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Genetics confusion
Alilynne
Posted: Thursday, September 19, 2013 11:40 AM
Joined: 11/30/2012
Posts: 11


My mom's paternal grandmother and her father had Alzheimer's but both had the disease in their 70's+. Mom was diagnosed at 54. None of her 3 older siblings have it. She did have a lot of loss/stress in her life which, in my opinion, contributed to an early onset.

Is anyone else in a similar situation? Could this be familial alzheimer's disease?

Lonna
Posted: Thursday, September 19, 2013 12:11 PM
Joined: 5/12/2013
Posts: 75


Let me guess, you're scared for yourself? My mom has EO dementia at age 61, and she has five brothers, all of whom are healthy. Her parents and grandparents did NOT have dementia, even those who lived to their 90s. My mother has suffered from anxiety, depression, poor self care, her entire life, which was exacerbated by not being able to cope with her divorce from my father, who left her for her best friend. She never thought to reinvent herself, socialized very little, has no friends and never challenged herself mentally or physically. She also ran a daycare for 37 years, meaning that her primary social interactions were with toddlers and babies. Do I think my mother's condition is due in part my behavior and lifestyle? Absolutely. Do I still get scared for myself? Every second of every day. Alilynne, you're normal to worry. But put your trust and energy in advocating and raising funds to find better treatment options and eventually a cure. I find turning tragedy into action has helped me immensely.
Myriam
Posted: Thursday, September 19, 2013 3:30 PM
Joined: 12/6/2011
Posts: 3326


My paternal grandmother and my father and 6 of his 12 siblings died with Alzheimer's. I have older cousins who had/have Alzheimer's. All began to show symptoms before the age of 55. So when I turned 60, I thought I was safe, but at the age of 62, I experienced my first symptom.  

 

 As a young woman, knowing AD was running in my family, I chose not to think or worry about it. I lived an amazing life, and since my diagnosis, I've chosen to continue to live an amazing life. I'm going to Kenya on safari next week! 

 

 


Lonna
Posted: Thursday, September 19, 2013 3:51 PM
Joined: 5/12/2013
Posts: 75


Myriam, you are an inspiration. What kinds of care were you able to get for your family members? My mom was just denied SSDI and Medicaid. I know if it happens to me, I want to be prepared financially.
Myriam
Posted: Thursday, September 19, 2013 5:24 PM
Joined: 12/6/2011
Posts: 3326


My mother cared for my father. I had 4 young children at the time (ages 2, 4, 6 and 8. I watched how heroically she cared for him while raising my younger brothers. For about 6 months, she also cared for my father's sister with AD. I wouldn't want to place any of my children in a position where they would have to care for me, so I've been investigating assisted living facilities that also have a nursing home component for IF or when the time comes. The only thing I would ask of my children is to check in to make sure I'm being taken care of properly. 

 

Of course, I hold hope that a cure or something to stop the progression will come along, soon. 


Iris L.
Posted: Thursday, September 19, 2013 7:27 PM
Joined: 12/15/2011
Posts: 18508


Lonna, why was your mom denied SSDI?  Was her application under Compassionate Allowances?

Iris L.

Harried1
Posted: Thursday, September 19, 2013 8:12 PM
Joined: 9/17/2013
Posts: 2


I agree stress is a trigger for so many illnesses - my husband's mom had AD but she also lost 2 children - so who knows, my husbands dr said it's mostly just crappy luck!
Iris L.
Posted: Thursday, September 19, 2013 9:00 PM
Joined: 12/15/2011
Posts: 18508


Myriam wrote:

 

  I lived an amazing life, and since my diagnosis, I've chosen to continue to live an amazing life. I'm going to Kenya on safari next week! 





Bravo, Myriam!

Iris L.

 

 



Lonna
Posted: Friday, September 20, 2013 8:42 AM
Joined: 5/12/2013
Posts: 75


Iris, we live in North Dakota, a state where "compassionate" does not exist. She was also denied Medicaid because her caseworker is an incompetent rube who told us she was $600 over the maximum asset level of $3000. She used figures from my mom's July checking account balance; as of today, mom has $200. I've got a local senator and county ombudsman on the case, but everything is just ... really crappy. Not only do I have to take care of her paperwork, I am her primary carer, which means I do all the cooking, cleaning, companioning, worrying, etc. Am I feeling sorry for myself? Yes.
Iris L.
Posted: Friday, September 20, 2013 8:26 PM
Joined: 12/15/2011
Posts: 18508


Lonna, I'm glad your local senator and ombudsman are on the case for your mom getting Medicaid and Medicare.  SSDI is a federal benefit and the degree of compassion of your state should not be an issue.

Don't let yourself get burned out, if you can.  Can your local chapter point you in the direction of resources and some relief?

Iris L.

Myriam
Posted: Friday, September 20, 2013 10:16 PM
Joined: 12/6/2011
Posts: 3326


If you haven't already done so, also contact your local area agency on aging for the services they provide. Here are a couple of websites for your state: 

 

http://www.nd.gov/dhs/services/adultsaging/ 

 

http://www.caregiverlist.com/North-Dakota/DepartmentOnAging.aspx 


Vita99
Posted: Saturday, September 21, 2013 11:12 AM
Joined: 9/4/2012
Posts: 469


Myriam I just wanted to add how inspiring it is that you are going on this lovely vacation.  Gives me hope that one day I too will be able to travel.  


 

My mom is naturally introverted, she enjoyed reading and television most prior to her cognitive problems.  She truly dreads going anywhere these days, although about 10 years ago she too wanted to travel.  It saddens me.  


Lane Simonian
Posted: Saturday, September 21, 2013 9:34 PM
Joined: 12/12/2011
Posts: 5158


How exciting!  Have a wonderful time in Kenya, Myriam.
Myriam
Posted: Saturday, September 21, 2013 11:10 PM
Joined: 12/6/2011
Posts: 3326


Thanks, though am a tiny bit concerned about the shootings in Nairobi today. I fly out Tuesday morning and my hotel for the first 3 days is near that location.

http://www.nytimes.com/2013/09/22/world/africa/nairobi-mall-shooting.html?pagewanted=all&_r=0


Iris L.
Posted: Sunday, September 22, 2013 12:25 AM
Joined: 12/15/2011
Posts: 18508


What a horror!  I just listened to Brian Suits on KFI 640 radio about this attack.  I'm waiting to hear the developments.

Iris L.

Iris L.
Posted: Monday, September 23, 2013 12:22 PM
Joined: 12/15/2011
Posts: 18508


Myriam, I hear that things are stabilizing in Nairobi.

Best wishes and traveling mercies on your trip.

Iris L.

Lane Simonian
Posted: Monday, September 23, 2013 3:06 PM
Joined: 12/12/2011
Posts: 5158


I was slow to learn of this story.  I am glad that things have begun to stabilize.  Safe travels, Myriam.
Myriam
Posted: Tuesday, September 24, 2013 1:34 AM
Joined: 12/6/2011
Posts: 3326


It's 11:30 p.m. and I'm finishing up doing laundry and my packing. Shuttle Express picks me up at 10:30 a.m. and I'll be on my way. Am taking my laptop with me, but don't know if I'll have internet connection while I'm on safari. If not, "see" you when I get back...and keep your spirits up! The alternative is such a bummer.

I'm traveling by myself, so wish me luck. Will meet up with my sister in Nairobi.


Iris L.
Posted: Tuesday, September 24, 2013 2:11 PM
Joined: 12/15/2011
Posts: 18508


You're on your way by now, Myriam.  Bon voyage!

Iris L.