Introduction

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
IrishGirl
New User
New User
Posts: 2
Joined: Sun May 27, 2018 11:57 am

Introduction

Postby IrishGirl » Sun May 27, 2018 12:02 pm

Hi!
I found this site after reading Dr. Bredesen’s book which I was prompted to read because I began seeing signs of cognitive decline in my 76 year old father about 2 years ago. I urged my dad to visit a doctor over the next 18 months. These discussions didn’t go very far and I must say, I didn’t blame him for being reluctant given his experience with his own father. My grandfather died of AD at age 79. Three or four years prior to his death, my dad and his sister took my grandfather to the Cleveland Clinic where he was given a diagnosis of AD and basically told there was nothing they could do and “good luck”. I was in college at the time and vividly remember my father’s instructions to take him out on the beach and shoot him in the head if he were to ever show signs of the disease.

Only after reading Dr. Bredesen’s book, researching on line, visiting this site and feeling a shred of hope, could my mother and I convince my father to visit a Bredesen trained physician. Oh, and I also had to agree to go through the same screening as my dad. I did so happily. We found out last week that my dad is Apoe 4/4 and therefore (spoiler alert!), I knew before we even got to my test results that I had at least one copy (I’m 3/4). I wasn’t all that surprised especially after learning from my cousin that my dad’s sister has been diagnosed with AD. And, after perusing this site for the last few months, I felt prepared to hear the genetic news.

At this point, we have started on the Bredesen protocol and I have begun researching clinical trials that my dad may be eligible for. Does anyone here have any other suggestions for things I can do to help my father? He is 76, MoCA score of 23 and processing speed in the lowest 1% for his age group. I have seen a fairly rapid decline in the last 6 months.

Thank you for this site and thanks in advance for any guidance!
Last edited by IrishGirl on Mon May 28, 2018 1:19 pm, edited 1 time in total.

Cas
Contributor
Contributor
Posts: 36
Joined: Sun Jan 07, 2018 3:58 pm

Re: Introduction

Postby Cas » Sun May 27, 2018 12:31 pm

Hi Irish girl and welcome to the site.

What a rollercoaster you have been on with your family and I’m so sorry to hear you have witnessed such a decline in your dad’s condition recently. I’m really pleased you have found the site and I’m sure there will be lots of people on her that can offer guidance to you about clinical trials and so on.

For now and as a starting point take a look at our primer

viewtopic.php?f=33&t=1418&start=10#p15694

It provides a lot of detailed information about the lifestyle changes you can make to help both you and your dad.

Take care
Catherine
Functional Medicine Coaching Academy Student

NF52
Support Team
Support Team
Posts: 1560
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Introduction

Postby NF52 » Sun May 27, 2018 1:40 pm

IrishGirl wrote:Hi!
At this point, we have started on the Bredesen protocol and I have begun researching clinical trials that my dad may be eligible for. Does anyone here have any other suggestions for things I can do to help my father? He is 76, MoCA score of 23 and processing speed in the lowest 1% for his age group. I have seen a fairly rapid decline in the last 6 months.


A warm welcome, Irish girl,
I am sorry that you and your family are dealing with yet another diagnosis of AD, and yet also glad that you are so willing to support your mother and father in these important years. As far as clinical trials, you may have found the website for Clinical Trials,gov; the Advanced Search function is helpful to narrow your results to where your dad lives. https://clinicaltrials.gov/ct2/search/advanced?cond=&term=&cntry=&state=&city=&dist= It's worth talking to your mother about whether she is able and willing to be a "study partner" and accompany him to the study site. In any clinical trial, he is likely to have a 68% chance of being on the study drug, and a 32% chance of being on a placebo. But in his place, I would go for a trial, and am now in the Generations Trial for asymptomatic ApoE 4/4 people who are 60-75. If your Dad is a veteran, there may be programs at the regional VA for both him and your mother as caregiver; the Dept. of Defense actually spends millions each year to fund research from universities and at VA centers focused on getting the most impact for quality of life, and reducing caregiver burden, in addition to treatment options. There may also be programs available at Memory Clinics in regional teaching hospitals that provide support to both people with AD and their families. My 34 year old daughter has two friends whose fathers have recently been diagnosed with AD at the age of 68, and both are working with regional teaching hospitals that provide regular monitoring and support for families.

A lot of people are trying to look at what helps caregivers as well as those dealing with early AD. I would encourage you to talk with your mother about what responsibilities she feels comfortable taking on that your dad used to handle and what she might like help with from you or other family members. For example, my own mother was happy to let me set up online banking and with a durable Power of Attorney, I was able to help her close out several small bank accounts that she had for decades. consolidate checking and savings to a local bank she could drive to, pay almost all bills online myself, or have them deducted automatically from her checking account, and have myself listed as the person to whom all auto and home insurance paperwork came. If you dad had been handling finances, and your mom is not as comfortable with that, she may welcome the chance to have you help out.
Chances are your dad was the handyman around the house, and would probably still like to mow the lawn, clean the garage, and climb on the roof! You or your mom may be able to negotiate with him so that he still feels he's contributing to the family. My mother raked leaves well into her mid-80's, even after she wasn't driving any more, and loved doing it.

My own parents made similar comments to your dad's "beach" comment when my grandmother was in a nursing home, and I was in college, although they called it "taking a little pill" option. My dad died of cardiac arrest at 67 (no doubt from ApoE 4-related heart disease),, but my mother found a certain level of serenity as she moved from mild forgetfulness to not finding her way home, to needing more intensive support. She never lost the sweet personality and excellent language skills. Correcting typos on posters in the nursing home during her last two months of life is actually a warm memory. I think it helps to think of your dad as moving into a life that is lived more in the present, and in enjoying the distant past, and I would take the chance to encourage him to talk about his childhood--especially those Irish relatives and stories of where they came from. I wish I had done more of that with my mother. One of the last comments she made to me was "I will cherish the wonderful life I've had." I know that some people have very tragic and prolonged periods of suffering with AD, or with their loved one's changes in personality, but my hope is that you and your parents discover that the Bredesen protocol helps, and that walking a path that is uncertain together is an experience of great love.
If I can help at all with the clinical trials search, please either post what the nearest city is for your parents, or Private Message me.
Hugs. Irish girl.
4/4 and still an optimist!

chrissyr
Senior Contributor
Senior Contributor
Posts: 184
Joined: Sat Sep 02, 2017 4:38 am

Re: Introduction

Postby chrissyr » Sun May 27, 2018 2:36 pm

My mom's experience is similar to NF52's mom's. It is not what she would have envisioned her older age to be, but she is enjoying food, people, being outside, music, humor. She really enjoys this world and living and that has not completely diminished. Not to say there have not been some rough times. I try not to get ahead of myself, worrying about the next stages, as we don't know exactly what will transpire. (e.g. 2 years ago we were quite worried about this stage, and it's worked out ok)

Please update us on how your dad is doing with the Bredesen protocol! It is very hopeful that things could be slowed down or reversed.

I am also taking NF52's advice to lean in and enjoy the present with my mom, as well as what she remembers of her distant past!

NF52
Support Team
Support Team
Posts: 1560
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Introduction

Postby NF52 » Sun May 27, 2018 2:53 pm

P.S. If you haven't found it already, the Alzheimer's Association website has very helpful articles with lots of great tips. Here's a link to one on the early stages of being a "care partner" (a term my own husband has earned for the last 38 years, and one I won't mind him using in the future). It emphasizes assuming that a person can be independent in tasks, and seeking to remove frustrations. In rehab with people who have had traumatic brain injuries, we call that "scaffolding support": providing just enough so that the person can experience a feeling of competence. https://www.alz.org/care/alzheimers-early-mild-stage-caregiving.asp

They also have a great page on travel. Many people with MCI or mild AD can still enjoy travel, with some preparations.
The father of one of those friends of my daughter, recently diagnosed with early stage AD, was given this advice: Do what makes you happy, and if one of those things is taking trips, this would be a great time to do that. With that encouragement, he is going with his wife and their kids on the adult children's first-ever trip to his country of birth, and he's super-excited about that.
https://www.alz.org/care/alzheimers-dem ... veling.asp
4/4 and still an optimist!

Verax
Contributor
Contributor
Posts: 85
Joined: Mon Apr 23, 2018 3:13 pm

Re: Introduction

Postby Verax » Sun May 27, 2018 3:59 pm

NF52 wrote:P.S. If you haven't found it already, the Alzheimer's Association website has very helpful articles with lots of great tips. \\


I want to echo NF52's reference to the Alzheimer's Association. There seems to be much stigma about AD and it helped me to go to a support group meeting ("AA" meeting of a different sort) and share experiences pseudonymously with other people. (Find one at https://www.alz.org/mnnd/in_my_community_support.asp ) I went to my first meeting recently and learned a lot from both patients and caregivers. We talked about anticipating two problems in particular, bedwetting and wandering, and discussed various ways of coping. Most of us want to take care of our loved ones and most of us want to live and die at home with our loved ones, not alone in a nursing home, but home care is very difficult for all and we have to be serious and rational about the evolving stages of the disease if perchance we cannot prevent it or the angel passes by.

As for getting shot on the beach instead, I can refer to the old Chinese proverb about the grandfather in famine times. The whole family was starving and the old man silently understood he must die first to save the others. So the father built a box and put it on a wheelbarrow with grandad and took it to the beach or burial mound. Before he was killed, Grandpa remarked, "Save the box, son, you may need it for yourself." As a 3/4 I understand what that means.

IrishGirl
New User
New User
Posts: 2
Joined: Sun May 27, 2018 11:57 am

Re: Introduction

Postby IrishGirl » Mon May 28, 2018 6:29 am

Wow! Great advice. I have been so focused on how to "fix" the AD that I haven't really thought about how to help make my dad's (and mom's) life better. Good reminder about living in the present. I really appreciate the advice.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 8 guests