And another rare disease

I am the caregiver for my wife who has AOA2. Its been a long road with the disease. She was diagnosed in 1999 with having some form of Ataxia but it took 10 years to find out which type she had. She currently uses a walker in the home and is in a wheelchair when out of the house.

A little over a year ago, I started noticing some strange behavior from her. She constantly repeated herself, would zone out, and would become very confused. This would happen once a month, then it became once a week, and finally every day. I took her to her neurologist and after his exam, he felt she was exhibiting symptoms not common with ataxia. He ordered a SPECT Scan of her brain and it showed she has right temporal lobe damage. The name of this is FTD, Frontal Temporal Dementia. It is rare and similar to Alzheimer's. So, my lovely wife has two rare neuological diseases. The prognosis for the FTD is 5 years before becoming totally incapacitated mentally. She is currently on an Alzheimer's drug to slow the progression down and give her some clarity. So far I have seen some small improvement.


Dick, I am so sorry about the Frontal Temporal Dementia. How heartbreaking. I wish the news were different. How fortunate that your wife has you by her side.

So sorry to hear this.

Dear Dick, I'm sorry your wife is dealing with all of this! My heart goes out to you as her caregiver, as it's so difficult to see someone you love declining in health. You sound like a very loving and caring husband! This site is wonderful for understanding and support! As a caregiver, we're her for you and your wife! ;o)

Hi Dick,
I can only echo the others in saying that you are a wonderful husband. Also, make sure you take good care of yourself and if at all possible take sometime for yourself. Caregiving is one of a toughest job and you seem so good at it that you probably do not think about your own mental and physical health!
Best wishes to your wife and you.

Hi Dick, I see that you are in MA. The capital of Lyme in America. My wife’s first neuro symptoms were the same as your wife’s and at first thought to be ataxia, but nothing showed in DNA test. And then no shrinkage of cerebellum over 2 years. So we followed a suggestion and persued Lyme’s tests from IGeneX lab. The Lyme’s was attacking her neurons coming out of her cerebellum. Been fighting the Lyme’s battle now for over a year. Your wife’s new memory loss symptom is similar to Tom Seavers. He started with balance, slurred speech and then in phase 3 it attacked his temporal lobe and had memory loss.

So if you haven’t looked in the Lyme’s direction, it might be a good idea.

Best regards

Hi Dick, cant find words to express how much sadness I feel for you, your wife and family but just want too say hello.

Stay strong, Patsy x

I am sending you and your family all my best wishes for health, happiness, and peace of mind. I just finished another longer reply to you but it disappeared, possibly because I’m using an iPhone. This has happened sooo many times. Needless to say, my first replies are always better and longer and more detailed than the second efforts. In future I will compose in another app and copy and paste. Best wishes from a fellow caregiver .

Hello Dick,

Ed mentioned Lyme's disease and another discussion yesterday mentioned oxidative stress and inflammation. I have a pdf file that I am not able to attach here about a study done at UGA (Dec 2011) on Alzheimer's and oxidative stress. The supplement protandim (my husband and I have been taking for 3 years) reduces oxidative stress by 40% in 30 days and also reduces inflammation and scar tissue. It was on ABC news in 2005 My husband still has ataxia but protandim helped his energy level and mental clarity very quickly. I know the strain of this condition on the patient and the family, so am happy to share anything (we have tried many many things) that brings help and hope.

I have contacted a friend with AOA2, she will contact you when she soon

Thank you all for your kind words and for your information. I will investigate your suggestions.


So sorry for the illnesses you & your wife are dealing with. At least you got a diagnosis, although I knew this is of no comfort to you.

Take care of yourself too!


I worry about my health and what would happen to my wife. I am a chronic pain sufferer having had 4 back surgeries including a 5 level spinal fusion. I do have two grown sons that help as much as they can but its not easy as you caregivers already know.


Dick, sometimes your state may provide resources, particularly if you both are seniors. Are you? This resource page may be helpful to you then:

Let me know if you get assistance from the resources on this page.

Dear Dick,

This is for you "He Giveth More Grace". He giveth more grace as our burdens grow greater, He sendeth more strength as our labors increase; To added afflictions He addeth His mercy, To multiplied trials He multiplies peace. Remember God is with you and he will give you grace to sustain all that you need.

Dick--wow, i'm so sorry to hear about your wife. From what you said, am i right in thinking she still has times when she is clear and normal? I'm really sorry. These conditions are so far from being well understood, maybe there is hope that things will turn out differently than predicted. Joy's message about protandim was interesting to me, will follow up.

I want to share with you an experience i had--as far as i know it's not common, or maybe it is. i didn't really look into it when it happened. It was my mom, she was in her mid 80s and she had had signs of mild dementia, she was still living on her own without help. She went to her doctor where she expressed fear that she wouldn't be able to find her car in the parking lot, so the doctor went with her to find her car. Not long after that, he prescribed Aricept for her, he told her she had early Alzheimers, which really depressed and frightened her. He gave her a CD that had a video and we watched it together.

She started taking the medication. This was 2003. After that, she rapidly went down hill. She got so she couldn't participate in conversations. If she was there, she would just be quiet, she wouldn't know what was going on, she wouldn't understand what people were talking about. She had no idea what to say. She had been very sociable up until this time. Before she retired, she had been an elementary school teacher. She loved to socialize, she had lots of friends. So it was sad and amazing to watch her so rapidly decline socially.

I began looking at assisted living places for her. I think it was the second or third one we went to, and the owner who was also a registered nurse, was sitting across from us at her desk and telling about their program, and talking about dementia, and just in the course of this conversation, she happened to say in passing, "…sometimes the medications that are prescribed for Alzheimer's makes the symptoms worse…" and she went on with whatever else she was saying. But it stopped my mind because there was no doubt that my mom's steep rapid decline had begun shortly after she started taking Aricept, maybe at most a month after, she may have started at a low dose and then increased it. It had been so odd the way she suddenly and abruptly lost her ability to interact with other people, something she always loved to do.

When i got home i called the doctor and told them she seemed to have side effects from the medication and i was going to stop giving it to her, and wanted to let them know. They said it was OK to stop it so i did--and she totally came back to the place she was at before she suddenly started to go down hill. She recovered. She had been gradually developing dementia, and that continued, but the way she suddenly became disconnected from the world was sudden and it was quickly reversed when the meds were stopped. I got her a part time in home caregiver 4 hours a day from Visiting Angels and that continued for 4 more years.

If not for that nurse/facility owner saying in passing that the meds could cause the symptoms of the disease, my mom would've been placed in an institution. Instead, she had 4 more years at home and out in the world, still living her life somewhat normally, with only gradually decline, visiting with her friends and family.

In 2007, she got a lot worse. She had had the same caregiver the whole time. who loved her and went way beyond the call of duty. She called me and told me some alarming things, like when my mom got dressed in the morning, she put her underwear on the outside instead of underneath. So then i knew a big change was going on, and pretty quickly, i got down to searching for a facility for her, steep learning curve, a stressful time, but in a couple of months, she went into the place where she still is now, a wonderful place where she gets wonderful care--and to this day, she is still sociable, she loves to converse, she has not so much memory which limits things she can say and understand, but she still enjoys it, and she still knows who i am and who my daughter is, though not anybody else, and she still likes to say and to hear "I love you!" When she was on the Alzheimers medication, she could not do that.

I'm not saying this to imply there's anything wrong with the medication your wife is getting, a lot of people report getting help from those medications. But after what happened to me, i always think of it when that subject comes up and think it's just something to be aware of because we already expect the condition to progress, and doctors expect it too, and what if no one checks to make sure it's not the medication causing the decline? if not for that chance meeting with that woman, my mom would've been put in an institution 4 years sooner and would've been vegetative because of the medication and instead she has had and still has an enjoyable life

I'm sorry you have gotten bad news. I guess there are always new things to learn, some times hiding is unexpected places.

I need to comment on Protandim. It does not have a track record of proven effectiveness in well-designed clinical trials. It is marketed through multi-level marketing, which is not generally a sign of validity. In short, it is not an evidence-based therapy.


Dear Dick - Just wanted to apologize for my last comment (assuming it went through!) that talked more about my frustration at losing my comments (I think I lost my first 2 attempts to you) more than my sympathy and support for your situation. (I am also a caregiver). I have been using the mobile version and hope to write again when my situation gets fixed. With sympathy and admiration, Mish

Some facts on Protandim--in 2005 made news ABC, NBC, PBS as a breakthrough discovery by Dr. Joe McCord research scientist in Colorado -result of 42 years of research. It was in the news because the FDA had checked it out (even tho' they do not approve supplements) and the FDA approved statement was "Protandim reduces oxidative stress by 40% in 30 days" That was such a huge breakthrough that the American Heart Association and 28 medical universities (LSU, OSU, VCU, etc) funded their own studies some of which can be seen on It was not started as an MLM--was sold at GNC, etc from 2005 to 2009, but nearly went bankrupt because it did not sell--no one understood it--needed person to person--changed to word of mouth and went from $3million to $208 million from 2009 to 2013. I totally understand that sites like this want to "protect" patients, but I came here for information and help and tips --not only sympathy. It is very unfortunate that people assume you are trying to "sell" when you only want to "tell". We have tried so many many things, most of which cost so much more than Protandim. An old sage said "There are two ways to be fooled-to believe something that is not true and to refuse to believe something that is true."