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New Member, Don't Know Where to Start and Trying to Understand
Dave4Now
Posted: Wednesday, November 21, 2018 11:14 AM
Joined: 11/21/2018
Posts: 5


Hi There, 

My name is Dave. And I'm 49. And I will try to keep this short. But there is just so much. I'm a smart person. In college I qualified to join Mensa. I've always been way ahead of the 'norm'. Overachiever, creative, imaginative, literally capable of learning and doing anything. I love techie gadgets, animals, and have/had the ability to build a house or rebuild a car engine. 

When I was 30 I got hit with viral encephalitis and pseudo tumor cerebri. I went from being a top expert in the legal field to someone who couldn't drive a car, sometimes didn't know his name, and couldn't get up the stairs. It took 10 months to get functional from that ordeal. But it left me with chronic headaches and cognitive issues. Previously I would read a few books a week, and be able to multi-task 5 things at once. In the last 19 years I don't think I have read more than 3 books. After lots of testing I was titled as having a non-traumatic brain injury. 

When I was 39 I got Kidney Cancer. 

And now at 49 - Frontal Temporal Dementia

Two years ago I started having problems doing things correctly. If I was wiring something and had 4 different colored wires, when I was finished red would go to black, black to green, etc etc --- I would get upset -- a stupid mistake. And then cut the wires apart, start over and do the same mistake over and over. 

I then got to the point when I was doing something wrong, I knew it was wrong, but couldn't stop. Example - Painting a wall - As soon as the pain went on the wall I knew it was the wrong color (by alot). But I just kept painting.... the whole wall. 

Even after the Encephalitis I was very high functioning. So when I tried to explain what was going on, nobody could see or understand it. 

My memory issues got worse. I have 3 young nieces and nephews, but if I see a photo of a bunch of kids - I usually don't know which ones are my niece and nephews. I was married 3.5 years ago (first time). I don't remember our wedding. When I see photos I know it us, but I don't remember being there. 

I have always been an easy going person. Nothing upset me. I don't yell. I always enjoyed things. When this started 2 years ago I was just angry at everyone and everything. When I tried to get help, everyone looked at my medical history and prescription list. Because I have prescriptions for Pain Killers, every single Dr said I needed to seek addiction treatment. My parents followed that line of thinking. It got so frustrating that no one would listen. I finally made a video - I printed up the last 24 months of prescriptions and highlighted all the 'narcotics' prescribed, with pill counts. And then on a big table, showed each bottle, opened them and counted out the pills. I had been prescribed 300+ painkillers in 24 months. There were over 275 pills.    No response from my parents, no apology, just denial. 

My cognitive issues were getting worse, I would be working on a project, need a tool, walk into a room and have no idea what I was looking for. I started keeping pads in my pocket to write down what I was going to look for. A year ago I found a Neuro Psych that specialized with stroke victims. We did the full cognitive and personality workup. My scores on the cognitive were at the top of the charts. 95% to 99.9% percentile in some categories. And then there were some aspects were I went from 90s in a category to a 30. The Dr said that all the 30 scores were the issues, and that there was something wrong. Problem is 30 is the bottom of what's considered normal. So they didn't have a treatment program for someone whose deficits are still whats normal for someone else. 

I pushed the image and had MRI and fMRI testing done. The fMRI test found that both frontal lobes had 'Traumatic Brain Injury'. I am right handed, but the left side of the brain has lower oxygen levels than the right. And my Corpus Callosum has atrophied. 

We got those results in August. We have been to 7 different neuro specialists. All have said the same thing. We can't fix it, We Can't stop it, we can't slow it down. The only meds for you, you have already been on for 5 years. You  need to stimulate your brain, get treated for depression and remove stress. It almost felt like it was a conspiracy because they all said the exact same thing. The first 2 Dr's called it Early Onset Alz. But 2 other neuros said that I am still to smart for Alz. 

Finally got the title of Frontal Temporal Dementia -- But when you tell people Dementia, they think you are crazy. You say Early Onset and they have a better understanding of what's going on. 

The Dr's have not been able to give any kind of progress info. One Dr said I should be able to take care of myself for 2 years, one Dr said 5, they have all also said, your cognitive deficits could just stay where they are and not get worse. 

In the past few months I feel the deficits have gotten worse. I'm smart enough to know that being depressed about what's going on doesn't help. But now I have ADD like a 3 year old who drank a 2 liter of mountain dew. At the end of the day I have no idea what I did all day. I can't tell you what I ate yesterday. I'm grouchy all the time, I can't ever just relax and feel at ease. I have very little sense of time. I think I am working on something for 10 mins and then discover it was 2 hours.

In the last few weeks there have been several times when I wrote long emails to people, and then discovered that I never really wrote them - In my head I remember doing it, I remember spell checking and correcting them, but there is no history what so ever of me actually doing it. This past weekend I got mad at my wife for not listening to me, I was getting angrier and angrier and louder. And when I finally gave her a push (just a push, nothing aggressive) for not listening to me, she told I hadn't said anything in the last 10 mins --- This kind of crap scares me...

So that's the SHORT version of how I got to find this board. 

I'm a logical and mechanical thinker, and am trying to get a grasp of what's happening to me, and what to expect. And the Dr's haven't given me any insight. In fact my primary neuro psych told me specifically not to research these issues, and since August I haven't 

I am hoping this board can help point me in the direction to find more information for what I can expect, and help my wife and family better prepare for what is happening. My family doesn't understand anything about this. The only thing they know is that I have a substantial stuttering problem. And to them since that's the only 'physical' sign that's the only thing they recognize as being wrong. 

If you got all the way to the bottom of this post, well then your ADD issues are probably better than mine. 

I am fortunate that we have no financial issues, or insurance issues. If there is something that realistically could help, I can afford to try anything.

I'm in Los Angeles, if anyone has any recommendations. 

 

Thanks for any help or insight you can provide.

Dave

 

 

 

 

 


jfkoc
Posted: Wednesday, November 21, 2018 11:38 AM
Joined: 12/4/2011
Posts: 17525


You have started and you could not have found a better place to land. This is where you will find understanding and support as well as truly helpful information.

I was a caregiver but I read and post here as well as on several of the forums. We all probably do this to some extent.

I think the association has pulled together some excellent practical information. I hope you and your wife take time and go over the selections at Alz.org.

You are not alone!

 


Mimi S.
Posted: Wednesday, November 21, 2018 12:22 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world, Dave. I'm so glad you found our site. You might also want to check out fronto-t on the internet. It is complicated and has many sub-divisions. Unfortunately, the meds that are designed to slow down the progression of Alzheimer's are not appropriate for FTD.  usually in FTD, the memory is not as affected but anger issues are more difficult.

Re testing. The person who did my testing thought that one's previous cognitive level was highly important. If you were Mensa eligible your pre scores would have been at or near the top. Therefore to say a score of 30 was normal is ridiculous. A score near "normal" would show a big deficit and one in the 30s a major problem.

Right now you have to accept what is. The usual advice is to work with your strengths and try to compensate for your deficits.

Several of we PWD believe a life style that encompasses Best practices might hep slow down the progression of the disease. Unfortunately for you, research that proves this has not, as far as I know, been tested on FTDs.

 

Best Practices: 1. Take meds as directed.  With you, hopefully your neuro can cast an eye to see if some meds can be lowered or eliminated.

 

2. Physical exercise. Research has shown such builds new brain cells. Get that heart puping faster for a bit.

 

3. Cognitive exercise. A variety is best.

 

4. Mediterranean diet. No smoking. limited alcohol.

 

5. Maintain or increase socialization.  I don't know if you and wife can work together to figure out how to do this and minimize hurting others with your remarks, if this is a probem area.
alz+
Posted: Wednesday, November 21, 2018 1:22 PM
Joined: 9/12/2013
Posts: 3549


Dave -

I am going into hiding right now to recover from a loss of courage and a torrent of public swearing but I hope to learn more about your experience and share ideas on how to make life easier.

Also that you wrote a lot was wonderful because it was interesting and because I am long winded and am embarrassed that I turn a walk down the road into 30" of words. No one ever complains still it was nice to read your account and experience comfort in shared difficulties.

you are a good writer. you have lots more to share. when/if I come out of my isolation tank style week I think I can learn from you.

also I'm the one who uses CBD oil and have benefitted hugely from it. I don't know if it would help you but you live in the mecca of good cbd designers and they deliver.

it is what it is


Jo C.
Posted: Wednesday, November 21, 2018 2:30 PM
Joined: 12/9/2011
Posts: 10195


Hello and a very warm welcome to you, Dave.  We are pleased to make your acquaintance.   You are indeed an excellent writer, it was gripping to read your story.

The Alzheimer's Assn. has a Helpline that can be reached at (800) 272-3900.  If you choose to call for information or support, please ask to be put in contact with a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They may have helpful information that may be useful for you and your wife.

NOTE:  The University of San Francisco has the Weill Institute for Neuroscience and they have a nationally recognized clinic devoted to FTD . . . . it may be a positive for you and your wife to make some inquiries to see what may be new or of interest.   Just a short telephone call or plane ride away.

https://memory.ucsf.edu/memory-and-aging-center-clinic

If there is any way we can be helpful to you or your wife, do let us know.

Warmest thoughts are being sent your way,

J.


Lovey Dovey 2959123
Posted: Tuesday, December 4, 2018 3:05 PM
Joined: 11/8/2018
Posts: 1


My name is Nancy and I’m 59. I was diagnosed with early onset dementia on November 7th. I was was working as a chemist at an environmental consulting company. Starting about a year ago, I started struggling with my job. I was making numerous mistakes on the reports I wrote. I tried so hard but keep on struggling. I was afraid that I would be fired so i went out on short-term disability. I’m in the process of applying for California Disability and the process has been difficult. Everything is online and my computer skills have become poor. I feel like I’m on an emotional rollercoaster. I cry every day and I’m difficult to live with. There are no support groups locally for people with dementia. I try so hard to not be emotional, but can’t seem to control myself. A part of this is that I’m fighting the diagnosis even though I know I have dementia. Any suggestions or feedback would be appreciated. Thanks for listening!
Iris L.
Posted: Tuesday, December 4, 2018 7:11 PM
Joined: 12/15/2011
Posts: 16181


Welcome, Nancy.  Were you diagnosed as having dementia by a neurologist who specializes in the dementias?  This is important because many diseases and drug side effects can mimic dementia.  

Your local chapter might have a support group.  Nevertheless, you can receive support from a Care Consultant from the Alzheimer's Association .  Call the Helpline at 1-800-272-3900.  He or she can give you advice and direct you to local resources.

KKeep posting and asking questions Nancy.

IIris L.


Mimi S.
Posted: Tuesday, December 4, 2018 7:25 PM
Joined: 11/29/2011
Posts: 7035


Hi Nancy.

And a very warm welcome to you.  Iris has asked a very important question.

 


Smiles2U
Posted: Tuesday, December 11, 2018 6:17 AM
Joined: 12/5/2018
Posts: 2


HEllo Nancy. I can certainly understand your frustration. But believe it or not it helps to try to keep a positive outlook. Its easier said than done but stay around and in touch with positive people. And know our disease is progressive. Its not immediate. What helps me is I to try to look at what is still normal instead of what is no longer normal. Write a note to yourself what you did right or what you did that may be funny. But key is find something about YOU that can keep you calm or make you laugh when you feel frustrated or down. A favorite song, book, dance, walk etc. That make you feel better when you really are feeling yikes! Remember positive thinking is powerful. You are stronger than you think. Dementia or Alzheimer.s we may have BUT it don't have us! 

 


Smiles2U
Posted: Tuesday, December 11, 2018 6:20 AM
Joined: 12/5/2018
Posts: 2


Nancy I hope you got my reply .my first time posting. lol. May every one have a day that is just like each of you.   Absolutely fabulous...
Mimi S.
Posted: Tuesday, December 11, 2018 10:33 AM
Joined: 11/29/2011
Posts: 7035


Dear Smiles,

Welcome to our world. I'm so glad you foud our site.

You do have a wonderful positive attitude.

Do tell us more about yourself.

Several of the PWDs on these boards are big advocates of Best practices as a proven means of possibly slowing the progression of the disease.

1. Take meds as prescribed.

2. Increase physical exercise. Builds new brain tissue. The goal is to get the heart pumping faster than normal for a bit.

3. Increase cognitive exercises. A variety is best.

4. increase or maintain social activities. We need socialization but don't do well in noise and crowds.

5. Mediterranean Diet. No smoking! Limited alcohol.

 


Dave4Now
Posted: Friday, December 14, 2018 6:33 PM
Joined: 11/21/2018
Posts: 5


Hi Everyone, 

Thank you for the warm welcome and compliments. 

I made my first post the day before Thanksgiving. And then the day after Turkey day my dad went into the hospital. I spent 2.5 weeks away from home and staying and taking care of my parentals. 

The only think my family understands about what I am going through is my stuttering. If I go an hour or 2 without stuttering, they make some comment, like see it's not that bad. 

They don't want to hear about anything else. They have no desire to try to understand what's taking place in my head. 

At the end of the 2nd week taking care of my parents I was down on the dock (they live on the water) and the neighbors came outside and asked why my car had been parked in front for so long. I told them the story of my Dad. 

Then the neighbors said, we heard about what you are going thru, How are you doing? 

It was such a simple query. Shouldn't have been a big deal. I answered the question with a smile and a good attitude. And then it just started eating away at me. 2 weeks living with my parents and taking care of them, and not once had they asked me "How I was doing?". 

This just kept eating away at me. 

After 2.5  weeks I finally came back home earlier this week to my house, my animals, and my amazing wife. 

While I was staying with my parents, I was really happy with how I was dealing with all the stress of the situation. I had been on-top of the hospital staff, and my Dads vitals, and his pills, and Dr's and staff. I had my note pad in my pocket and I kept up with almost everything. 

But then I came home, and in the first few hours I was just so overwhelmed with what I had to do. Boxes had arrived while I was gone with parts for projects, and I have no idea what projects or why I bought the pieces. Pets, Cars, Plants, Bills, Appliances, House, etc etc -- So many things I needed to do back at home, and I just didn't know what to do. 

I realized that while taking care of my folks for the most part I just waited and listened and didn't really have to think that much. But when I got home and had to think, it gutted me as to how hard that has become. 

And yesterday the wife was having a rough day at work, so I went to the market to make her a nice dinner. I was standing in the cookie aisle and had no idea what cookies my wife likes. I'm thankful that most people in my neighborhood aren't scared of a fat bald guy crying in front of all the cookies -- I guess usually it's a supermodel doing the same thing. 

These few things that happened since I came back home made me start to wonder about the progression of decline. So last night I started reading. And depending where you read the timeline varies. But it looks like the # of years is usually single digits. And while I was diagnosed in August, I first started noticing my deficits 2 years ago. 

As you all are probably familiar with the feeling--- today I'm pretty exasperated by it all. I wanted to buy a new car, but then its like what's the point. How long am I going to be able to enjoy it, and do I really want to add one more thing to add to the list of things my wife is going to have to deal with at some point in the future. 

Alas, I have rambled on and on yet again. It's been a rough few weeks,  You know your dementia is messing with you when you remember signing up on a site and posting.... but you have no recollection of the name of the website... LOL --- Not joking. Had to scroll back thru the browser history and click on 20+ links till I found a site that let's me log in.  And here I am finally posting. 

Thanks so much for those that posted. For those that read, but don't want to post, typing this stuff out can be cathartic. And as long as your significant other isn't worried that you are on the computer crying (while they suspect you are looking at naughty videos) give it a shot. 

I hope everyone has a better weekend than me !

Dave

 

 

 

 


CloveroftheDale
Posted: Thursday, December 20, 2018 9:49 AM
Joined: 12/12/2018
Posts: 10


to alz+ I can so relate to your long-windedness. The walk down the road = 30 inches of writing made me LOL. 

Thank you for your articulation, your courage. And what a fantastic concept, to report on this experience from the inside. As the wife of a sufferer, it enlarges my understanding immensely when I'm able to put myself in her "moccasins." I've found that being vulnerable with a witness can be an act of power, which also includes responsibility.

I really like your portrait, the painting. I'm gonna try something like that instead of my sad face.

Are you perhaps a Gemini? I am. And I adore language, plus hearing myself talk [wry face]. I send my admiration and will be looking for more of your words.


CloveroftheDale
Posted: Thursday, December 20, 2018 10:09 AM
Joined: 12/12/2018
Posts: 10


Hey Dave, What a story you have lived! And how strong and brave you must be to endure such suffering. I'm grateful to you for sharing. I'm new here, too, and have found that reading the various and unique posts has given me a feeling of connection. I've been so isolated which makes everything more difficult, so again, thank you.

Looks like there is lots of support and guidance for a PWD. I hope it helps you get through your day. All I can offer is my own coping strategy which is to be alert for any and every good moment in a single day and celebrate that when I retire for the evening. Looking back, the best moment of yesterday was a remark made by my DW who's always had a dark dry sense of humor. When I asked her first thing how she was, she opened one eye and said "I'm not dead."

She knew that would make me laugh and it did. It also gave me a small bit of her old self that I love so fiercely. So I encourage you to be sure you don't miss the best moment of each day. It won't make the struggles and pain disappear but it will add some welcome seasoning.


Dave4Now
Posted: Thursday, February 21, 2019 5:35 AM
Joined: 11/21/2018
Posts: 5


Didn't want to be a person that dropped in... used up all the space on the site with my story telling and then vanished. 

I keep dropping into the board... Is it ironic that I can never remember the name of this site... Kind of punny (yes as a pun not a typo). 

I so want to try to find out what the signs are of things progressing. So when I do pop onto this board I read posts and then find more things related to what I see happening to me... And then I have to go off and process it. 

By all standards I am doing really well. My shrink keeps telling me I am 'lucky' because is I wasn't so intelligent I wouldn't have recognized what was happening to me and wouldn't have kept pursuing to find out what was wrong. That's not really the help I thought I would get from a shrink. 

I have never been a believer in therapy. My opinion (being the logical thinker) is if you know what's wrong fix it and move on. But every single doctor or med program I have spoken to about my diagnosis they all same - Get a shrink and get treated for depression. 

I have been seeing the shrink for the past year. And to me all it is is someone pumping up my ego about how smart I still am and how lucky I am to be able to still do as much as I do. 

I am respectful, that I am (still) much more capable than most. But for me its a struggle. The shrink is amazed at the complex things I am working or building to keep myself busy. And I'm just upset that I have to do everything 3 or 4x to get it correct. 

I am so in efficient in what I get done on a daily basis these days that the thought of giving up a few hours to go sit at the shrink and not feel like I am learning anything that can help me makes me want to quit. 

For the past 3 months I kept going because everything and everyone says I should. But now I don't 

I asked my wife if she sees a difference when I go to the shrink and she doesn't. But she is also going to the same shrink and she says that me explaining to the shrink what is upsetting me gives the shrink the ability to help my wife better understand and how to cope with me. So for the time being I am now going to the shrink to help my wife deal with my diagnosis. 

And my poor wife... Man does she take a bullet or 2 from me almost every 2 or 3 days. We are very different - which has never been an issue. My wife has a speech articulation issue. She uses wrong words, and tells partial stories that only make sense in her world. With my experience of being a litigation consultant and sitting in courtrooms for 24 years listening to every word to be able to respond with the appropriate exhibit instantly - I'm almost too good a listener. 

And while my wife's unique 'story telling' was always endearing and cute -- now it frustrates me. And while it frustrated me since we met, it was always something that I kept inside. I didn't want to put her down for something beyond her ability to control (wow hows that for frickin big picture irony). 

But now it just pisses me off, and I can't keep it internally. 

My concentration and focus is so fragile that if I am working on something and she calls I won't answer the phone. And if she asks me a question at home - which is really irrelevant in the big scheme of things  but not to a husband and wife - that I bark at her. 

And of course when I bark at her, then I lose my focus and then get pissed cause I have no idea what I was working on. 

Okay enough 3:30 ranting for now - Just wanted to let you all know that I'm still lingering. 

Tomorrow got a 2nd meeting with a new Neurologist who has a Dr. House approach... Instead of just taking my weight, temp and blood pressure and then asking me what's wrong - He asks how many sodas have I had in the last 24,/48 hours - What side did I sleep on. How much sleep did I have. He has 400 different unique questions that he asks about. 

Looking forward to seeing if he has any good news. 

Also applied to a Clinical study at UCLA - It was a long term study to track the rate of decline - nothing beneficial to me - but perhaps would help someone else. UCLA came back and had me apply for a trial that does involve a new med... Of course with my luck I'll be in the placebo group -- But the upside is -- No shitty side effects!!

Dave


Iris L.
Posted: Thursday, February 21, 2019 9:43 PM
Joined: 12/15/2011
Posts: 16181


HelloDave.  Since you live in LA, you might want to check out B.R.A.I.N.  This is a support group developed for adults with acquired brain injury, who are between the ages of 25-50.  They meet in Cypress.  I attended their meetings for about a year, because one of the leaders was my cognitive rehabilitation therapist.  The website address is www.thebrainsite.org.

Iris


Cathyde
Posted: Sunday, April 21, 2019 10:10 PM
Joined: 4/21/2019
Posts: 30


Hi Dave, I was just diagnosed at 57  it took 2years to get diagnosed. pcp said anxiety, was prescribed artcep seems there is no help  and probally worse due to taking anxiety medication for 2 year, best wishes for a miracle for all of us
Cathyde
Posted: Sunday, April 21, 2019 10:12 PM
Joined: 4/21/2019
Posts: 30


I feel so alone
Cathyde
Posted: Sunday, April 21, 2019 10:16 PM
Joined: 4/21/2019
Posts: 30


Hi Nancy, I am 57 and had to give up a great high salary job and now just don't know what to do, alone and cry a lot ...may god bless us all
Cathyde
Posted: Sunday, April 21, 2019 11:13 PM
Joined: 4/21/2019
Posts: 30


I hope I can be as you are talking about our deficits without crying and not putting this burden on my children, you give me hope. That I may be able to learn and help
Mimi S.
Posted: Monday, April 22, 2019 12:16 PM
Joined: 11/29/2011
Posts: 7035


Dear Cathy,

I'm so glad you found our site. Do tell us more about yourself and the process of your diagnosis.

We want to help.


Vik
Posted: Tuesday, April 23, 2019 9:27 AM
Joined: 2/26/2019
Posts: 172


I hav Early Onset Dementia too. Being in a support group is vital to making it thru this journey. The people on this site are very lovimg and caring. Plus they hav experience with this! 

I hav done ALOT of readimg on dementia, and specifically in the type of dememtia i hav--vascular dememtia.  I also joined my towns local support group and go to a Memory Cafe for people with dementia.

Perhaps the most useful support group i found is Demwntia Alliance International. Heres their link:

dementiaallianceinternational.org

They hav videoconferencing support groups where ive met ALOT of "younger" folks with dementia....


Canada111
Posted: Tuesday, April 23, 2019 3:04 PM
Joined: 8/22/2016
Posts: 262


Hi Kathy and Vik, I too was diagnosed with younger onset Alzheimer’s when I was 61. I am now 65 and the disease has progressed. I am doing as well as to be expected for a fast progresser. My symptoms have affected more than cognition, most are physical - balance, walking, sleep, and more recently chewing and swallowing. I have been writing a blog called Suddenly Mad: My Voyage Through Early Onset Alzheimer’s www.suddenlymad.com

I hope you will read my posts and comment. 


Canada111
Posted: Tuesday, April 23, 2019 3:09 PM
Joined: 8/22/2016
Posts: 262


I also attend Dementia Alliance International support groups online on Thursdays and Dementia Mentors on Monday and Friday. I have a dementia mentor I Zoom chat with on Wednesday’s and belong to Dementia Action Alliance and in the Art Workgroup committee.
TheSteven
Posted: Saturday, May 11, 2019 5:03 PM
Joined: 10/11/2014
Posts: 167


Welcome Dave4Now and Cathyde,

Do either of you have those dark dental fillingsinside of your mouths? If you have them it may be the root cause of your issues since they contain 50 percent mercury and constantly release into the body. After losing my job I was diagnosed with Younger Onset Alzheimer's when I was 56. I noticed issues years earlier and had PET scans, MRI's and neuropsych tests and also a spinal tap which showed I was only borderline. When I was 54 they thought it might eventually be frontal temporal dementia from my PET scans but just ruled it depression back then.

About a year after my ALZ diagnosis, after much research, I had my mercury dental fillings removed. My conditions improved and now my diagnosis is mild cognitive impairment. I think my cognitive thinking is fine most of the time when I take my supplements and while continuing to detox and it has been five years. Cognition is fine though I now have other health issues.

If you have these fillings, see  http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/

Ihave more links to this type of information and videos about this in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com

A lot of my journey's info I got from books like “Beating Alzheimer's” by Tom Warren and following the books indicated in his book like “Its All in Your Head” by Hal Huggins.

There are lots of supplements you can take as well even if you don't have any amalgam fillings but you may still be suffering from mercury from other sources and require detoxification. They are in the books listed on my blog.


Dave4Now
Posted: Thursday, June 20, 2019 12:29 AM
Joined: 11/21/2018
Posts: 5


So many things to do - And so many of them to do over and over - And I don't know if it's appropriate to call it Ironic, but every time I want to reach out to this group/forum to vent and realize it's not just me dealing with this... I can never remember the name of the site. And even saved as a bookmark I forget it. 

In the past few months I have been doing a bunch of testing. 

Did a Volumetric MRI -- The results were not good. Overall Brain Atrophy 86%

Frontal Lobes are in under the 9th Percentile for volume. And the pressure inside my head is high. 

I did a Pharmogenetic test --Don't waste your money or time on this one. 20 pages talking about what drugs may or may not work better for you--- There was nothing specific to me - And half the results which you think are of value on one page - You get to the next page and find out those results are either 50/50 or they were unable to actually test for the specific gene and the information supplied is the 'average'.

Did a PET Scan -- Normal uptake in the areas of the brain still working. 

Did a QEEG - No results yet

Scheduled for a 48hr EEG 2nd week of July

And I think going to do another Functional MRI at a different facility. 

Two of my Dr's have come back at a loss. I'm so high functioning that none of the test results make any sense. So 2 of my Dr's are meeting about turning me into a case study. Not hopeful for me - but hopefully to be able to help others. 

My functioning has become more difficult. Inside my head everything I want to do gets broken down into steps. And I analyze all those steps over and over to try to make sure I won't be making any mistakes. The best way I can describe this to outsiders is when using your computer when you want to click on the top left corner - you move the mouse and click - and in my head instead of being the 2 steps it's more like the 1000 lines of code inside the computer that lets you do something in 2 steps. 

And when I work on something that requires real concentration -- It wipes me out. A 30 minute QEEG test and I went home and slept the rest of the day, and the following day I was wiped out too. 

----------------------------------------

And today/tonight a huge new issue has come up - And I'm not sure what to do. My wife and I have no kids. We've been together 8 years. For the first 5 we didn't fight - Not saying we were the perfect couple - we were just older and didn't really have anything between us that was worth fighting over. Since my symptoms began my easy going attitude has dwindled away. The stress of the diagnosis, and the stress of coping with the symptoms have made me so short tempered and angry. 

I try to limit my outbreaks to myself and idiot drivers -- But you all know that we really don't have that kind of control. 

The other night there was a jam in a parking lot. Wife was driving, I got out of the car to go inside and pickup dinner. Some old man pulls out of a parking spot and lays on the horn because I'm walking in front of my wife's car, and my wife's car is blocking the exit - But there are 2 cars behind hers and a car in front - She had no place to go. This guy didn't just tap the horn he laid on the horn for almost 10 secs. I started yelling at him asking him where he expected her to go - and what made him so important that we all needed to get out of his way. 

Any while I was angry - I was under control - just mad. But then my wife paniced and she started yelling at me to Stop It and Walk Away. When I turned to tell my wife to relax the old man bumped the car as if he was going to drive over me - And my wife is still yelling at me - I exploded -- It was all internal - I didn't do anything to anyone, I didn't say anything to anyone, I just walked away to the restaurant -- But I was seething at my wife - I was so angry with her. I almost ubered home cause I was worried if I got back in the car I was going to lose control with her and say things I shouldn't. 

Jump to this evening - I had a bad day while she was at work. And inside my head the things that kept getting worse today all were worse issues than they had to be because of my wife. When she came home from work - she saw I was in a bad mood and started telling me some stupid story about the idiots she works with --- And I just walked away from her. Inside my head I was so livid. I walked away this time -- But I am getting worried that my loss of control, anger, short fuse is getting worse and I don't want to hurt her - Especially when the issues are mine - not hers. 

So tonight she brought up getting her own place. She brought it up because she thinks I am frustrated with her over trivial things that keep upsetting me.

But I was already thinking along the same lines, because I am worried I am going to lose control and hurt her - Not necessarily physically (at this point) but emotionally - The thoughts in my head that I want to yell at her will never be forgotten - And she doesn't deserve that.

We are supposed to go on vacation next week, and tonight we talked about separating. 

Whining about how unfair life is is a waste of time. But dealing with these challenges in my brain that keep becoming more severe is over whelming.

Well that's my share for tonight. Hopefully tomorrow is a better day -- For all of us. 


alz+
Posted: Thursday, June 20, 2019 11:45 AM
Joined: 9/12/2013
Posts: 3549


telling your story here will help a lot of other people, I feel for you regarding the blow ups and the possibility of being arrested or shot.

The very first thing I learned when I joined these boards in 2013 (?) was that stress lowers our abilities at least 50%.

To be waiting for results drives me nuts too so I quit having exams.

You may find that by having your own room you don't have to separate. That was second thing that helped me a lot, to have my own space where I can retreat and hide and recover.

*****

the horn honking thing. People are out of their minds situation and acting out. Your description of doing 1000 tiny steps to do a 2 step thing was brilliant.

The thing of "stages" and the general view of dementia illnesses sets everyone up for tragedy. Because I helped my Dad when he had ALZ and because we had such a meaningful time without hate or rages between us made me think I could have similar experience. Not so much. I did divorce my husband last year because he was crumbling and reacting and making things worse. I could not adapt and our house became an issue as he refused to clear walkways inside or out and it was dangerous.

anyway - it is up to us to figure out how to lower our stress. It is up to us to invent an environment that lowers stress and allows us pleasant time.

I forgot what I wanted to say but once I lost abilities I believed they were GONE. They came back over and over when stress went down. I also found cbd oil allowed me to function in a way like trying to start a car with an empty gas tank, you put gas in tank and the engine runs.

This is a unique space I think for sharing stories and getting ideas. Many of us have had months, years of despair. 

appreciate you sharing your experience and look forward to learning how you manage the explosions. I think we get overwhelmed very easily. Shock and concentrating actually feels like draining fuel from my tank, I can be left exhausted, unable to walk after an intense conversation.

I suspect these reactions are key to finding treatments that work, not just plaques and tangles etc, what caused them and what drains our reserve.

love and courage Dave


alz+
Posted: Thursday, June 20, 2019 11:52 AM
Joined: 9/12/2013
Posts: 3549


cloverofthedale - oh my God. You laughed at my world and made me SO HAPPY!

gemini - yes!

Lots of stuff I do are funny to me and my daughter caught on really early that it is more than fine with me to laugh about it.

Once I was looking for air freshener, picked up a can in the store and sprayed it right under my nose - i.e. into my face. She burst out laughing and then looked so scared! I told her if she doesn't laugh I can't either and we went off in that direction ever since.

Dave - you can never hog more space here than I do, and your space is really good writing.

I pretended i was writing an epic detailed account that would unravel the secrets of the illness until just very recently.

My anger drain off is a lot of youtube talks and stuff. Also watched comedians in middle of night and would laugh out loud. Being able to laugh seems key to me feeling I am still me. There is nothing funny about things going well.


alz+
Posted: Thursday, June 20, 2019 11:56 AM
Joined: 9/12/2013
Posts: 3549


Cathyde

you wrote

I feel so alone.

In those few words you said it all.

Next step is how to make the best of every situation and when you can't come here and tell us about it and get some love.

Please keep sharing, your experience is valuable, your ability to be so concise is important.

We are alone together here, without that I would have checked out and never learned all the thing I have to forgive myself for things that were beyond my control.

much love to you


Iris L.
Posted: Thursday, June 20, 2019 6:43 PM
Joined: 12/15/2011
Posts: 16181


Welcome back, Dave.  Please do not separate.  You are beginning a long journey and it is manageable, if you know what to do.  You will have to figure out how to CHANGE your response to stressors, because there will always be stressors in our lives.  We just cannot handle them the way we used to.  Alan in Colorado, an emeritus member, who was himself a psychologist, told us that stress reduces our cognition by HALF!  So we have to be diligent about managing our stress.  It is not easy!  Work on setting up boundaries, and on stress-relief techniques, such as deep breathing or other practices.  


If driving is a problem, then limit or even stop!


Do not engage with other people!  It is a losing battle.


I do not disclose my illness to others.  They just do not understand, and I don't have the time to educate them.  Only people with a "need to know" should be educated.  The rest will never understand.  Your job now is to figure out what is going on with you.  Either it is a medical problem, a pharmaceutical problem, a psychological problem, or a neurological problem.  You were treated for cancer.  Chemo-brain from chemotherapy is a real side effect.  Read up about that.


If you have Fronto-Temporal dementia, memory loss will not be much of an issue now, but behaviors and judgement and emotions will be.  The best thing you can do is learn about the signs and think about what you can do to ameliorate them.  You and your wife might want to both read the Spouse/Partner board.  All of them are struggling and learning a "new normal."  



Nothing will happen quickly.  Are you still working?  If you think you can work, learn about work accommodations for cognitive impairment.  If not, work on getting long term disability.



You will have to learn new ways of living.  It is doable.  Get treatment for depression/anxiety if this is an issue.  Work on this for at least two to three months aggressively with an up-to-date psychiatrist.  



Keep posting.  Write down this website and your user name and password and keep them in a place where you won't lose them.


I have to go now.  I am not home.  I will read more later.




Iris L.


Cathyde
Posted: Sunday, July 7, 2019 2:43 PM
Joined: 4/21/2019
Posts: 30


I struggle daily, I don't have finances like you, if I did I would go to Jacksonville Florida they have great programs for us and care givers  Google mayo connect and join they have a lot to help for those who can afford it....how do I cope? I cry a lot I am embarrassed at my condition and don't have support my kids don't know how to help I think they love me but the burden is too much for them mayo has lots of help if I were you I would be there as I am stuck home most of the time wishing you the best glad you have a spouse I donot I am very lonely and depressed, just diagnosed in April this y
Cathyde
Posted: Sunday, July 7, 2019 2:46 PM
Joined: 4/21/2019
Posts: 30


what a great way to help I know it's for Dave but I appreciate your kindness
Cathyde
Posted: Sunday, July 7, 2019 2:51 PM
Joined: 4/21/2019
Posts: 30


I use cbd too helps most days I am newly diadnoised real scared can't spell or write very well I am scared and very lonely
Cathyde
Posted: Sunday, July 7, 2019 2:57 PM
Joined: 4/21/2019
Posts: 30


I have pca posterior cortical atrophy a rapid progressive dementia and am very alone and depressed
Cathyde
Posted: Sunday, July 7, 2019 2:59 PM
Joined: 4/21/2019
Posts: 30


thank you no support groups near me