RSS Feed Print
New to site.
pony5alive
Posted: Sunday, February 19, 2012 7:32 AM
Joined: 2/17/2012
Posts: 3


Just wanted to say hello.  I am new to the site and was diagnosed 4 weeks ago with EOAD.  Its been a battle and just wanting to touch base with others with my condition.  I'm 49, married and have to adult children.  There support and God;s love has sustained me thus far.  My fears grow daily as new setbacks arise.  Thanks for taking time to read this.  I will check back multiple times during the day to see if anyone wants to talk.
Mimi S.
Posted: Sunday, February 19, 2012 3:41 PM
Joined: 11/29/2011
Posts: 7035


Hi Pony5alive,
Welcome to our world. We're so glad you found us, but so sorry for what brings you here.

Yes, it's a shock! Did you have an inkling something was wrong? Are you employed?

Unfortunately, there are too many who are diagnosed so young. You will have much company.
Read everything you can on line. Find Understanding the Dementia Experience and Coach Broyle's Playbook.
From your library, I'd ask for Doraiswamy and Gwyther, The Alzheimer's Action Plan.  Also ask for Lisa Genova's, I'm Still Alice. Be warned, several of my Early Onset friends found it too difficult to read. It is fiction, but one needs to keep reminding oneself that it is. If it hits too close to home, shut the cover.

Look up Best Practices. I just wrote a long description on another newbie's post. If I try to find it, I'm sure to lose everything I already wrote. 

Do keep coming back. You'll get to know us.


Iris L.
Posted: Sunday, February 19, 2012 5:20 PM
Joined: 12/15/2011
Posts: 16181


Welcome to our online support group, pony.  You will find many members here to support you and to answer your questions.  There is a wealth of knowledge among the members here. 

 

I have been diagnosed as cognitive impairment nos, "not otherwise specified."  This means I have the features of dementia but from another disease, in my case which is systemic lupus.  I also have low thyroid, diabetes, hypertension, sleep apnea, and depression.  I have been on Exelon patch and Namenda for almost three years along with my other medications.  Those two have helped my cognition a great deal. 

 

In addition I follow Best Practices.  This means eating the Mediterranean diet, including anti-oxidants and olive oil, vigorous exercise, stimulating brain activity, and socialization.  These all help to enable us to function better and possibly slow the progression of decline. 

 

The Alzheimer's Association has lobbied to get EOAD added to SSDI as Compassionate Allowance so that patients will be fast tracked to receive disability benefits.  Have you applied for SSDI? 

 

Please read as much as you can and continue to post.  I'm sure you have many questions.  We are here for you.  We are here for each other. 

 

Iris L. 


Myriam
Posted: Sunday, February 19, 2012 7:10 PM
Joined: 12/6/2011
Posts: 3326


Hi, Pony5Alive! So great you've come here. Tell us more about you. How did you know you had a problem? Are you safe? Do you have a good doctor? 

 

 


pony5alive
Posted: Sunday, February 19, 2012 8:23 PM
Joined: 2/17/2012
Posts: 3


Thanks for welcoming me.  I first realized I was having memory issue's about 2 years ago.  Everyone told me it was normal and I was exagerating.  December of 2010 I was written up on the job for forgetting to complete tasks properly.  I'd been doing them for 3 years without a glitch.   In late December  2010 I was written up and again in early January 2011.  When I was written up in January I was told that if it happened again I could be terminated.  All three write ups were for the same kind of errors.  I was vindicated about my memory issue's,  but still did not know why.  I left my position in the hospital in late February. I was on lamictal for my depression and was having some side affects to it so thats what my wife and I thought was the problem.  Well here I am 1 abnormal Pet Scan, EEG, and 2 Neuropsych tests later and now have a diagnosis of dementia, EOAD type.  I still am able to drive to familiar places.  Mainly local.  I won't drive anywhere that I have never been to before.  Too much anxiety.  I don't do restraunts or busy places.  I have no filter for sounds.  Every voice and noise sounds the same and I cannot tell the diference.  My wife is a nurse. She has done geriatic nursing for 22 years.  She is currently a nurse consultant for a nursing home company.  She know's what the warning signs are and checks up on me constantly.  She is on the road with her job so I am home alone during the week but haven't had any trouble.  My daughter lives 15 minutes from me and visits often during the week.  I have an excellent Neurologist here in Charllote NC.  He is very well known to the Western Carolina Alz assoc.  That made me feel good when they told me that.  I have just been informed (Wed) that I am approved for Social Security Disability.  My first payment will be in March.  I do not know about Medicare and all that.  I haven't recieved any paperwork.  I hope I will get that this week.  I was fast tracked.  I applied in August and have already recieved my back pay.
Myriam
Posted: Sunday, February 19, 2012 9:25 PM
Joined: 12/6/2011
Posts: 3326


Sound like you're right on track and blessed to have a spouse with health care background and a good doctor...and that you're getting all your ducks in a row.  Have you and your wife sought the assistance of an elder law attorney to get the necessary legal documents in place?  If not, you may want to find one in your state by going here: 

 

www.naela.org  


Lisa428
Posted: Sunday, February 19, 2012 11:46 PM
Joined: 12/5/2011
Posts: 795


Hi pony5,

 

Welcome to the AD/Related dementia's message boards.  I'm sorry about your diagnosis but I am glad you've found us.

 

There are a lot of really great people on these boards that will help and support you.  The best advice I can give you is to learn as much as you can about your illness.  Follow the advice you have already been given (especially about getting your legal and medical POA).

 

It's much easier to do it now while you are in the early stages.

 

You should visit your Local AD Assn. for advice and help.

 

We have a 24/7 toll free helpline is you need something right away.  800-272-3900.  There are many wonderful people there to assist you and your wife.

 

It must be great being married to a nurse.  Is she an RN?

 

I was an RN until I was forced to retire due to my EOAD.  I still miss it!

 

Please, share more about yourself.  Perhaps you can get your wife to join our "Caregiver's Forum."  It would really help her.

 

Again, welcome.  You are NOT alone.  We are here for you.

 

Peace and Hope,

Lisa


pony5alive
Posted: Monday, February 20, 2012 2:41 PM
Joined: 2/17/2012
Posts: 3


I did a living will and dual power of attorney while I was working at the hospital.  However, after finding out I may have Alz. my wife and I consulted an elder attorney and he informed us that what I had already done would not be recognized in court.  So we are planning to go back and have everything done with an attorney.
Iris L.
Posted: Monday, February 20, 2012 4:47 PM
Joined: 12/15/2011
Posts: 16181


pony, you say you worked in the hospital.  What did you do?  I was a pediatrician. 

 

Iris L. 


younghope1
Posted: Tuesday, February 21, 2012 7:28 AM
Joined: 12/5/2011
Posts: 127


Welcome Pony5! So sorry for what has brought you here, but even amongst the turmoil that is going on here right now, WE ARE a supportive community. So, please don't get discouraged and go away.

 

My name is Tracy and I have Pick's disease and am 47. I was orginally diagnosed with EOAD in 2002, but over time that changed as it does with many that are diagnosed inthe early stages of the disease. I think that is part of the reason that doctors aren't so ready to give a diagnosis early as it could truly be anything from depression to a type of demenita.

 

Even though my post number looks low, it is wrong, i have been a member here for a long time.

 

I like you have been sustained through my faith and my now 17 year old son. I have been an Advocate for many years but am slowing down due to the disease. I still keep my faith and journey on. Hope you can do the same.

 

Tracy


Lisa428
Posted: Wednesday, February 29, 2012 8:05 PM
Joined: 12/5/2011
Posts: 795


Hi Pony5,

 

How are you?  Haven't heard from you in a while.  Just checking in to say hello.

 

 

Please, write when you can.

 

Peace and Hope,

Lisa


SteveSanJose
Posted: Thursday, March 1, 2012 12:40 PM
Joined: 1/3/2012
Posts: 189


I have EOAD. First I had an MCI, at age 60. Tt age 61, I was upgraded to EOAD, after more memory testing, Pet Scans, and MRI's. While I no longer drive a car, or work; I still keep busy every weekday. This gives me a I am still working feeling, improves my health by keeping busy, and gives me a great feeling of satisfaction. I go to ADHC, Sr Centers, and Peer groups. I find the that I can do most things I used to do, but in a different way. I went through a adaptive technology program, and it was very help full. I use things like GPS's for navigation. Use all the resources you can. Places like your local chapter, and the other people on this board that are going through the things you are going through. They have have found different ways to solve problems, and are willing to share.

.Classifieds..