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Need a doctor and advice for my mom
NancyB
Posted: Friday, January 13, 2012 12:11 PM
Joined: 1/13/2012
Posts: 3


Hi everyone, my name is Nancy and I'm a 35 year old mom living in NW Arkansas. My mother, who is 55, was diagnosed with EOAD in October. She was initially diagnosed with mild cognitive impairment based on the basic verbal tests, and after 3 or 4 visits the doctor upgraded the diagnosis. She's had some episodes that definitely indicate dementia, but I am concerned that her doctor rushed to the diagnosis. My mother is a lifetime heavy smoker, has diabetes, and has a history of mini-strokes. When I asked her doctor about the possibility of vascular dementia, he brushed me off, but it seems very likely to me that VD is at least one component of what's happening to her. I think she probably has both EOAD and VD.

 

I would very much like to find another doctor for us to work with. My mom and dad agree but would like me to try to find someone. I'm hoping to find someone who is agressive and optimistic in their treatment of dementia, and who will take the possibility of vascular dementia being at least part of the problem seriously. It would be fantastic to have someone specializing in patients as young as her as well.

 

So, I guess I have two questions. First, can anyone here recommend a doctor that you think could help us? We are within driving distance of Little Rock, Tulsa, Kansas City, Oklahoma City, Dallas and St. Louis, but we'd be willing to fly if we have no other options.

 

Second, I guess I would just like any other advice you can give. Are there books we should read? Activities or habits that she should try to introduce? I'll take all the information I can get. Thank you so much for any responses--I am so relieved to have found this forum!


kate4450
Posted: Friday, January 13, 2012 2:20 PM
Joined: 12/7/2011
Posts: 11


Nancy B.  So sorry to hear about your mom.  Getting to a correct diagnosis is a long road and includes many tests.  There is a regional memory diagnostic center at the University of Washington in St. Louis MO.  It was one of 5 recognized in the nation for its work on Alzheimer's disease but unfortunately, I can't remember what site I was reading that recognized it!

 

If you want more information, their website is www.memoryloss.wustl.edu

I can't give you a recommendation one way or another because I'm not a professional but I had considered going there until I found out that my own state held one of the regional centers also. 

 

Others will have book recommendations for you and also recommendations on how to find doctors.  I hope this helps.


Ttom
Posted: Friday, January 13, 2012 3:26 PM
Joined: 11/29/2011
Posts: 182


NancyB wrote: .... mom living in NW Arkansas. My mother, who is 55,  When I asked her doctor about the possibility of vascular dementia, he brushed me off, but it seems very likely to me that VD is at least one component of what's happening to her. I think she probably has both EOAD and VD.

 

 

So, I guess I have two questions. First, can anyone here recommend a doctor that you think could help us? We are within driving distance of Little Rock, Tulsa, Kansas City, Oklahoma City, Dallas and St. Louis, but we'd be willing to fly if we have no other options.

 

Second, I guess I would just like any other advice you can give. Are there books we should read? Activities or habits that she should try to introduce? I'll take all the information I can get. Thank you so much for any responses--I am so relieved to have found this forum!

 
 

Find an attorney

http://www.naela.org/ 

 
 

A durable POA is advised to protect your assets.

Power of Attorney info

http://www.alznyc.org/caregivers/legalplanning.asp 

 

Iris L.
Posted: Friday, January 13, 2012 9:06 PM
Joined: 12/15/2011
Posts: 16234


Welcome to the message boards, Nancy.  Your Mom has several risk factors for vascular disease which can compromise the blood flow and the oxygenation to her brain.  Her story sounds like mine.  You must work on her KNOWN risk factors, such as heavy smoking, diabetes, and mini-strokes. 

The doctor must search for and rule out other causes of memory loss, such as vitamin deficiency, hormonal imbalance, chronic infection, such as Lyme disease, and mental disorders such as  depression.  Your Mom needs a full evaluation.  You can look for an Alzheimer's Disease Research Center, since you are willing to travel.  If you call the 24 hour Alzheimer's Association Helpline at 1-800-272-3900, they can direct you to a center near you.

A good book to use as a reference for diagnostic procedures is The Alzheimer's Action Plan by P. Murali Doraiswamy, M.D. and Lisa P. Gwyther, M.S.W., both at Duke University in North Carolina.

 

Did the doctor start your Mom on any medications?  Another big cause of mental decline is drug side effects and drug interaction.  Check out all of your Mom's medications and search for memory loss as a side effect.

Our members can post on any of the message boards.  You will find more caregivers on the Caregiver board.   Keep reading and post whenever you have a question or concern.

Iris L.


JAB
Posted: Saturday, January 14, 2012 10:30 AM
Joined: 11/30/2011
Posts: 740


Hi, NancyB, welcome to the boards.

Organizations with expertise in early-onset dementia:
http://www.alzcompend.info/?p=264

Iris mentioned Alzheimer's Disease Research Centers.  There is a list of those at:
http://www.alzcompend.info/?p=237

Other places to consider are the so-called "memory disorder centers". There's a partial list at:
http://www.alzcompend.info/?p=14

Smoking, diabetes, and mini-strokes are all strong risk factors for Alzheimer's as well as for vascular dementia (VaD).  So-called "mixed dementia", which is a combination of AD and VaD, is very common.  Perhaps your mother does have mixed dementia ... but the treatment would be pretty much the same.

The very best things you can do for her, no matter what is causing her symptoms, are to get the smoking stopped, and to treat the diabetes and cardiovascular problems.

Information on medicines for AD:
http://www.alzcompend.info/?p=244

There is also a new, prescription-only "medical food" that many of us have found to be beneficial to our loved ones, "Axona"
http://www.about-axona.com


There are other things you can do to help slow down the development of symptoms for AD, VaD and/or mixed dementia, including:

(1) Sticking as closely as you can to a Mediterranean diet.
Basically, it involves:
- High intake of vegetables, legumes, fruits, and cereals
- High intake of unsaturated fatty acids (mostly in the form of olive oil)
- Low intake of saturated fatty acids
- Moderately high intake of fish
- Low-to-moderate intake of dairy products (mostly cheese or yogurt)
- Low intake of meat and poultry
- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meals

To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.

Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)

Avoid hydrogenated fats and trans fats like the plague.

(2) Lots of physical exercise.

(3) Lots of exercise for the brain -- activities that involve learning something new.  I've seen some reports that learning new things coupled with using a computer can be particularly helpful.

(4) Socialization, doing things with friends and family.

(5) Plenty of rest.

(6) NO SMOKING!!! and avoid air pollution as much as possible.

(7) Do whatever you can do to minimize stress in your loved one's life ... and help your loved one learn and practice stress reduction techniques.


Reading assignments:

The Newly Diagnosed article helpful:
http://www.alzcompend.info/?p=121

Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience".

Coach Broyle's Playbook:
http://www.alzheimersplaybook.com/
The link for the free .pdf is in the upper right-hand corner of the page

NIH's National Institute on Aging has a very nice booklet, Alzheimer's Disease: Unraveling the Mystery" that explains the basics of what is known (and not known) about AD in layman terms.  You can download the .pdf at:
http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-unraveling-mystery
or read sections of the booklet there.

Jolene Brackey's book, "Creating Moments of Joy".  It's great -- full of very practical, simple advice on how to make our loved ones feel loved, happy, and safe: 
http://www.enhancedmoments.com/
Click on "Products" and scroll down.



This post has been edited by the ALZConnected Moderator on February 14th, 2012. 









JAB
Posted: Saturday, January 14, 2012 10:38 AM
Joined: 11/30/2011
Posts: 740


Oh -- I meant to add my invitation to Iris', to also join us on the Caregiver Forum.  And we'd be very pleased if your father would join us (or at least lurk) on the Spouse/Partner Caregiver Forum.  We have quite a few members whose spouses/partners have early-onset dementia.

 

This particular forum is primarily for our members who have early-onset dementia themselves ... although, as you can see, many of us caregivers also read and post here.


Woody's Mom
Posted: Wednesday, January 25, 2012 1:34 AM
Joined: 12/23/2011
Posts: 1


Read Dr. Mary Newport's book, and try giving your Mom coconut oil. Google "coconutketones". Also, don't let the doctor intimidate you... if your Mom has had mini-strokes, then, yes, THAT should be taken into consideration.
younghope
Posted: Wednesday, January 25, 2012 7:28 AM
Joined: 1/9/2012
Posts: 27


Hi Nancy, my name is Tracy and I have Frontal Temporal Lobe Dementia or FTD. Anyway, I was diagnosed at 38 years old. I live in Buffalo, just outside Springfield, Mo. I have a neurologist that is the BEST in Southwest Missouri, probably all of the Midwest to be honest. If you can contact the Neurology group at the Ferrell Duncan Clinic in Springfield, you may have some luck. My doctors name is Dr. Quinn, there is also several others in that group I would recommend if you can't get into see him. Ask about Dr. Scott Duff, he was my mother's neurologist. Just google Ferrell Duncan Clinic in Springfield and that should bring up the number for you.  

 

Tracy

 


NancyB
Posted: Wednesday, January 25, 2012 9:29 PM
Joined: 1/13/2012
Posts: 3


Thank you all so much! We are meeting with my mom's current doctor tomorrow, and hopefully that will help us gauge where to go from here. I'll post when I know more.
NancyB
Posted: Wednesday, January 25, 2012 9:29 PM
Joined: 1/13/2012
Posts: 3


Tracy, Springfield is a very reasonable drive for us, so that would be great. Thank you so much for the recoomendation--I will look him up!
JAB
Posted: Thursday, January 26, 2012 1:27 PM
Joined: 11/30/2011
Posts: 740


Coconut oil for someone with diabetes and a history of mini-strokes?  Not hardly.  That would be about the worst thing possible to do.  That book is so full of ... unmitigated horse manure, it's pathetic.