They don't handle bills.

Iris L.
 


Myriam
Posted: Friday, May 3, 2013 10:53 PM
Joined: 12/6/2011
Posts: 3326


Iris, I'm in awe of you.  You have been dealing with this for years, but it appears you have remained independent to a great extent.
Iris L.
Posted: Saturday, May 4, 2013 12:00 PM
Joined: 12/15/2011
Posts: 18342


Yes, Myriam, I'm still independent thanks to Exelon patch and Namenda, Best Practices, following the Flylady routines, and the advice and support from my fellow members here!

My big problem is that no one believes I have any problem, because in their eyes, I'm doing just fine!  I'm doing just fine given my level of cognitive impairments.

Iris L.

ilovemygrey
Posted: Tuesday, May 7, 2013 6:39 PM
Joined: 1/30/2013
Posts: 66


hi, how are u doing today? I am fine.. I also take Namenda too.. and I have Mild Cognitive Impairment too.. My Dr tried me on the Exelon patches 2 different times.. it made me worse.. now I am using Namenda , a trial pack to start out with.. I am now on the 2nd week.. after 4 weeks I will go back to my Dr to see if he will give me this drug all the time.. I hope it helps me.. Exelon did not.. that is great U had such great results with Exelon patches.. I guess all meds are not for everyone.. everyone is individual... hope U have a great weekend too.. Lisa Culp
Myriam
Posted: Tuesday, May 7, 2013 9:50 PM
Joined: 12/6/2011
Posts: 3326


Lisa, so glad to hear you're doing fine.  You are right that not every memory medication works for everyone. 

 

What's your favorite activity? 


Michelle 50
Posted: Wednesday, May 8, 2013 6:32 AM
Joined: 12/28/2011
Posts: 43


I am just wondering is there a best practice for EOAD as far as medications are concerned?
ilovemygrey
Posted: Wednesday, May 8, 2013 8:30 AM
Joined: 1/30/2013
Posts: 66


hi to m my fav activity is riding my bike. but, I also walk daily 45 min a day hope that is helping my brain... having MCI.. hope Your day is wonderful.. Lisa Culp
Mimi S.
Posted: Wednesday, May 8, 2013 8:41 AM
Joined: 11/29/2011
Posts: 7027


Michelle, 

The only part of Best Practices dealing with medications is #1. Take meds as prescribed.

Iris, by plan B, I mean what plans have you made for the time when/if you can no longer live by yourself. Have you investigated options for ALF? This is your opportunity to move anyplace your heart desires. 

And re non acceptance. Now that I am over six years from diagnosis those who (in their mind ) know more about the disease than I do tell me I was misdiagnosed. There is no real answer other than "time will tell."  

I know of the people I have met on this board who are holding back the progression.

I know of the people I have met at the DC Forum who are also progressing very slowly.

 Unfortunately, the experts haven't figured out a way to test us. If the Best Practices are a major part, there isn't usually much research money available, since drug manufacturers are the big suppliers of research funds. Of course, NIH might allocate some funds for a study. How would one conduct a scientific study of Best Practices?



You and I are much aware than any one else of what our deficits are. We have read and read. We know something is wrong. My neurologists says: I have no idea why you are doing as well as you are, but I don't plan to change a thing.

 


Geegee
Posted: Wednesday, May 8, 2013 8:42 AM
Joined: 11/29/2011
Posts: 514


Iris, congrats on your 4 years of assistance on Exelon Patch.  I salute you for having a Plan B in place.  Don't let any dissuade you from your research into appropriate facilities.  

 

What entity is saying your Plan B shouldn't be considered?   That's ridiculous advice!  Every person has to plan for their future and the eventuality of any problems.   Don't give up.  

 

Follow up with you area Aging Agency to see if they can assist you.  Call our Helpline for guidance.  

I've been on my meds now for  little over 3 years and I won't part with them.  Like Mimi said, if you stop them, it is proven that you cannot get back to that point of function if you try to start them back up.

 

For my PCP, I recently changed to a gerontologist that works with Dementia. Since I'm 66 and on Medicare, it was accepted. 

 

 I think you are younger than I am, but check on it.

 

Wishing you another 4 good years.  

(((( hugs)))))