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Making AD a friendly neighbor
SF Unforgettables
Posted: Friday, July 31, 2020 12:55 PM
Joined: 3/6/2020
Posts: 8


I haven't learned to embrace this disease quite yet.  I have learned how to make it a "friendly neighbor."  You can't live with this alone.  I make every day a new day.  

How do you live out your best days with this disease?  What keeps you going?  

We'd love to hear from you all.

San Francisco Early Stage Support Group


Iris L.
Posted: Friday, July 31, 2020 3:03 PM
Joined: 12/15/2011
Posts: 16563


My Memory Club has not met since February. It's been very hard not meeting.  

Iris


KawKaw
Posted: Friday, July 31, 2020 8:29 PM
Joined: 11/22/2019
Posts: 279


I am not certain I will be embracing this disease, but I do try to live my best life on a daily basis.

I have learned in the past couple years that I must be as kind and understanding to myself as I am of others around me, strangers and loved ones alike.

I practice not allowing mistakes, misplaced items or forgotten information impair my appreciation of being alive today.

I don't always succeed.  Sometimes forgetfulness frightens me.

I live much more in the present than I did before I became impaired.

There are joys to be embraced and I want to be open to them as much as I can be.


SF Unforgettables
Posted: Friday, August 7, 2020 12:56 PM
Joined: 3/6/2020
Posts: 8


Can your group meet via Zoom?  That is what we have been doing for our support group in San Francisco.  We can't wait until the day when we can all meet in person.  But a weekly zoom meeting has helped keep our spirits up, and keep us connected throughout this pandemic.

 


SF Unforgettables
Posted: Friday, August 7, 2020 12:58 PM
Joined: 3/6/2020
Posts: 8


Very good!  We think you are right on.  We try to do the same.

Where are you all located?

 


Iris L.
Posted: Friday, August 7, 2020 3:10 PM
Joined: 12/15/2011
Posts: 16563


No one has suggested that we meet on Zoom.  I don't know how to set Zoom up anyway.  


Iris


Pedalpusher4evver
Posted: Saturday, August 8, 2020 8:00 PM
Joined: 8/8/2020
Posts: 1


FFor those of you that have Alzheimer's, or a family member of the patient, how were you able to get proper diagnosis? No neurologist nor PCP wants to help me. My wife seees a lot of signs that I have it. But She's are not doing anything for me.. How did you get started?
Iris L.
Posted: Sunday, August 9, 2020 12:32 AM
Joined: 12/15/2011
Posts: 16563


Welcome pedalpusher.  Actually, getting a diagnos is a complicated process that takes place over a long time.  You can begin with an evaluation from your primary care doctor.  Take him or her a list of symptoms you have noticed and are concerned about.  The Alzheimer's Association has an article about "how to talk to your doctor."  Look for this on alz.com.  



The doctor should check for common medical causes of memory loss, such as hormonal deficiency or vitamin deficiency.  The doctor should review your medications, because many medications have memory loss as a side effect.  The doctor may request an MRI to look for a tumor or evidence of a silent stroke, or may order a sleep study to look for sleep apnea.  There are a few other tests that may be needed.



Read the entire Diagnosis section on alz.com. There is good information there.  Please come back and keep us updated.  Feel free to begin your own thread by clicking on "Add Topic" on the main "I Have Alzheimer's" page.  



Iris


SF Unforgettables
Posted: Friday, August 14, 2020 12:57 PM
Joined: 3/6/2020
Posts: 8


Dear Pedal Pusher,

We encourage you and your spouse to contact your PCP and insist on a thorough diagnosis.  You can always call the Alzheimer's Association 24/7 helpline 1.800.272.3900.

One member called the local university, that has a Memory and Aging Clinic, for a thorough diagnosis.  He had to volunteer to participate in clinical trials if needed.

We wish you the best in getting a diagnosis.  

We have found it to be a relief to finally know what is going on, and for our concerns to be taken seriously.

You can also look on the Alzheimer's Association for Principles for a Dignified Diagnosis.  

A large percentage of physicians do not inform their patients or care partners when someone has dementia.  

Sincerely,

The Early Stage Support Group in San Francisco

aka "the Unforgettables"