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Guest-book
Please - Leave a comment here just to say Hello, and let me know you stopped by.  Comments often inspire me to write more, and inspire others just knowing we are not alone. bvFTD can be a very lonely disease.  I appreciate all the comments, so don't be shy ; )


Miscellaneous and "other stuff"
If you have a comment that doesn't seem to fit anywhere else - this is the place for it.


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A few words about comments.
Comments are welcome!
The comments you leave are a great motivator for me to keep writing, and are a gold mine of ideas for me to help think of topics. If you have a comment that doesn't fit the post, just leave it here.

For those who are unsure about how to leave a comment, it is really easy. Simply click on the comment link at the end of a post, and you will get to the comment page. The link may say something like "4 Comments", but that is still the link to click on.

I have dementia, so I get confused all the time. The part I found most confusing is the place to leave your name because there is a space for a website address. Here is the big secret: You can type in any name you want, and you can leave the web address space blank!

Sorry!  A while back I found it necessary to confine comments to those from people who are registered. The reason is because as my blog readership has increased it seems every slimy spammer on the net wants a piece of my bandwidth. I was getting 30-40 spam posts in my comments every day, and it became too much for me to keep up with.

The registration process is very simple, and you may already have a registration somewhere that will work. I will never sell your information to any spammer, or use it for anything, so you may feel safe. Again, I apologize for the inconvenience, and if and when Blogger's spam filtering software allows me to stop the malicious posts from ringing in on my cell phone I will open it up for "anonymous" comments again.

There are some additional instructions here.

This is the place to experiment and try it out. Go ahead, and post a test comment here. Post several if you want. I will zap the tests occasionally, so give it a try.

Say "Hello", and let me know you visited. 

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57 comments:

  1. Test of annony-mouse comment

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  2. this would classify as a "nonymous" comment I guess since I signed it.

    I too have been trying to procrastinate but for some reason I keep putting it off.

    Like keeping up on my favorite blog-which I am now up to date on, once again. I haven't added much to my work diary in a while either. Fortunately, I am in between the split shifts, I have chosen to goof off and not perform useful work so here I am adding a comment.

    This blog is extremely useful to any of us who have known you for any length of time. It is almost depressing to consider the wastage of cerebral excellence. These writings, as brief as they are, reflect the wondrous intelligence that still lurks there. Like a photograph or a memory, one tries to think of the positive things when musing over a dead body. Granted, you aren't dead yet and neither am I (although I had my excitement with that only a few short years ago). I have always been amazed how you know all the critters.

    Thank you for keeping this blog running. It makes up for the phone messages and emails that don’t get returned like in the old days. (HAR!!! OLD DAYS!!!! Like during the GAMA-wars!!! What a nice thought to interject…)

    On the nasty personal front: You will not have your home long. (This is just a fact; not a threat). Are you progressing on those plans we discussed several months ago? My spidy sense cropped up and mentioned I should probably poke you on these issues about now. (Har!, the spell checker wants to change it to ‘spiky’ sense. That must be that prickly affinity for cacti and bad jokes.).

    Personal or not, it was also appropriate to publicly poke you.

    I’ll take the rest of my comments off line.

    Paul

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  3. Altho I don't know him, I agree with Paul - follow thru on those plans. We talked very briefly about it the other day, but it needs to be done while you can still think it thru and do what YOU want to do. I'm just sayin'!
    Joan

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  4. Thank you Crazyegor and Matilda.

    I appreciate the reminder, and the concern. I am working on it, and plan to have everything in place by the end of the year. Specifically the Power of Attorneys, Will, and any additional medical instructions for those who may wonder what we are talking about.

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  5. Has anyone else had trouble signing in to leave a message, either in the guest book or on the blog? I have to enter my password a minimum of twice before it will take. Just curious is anyone else experiencing this.

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  6. hi, my name is chris and i live in big bear lake ca, and have no family/ friends, and dr. that come up 1or times monthly. i heard about a clinical trial at ucla and did everyhing to get my records there/ now i hear it is no longer an option. what to do now/i just don't know!!!

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  7. Thanks for the comments Chris. I had a similar experience being closed out of a study at the Univ of Michigan. I was very disappointed at the time, but now it doesn't matter to me. I just take it one day at a time, and some days are better than others.

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  8. Hello Lee. I live in Germany. Please keep writing. Good Luck to you.

    Jan

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  9. Lee,
    I was directed to your blog by the ftd-picks.org group, and am so appreciative of your writing. I am awaiting an official 'diagnosis', but your experience so, so mirrors mine. I am (or was), an administrator, or 'high-function' person, and have simply been losing it over time, especially the last six months. I have read everything on FTD that I could get my hands on, and could not quite see where I fit the descriptions, also because I was not seeing the behavioral issues commonly associated/described wth bvFTD. I wondered whether if I worked in a less stressful or demanding job, if I would have noticed something being wrong... Your descriptions of missing time, going after a handkerchief and ending up with a T-shirt, are me too. So, I appreciate your writing. Somehow I simultaneously grieve for you, but find encouragement at the same time. Until I can bring myself to write my own story, I will share yours with my friends and family as an example of life as I know it now. Please keep doing it! I will be lifting you up in my prayers for this journey. Thank you.

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  10. Thanks for the comment and encouragement to keep writing this blog.

    My best wishes go out to you and yours.

    Some days are better than others.

    -Lee

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  11. thank you for this commentary. My long time partner and friend has "something". the psychiatrist said finally that it looked like FTD to her..so that is what we are going on. Your progression, tho faster than "ours" is very similar in details. the biggest problem is that for a short conversation on a social level she seems fine..so not much credit is given when she falls apart.

    Being with her at all doctor appointments has made a differnce in her stress levels, now she does not have to remember anything..so I reccomend that to all others reading your blog.

    Please keep commenting, we all can benefit from having your insight

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  12. Thanks for the comment.

    People tell me the same thing - that just talking to me they cannot tell anything is wrong. Sometimes it is a little frustrating to seem just fine "in the moment", but then the next day barely remember anything that happened. The symptoms are always there.

    It gives me peace of mind to have someone go along to my doctor appointments, and it is even more helpful if they make some notes I can reference later.

    Some days are better than others.

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  13. Hi

    I don't like to post things most of the time. I tried using the FTD forum and it mad me very angry. I felt that everyone was wining poor me ( Mom, Dad, Husband or Wife) was acting up again. Try living with it, we that have it know what it is like.

    it is odd most of the few people i have met had high IQ's ( Mine was 171) well educated ( I have 2 advanced degrees one medical) . I have had it for about 4 years , but who really knows I had odd symptoms before that where not normal for myself . I took about 2 years to come up with a diagnosis, even though even that is always it seems to be changing. from Parkinsons to FTD or just psychotic.

    My writing is horrid, I miss patterns when I write and do not notice them and I ramble. I too live alone and try to live a "normal" life as much as I can. It is hard to have many friends as I am prone to anger and the usual symptoms. Most of the time I tell people I have parkinsons as the sigma with the ford Dementia is to many people saying you are insane.

    People are surprised i can drive, my judgment is OK while doing it, but I only travel off hours a few at a time.

    Good Luck

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  14. lee I found out that I have ftd in june 2010 I am 53 years old live in central michigan I was a nurse aide I still drive and I try to still do daily things like you some days are worse than others I hope to get my own apt in the spring for as long as I can. I was married for 23 years am currently getting a divorced I have 3 children and 7 grandkids. I will be reading your blogs and others too to get more information my prayer are with you linda daniels

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  15. I think it is important to know how humiliating the disease really is to ones self. I started acting "odd " around age 49 ( I am 54 now) some of my behavior included:
    Buying 2 Motorhomes
    Joining 2 Golf clubs ( around 50k each)
    Signing over my house to someone that said they were from my Church and needed help ( Only owed 100k on it and was worth into the low 7 figures)
    I bought 2 cars and 3 Motorcycles
    Giving away a motorhome to someone that was a Meth addict 'to help them out" my son told me to do it he was 12 at the time
    I had of course lost my job, and my "long term" disability was only a year since they did not know what i had and it "could be"
    depression which was not covered

    I had cashed in my 401k since i had to wait a year to get on SSDI and paid out of pocket for medical bills and all the expenditures for odd things.
    I am now living on just SSDI since the IRS took the rest of my 401k for failing to pay taxes. maybe I did or didn't I have no idea. A lawyer at Church and a CPA helped me with my 24 yr old son as my guardian and I get an allowance

    I tried all the drugs the only one that helps at all is Xanax , that helps with the aggression. My hobby was martial Arts and I did it for 30 years and could hurt someone easily. The urinary incontinence is a horrible issue I tried attends but now just change my underwear several times a day. Hygiene is horrid, no bath or shower for a week or 2 is normal. I pretty much look like a homeless person I suspect, and am a bit of a recluse. Not that long ago I was wearing a suit and running a company it seems.

    A saving thing for myself is my computer and my iPhone everything I need is on it, from medical info to a GPS if lost. I was going to get married at one point again ( My wife passed at 40 from CA) , but the symptoms were just starting and I knew something was amiss. I called it off. by chance I saw her again a couple weeks ago she did not recognize me at first. It was awkward to say the least.

    The few friends left ask me on occasion how I cope. I take it day to day and i have no expectations. I no longer am looking to get well. I enjoy music , the summer and longer days and simple things. The muscle pain diminishes when it is warm and I can do more , and for me that is close as ii gain hope I am not suicidal as I suspect many are. I am living through it and experiencing this odd disease, more or less as a 3rd person. When the lights go out as they will for all of us someday I will know i did my best and didn't quit.

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  16. Thanks so much for sharing your stories and comments. There is so very little first hand information available.

    All we can do is keep trying to live each day as best we can. Every case of FTD is different, but we all end up in the same place.

    Some days are better than others.

    -Lee

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  17. Aloha,

    My stepmother-in-law was just diagnosed with FTD, found your blog and thought I'd share a thread I've been following re: Dementia and diabetes. Some research is showing a connection with hyper-insulin states and formation of tau tangles. Anyway if you are interested here are the links I have found so far. All the best.


    http://www.nhs.uk/news/2010/11November/Pages/diabetes-drug-tested-in-dementia-study.aspx?sms_ss=email&at_xt=4ceca5c789bb10ec,0

    http://www.medscape.com/viewarticle/725300

    http://www.medscape.com/viewarticle/715037

    http://www.medicalnewstoday.com/articles/209348.php

    http://www.medicalnewstoday.com/articles/52716.php

    ReplyDelete
  18. Thanks for the comment Kevin.

    What a coincidence! My doctor and I are currently discussing starting me back on Metformin ostensibly because I am Diabetic. I just completed my blood tests last week, and even though they are in the normal range it is being considered. The problem is nobody has any clue as to what might be an efficacious dose. Thank you for the great links.

    Best of luck to your Stepmother. Some days are better than others.


    -Lee

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  19. Hi Lee,

    I'd be interested to hear about your experience on Metformin, if you decide to take it. Here's a link to an article on this medication, although not specifically with respect to brain function.

    http://search.lef.org/cgi-src-bin/MsmGo.exe?grab_id=0&page_id=522&query=metformin&hiword=METFORMINS%20metformin%20

    I tried to find out more info about the nasal insulin, not much success, but regardless, my stepmother-in-law and her husband aren't too interested in alternative treatments, so I let it drop.

    I suspect that, like autism, there are many pathological pathways to a common disease state, hence the different types of dementia. All this makes finding statistically valid treatments difficult, and evaluating anecdotal experience even more problematic.

    Enjoy the good days, weather the bad,

    Kevin

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  20. Thanks for the comment, Kevin.

    Though I have taken Metformin in the past for my Diabetes Type 2, I am not currently taking it.

    I am considering starting it up again due to the recent research on the protective effects it may have on brain cells. Right now I am in the midst of researching:
    * Axona
    * MCT Oil
    * Coconut Oil

    Because they all seem to work on the exact same pathways as Metformin. I am still looking into it as there is a large amount of complex, and sometimes contradictory, information.

    My early research indicates adding Coconut Oil to my diet can only be a benefit. That is probably the course I will consider first.

    Thank you,
    -Lee

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  21. Lee,

    Thank you for keeping this blog and I hope you can keep it for years to come. My mother passed away last month from FTD. Even though I had known something was very wrong for years, she refused to acknowledge that there was a problem until March. By that time the FTD was so advanced that I am not sure she ever really understood what was going on.

    By you keeping this I may be able to get a little understanding of what she was thinking and feeling. We faught terribly for the 18 months before her diagnosis. She then became mute and wouldn't talk about what was happening. I will never know if she understood how much I loved her. FTD took that from us. Please keep writing. Your sons will appreciate it. I would give anything to have something like this from my mother.

    I will be back and best of luck. You have a great attitude and are a role model for us all.

    Karina

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  22. Hi
    I'm a Swiss doctor working in long term care since over twenty years. I happened to find your site looking for pictures of frontal brains.
    I'm very impressed by your story. Yes, every case of FTD is different! Every case of any dementia is different.
    I currently have a patient who is quite happy though his FTD is rather severe. He compulsively eats any sweet stuff he can get hold of - he's diabetic too! But he's fine most of the time, walking around, smiling at you. Of course, I have seen sadder trajectories than his.
    Keep your good work going. I'll come back regularly.
    Good luck
    Luc

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  23. Lee,
    You give me hope :) and as you know many days a little hope/ humor goes a long way!

    I am going to ask you a hypo: Knowing what you know now, the ultimate outcome of the disease... You are given the power to turn back the clock- to pre diagoises, Would you choose to know? Would you want to be diagnoised?

    My brother has bvFTF- genetic, 17th chromosome mutation. That gives me 50/50 odds.

    I know I have it. It is the large pink elephant in the room. I read about what is going on in your life and you might as well be writing aboout my life. Hell, you are! we are so alike.

    Except I am female, have 2 small children and worry that an official diag will somehow bite me in the ass if my husband decides that this was not the gig for which he signed up.

    I get out bed because of my children.

    Would you do it over again?

    Jennifer

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  24. Thanks for the comment Jennifer.

    You pose an interesting question. Every case of FTD is different. For me, "Yes!" I would want to know. If I could turn back the clock - I would want to know even sooner, so that I could have planned better, and made better arrangements.

    Some days are better than others.

    -Lee

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  25. Thanks for the comment, Luc.

    Having read about the carb-craving issues with FTD, and insulin resistance in the brain, I wonder if the common symptom of craving carbohydrates is because the brain is literally starving for energy. I have gone with this, and try to limit my carbohydrates similar to an Atkins-style diet supplemented with MT from Coconut Oil to boost ketones as an alternate energy source.

    As far as I know there is zero research to back this up, but I am not going to sit around waiting. A healthy diet isn't going to hurt anything.

    -Lee

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  26. Lee,

    I tend to reread the comments left by others w/ FTD. I am confident that I am not the only reader interested in their well being and health.
    Is it possible for you to create a chat room, or what ever the correct forum term may be... A place where we could meet, chat, vent, offer suuport and share?

    I am not too computer savy.
    Back in the day when I worked, I had "people". lol
    I am sure that these people could of set up such a thing, but alas; it is just me and I have not a clue how to do such a thing.

    Thanks!
    Jennifer

    BTW- I am all set for the official work up!

    ReplyDelete
  27. Lee,
    As way of example... I added my pic to "followers", but when I posted my pic did not appear by my name.
    ? Incapable of connecting the two!

    So you should be one to set the chat room in motion.

    Jennifer

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  28. Thanks for your comment Jennifer.

    When I checked, there was not a good way for me to add a forum or chat to this blog. All that I saw were too much hassle for someone with FTD to manage. That is one of the trade-offs for it being free. Comments or email are the most direct ways to interact. I see your picture worked, so maybe it just took a while to show up. Good luck with all of your testing. Don't forget, like the Door-mouse said, "Feed your head!"

    -Lee

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  29. Dear Lee,
    Today I stumbled upon info concerning FTD and am certain that as I observe the changes in my behavior the past year, as I listen to what my hubby and 18 yr old son say concerning me, and as I read your personal testimony, I probably have this disease. I have emailed the medical info on FTD:
    http://memory.ucsf.edu/ftd/sites/all/files/article/ftd/MAC_FTD_Primer.pdf
    to my Dr and have an appt to speak with her on Monday afternoon. She is an integrative medicine specialist in whom I have full confidence.
    As I read your blog I am optimistic in these ways:
    -as the disease progresses I remain fairly oblivious.
    -I have a faithful hubby that will help me monitor my behavior and "cover" for my faux pas. :)
    -this finally gives some explanation to why those closest to me keep wondering why I am SO different...I simply don't see it and its kind of fun to be less inhibited, fearful, and anxious.
    -my time of full cognition is very short and it helps me think how to best use what I have left.
    -I know Jesus as my personal Savior and Lord....this means that eternity is certain and until then His grace is sufficient for each day. I can rejoice in His plan for me because He has promised only good.
    -I have many loving friends and family members that will have their opportunity to fully exercise patience and understanding. I am certain they will!
    I would love to connect with anyone that is interested in sharing. What is some way this could be done?
    NKG

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  30. Thanks for the comment NKG.

    Best of luck with your Doctors visit. I really hope everything works out for the best. It sounds like you are making plans, and have support. That is good, no matter what the diagnosis might be.

    Some days are better than others.

    -Lee

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  31. thanks so much for creating your blog
    My mother has FTD and I am always researching...
    you amaze me with your writing, humor and scientific knowledge
    Please write a book!
    have you read Still Alice?
    also any info on where and how I can pursue genetic testing for FTD?
    have you had functional MRI?
    thanks again...keep it up!

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  32. Thanks for the comment Mayde

    I have never heard of "Still Alice" I will look it up.

    I have no idea about getting genetic testing either. My cheap-ass insurance company pretty much abandoned me when they found out I had Early Onset Dementia. They do not care what kind, or anything about it. As far as they are concerned, it is all the same. We get worse - and then we die. Frakkem!

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  33. be happy and love. kiss

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  34. There a some similarities (and also some differences) between your case and mine. I had an MRI scan which showed structural abnormalities. The SPECT scan confirmed there were blood flow problems in the same areas which looked abnormal on the MRI scan. EEG showed some dysfunctional patterns. All other tests (blood tests and cerebrospinal fluid from lumbar puncture) showed nothing. The psychoneurometric tests showed significantly reduced function in certains domains. The neurologist, who sdpecilaises in dementia, confirmed me as having dementia and probably of an Alzheimer's type. Aricept helped.

    BUT something wasn't right.

    Like you I found stimulants such as ephedrine or caffeine (4 or 5 cups) helped. The literature on dementia says little about stimulants helping with dementia so I thought the stimulants may have been providing improved general cerebral function and this was sufficient to overcome some lost function due to the brain atrophy from dementia. However I observed I was fluctuating too much and regaining a lot of function during my good moments and this couldn't be accounted for by the dementia team (even Lewy body dementia doesn't fluctuate like this). Despite all this, my specialist early-onset dementia team assured and reassured me that fluctuations like mine sometimes happens but I just felt they were not properly observing the nature of the ups and downs. Nor could they account for why I improved over a period of months as I took increasingly large doses of blood pressure medications. Vasodilators like alcohol made me clearer. Single dose aspirin gave me much improved clarity within an hour or two.

    I found a vascular connection but the early-onset dementia team were not convinced. At my insistence they have referred me to a national specialist on dementia (I like in the UK). I personally arranged a doppler ultrasound test to see if there was a narrowing in the carotid arteries to the brain but this came back ok.

    To cut a long story short, the problem seems to lie in blood flow to the brain but not in the usual place but in the common (lower) carotid. I had been ignoring pesky chest and stomach pains which turned out to be an unusual indicator of something vascular.

    (a) The abnormalities in MRI function may have been due to long term nutrient starvation of the brain but it seems it is also possible they were due to a congential abnormality which had no consequence on brain function. In other words, although the abnormalities were there they were nit relevant. (b) The SPECT scan had shown blood perfusion problems but their intensity and significance could not be quantified. Perhaps they too were irrelevant distractions. To check this I would need another SPECT to see if the scan looks different once the lower carotid blood flow is fixed. (c) The neuropsychometric tests had shown significant neurological problems but such tests can't identify a cause. (d) The EEG showed problems which were likely caused by the acute confusional states (clinical delirium) I was getting.

    The moral of my message is ... it may look like dementia, smell like dementia and feel like dementia but much of the testing and diagnosis is by exclusion. So make sure you don't have some other primary cause of the problem. In fact, I could actually have early-onset dementia but it could well be clincially insignificant which means a presumptive and erroneous diagnosis of dementia served only to halt further investigations. Alternatively, my dementia coud be real but slight and the dysfunction it causes was compounded by a far more significant additional factor.

    I had resigned myself to living with dementia. I got home nursing visits and lots of support. Fortunately I found what else what really giving me trouble. I had had the pesky chest soreness for over 10 years and in that time my mental functioning got worse and worse until it was looked into as I have described.

    You may be very different but I have written this in case you find it helps provoke further thoughts.

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  35. When your words going away... get the app Proloquo2Go. Online tells how to use. Also... get a red laser. When you go for fast food... like KFC... easy to tell you what you want. About the Ritalin... I get 3 months at a time. The insurance should less $$ and you less $$. About the book: What if it's not A... Page 172 bottom... arrggghhh... I might Enjoy dusting or folding lauundry. Too much info. Ha ha ha ha ha. We have to laugh this... or not....

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  36. Hi lee,
    My father and his brother have been both diagnosed with FTD and my siblings and I have been told we have a 50% chance of having it too. I was wondering what lifetsyle changes you might recomend to try to prolong the symptoms if we should have it. I know that testing never really gives you a negative result and I am a 35 year old mother with two young children. I am interested in any diet, exercise, vitamins and herbal remedy suggestions you might have. Im guessing giving up the alchohol might be a good start.

    ReplyDelete
  37. Thanks for the comment, Ann.

    That also means there is a 50% chance you do not have it. A much better-sounding prognosis. Of course every case of FTD is different, but I try to eat foods with very few added chemicals. That means I cook most things from scratch and avoid processed stuff. Most of the supplements that show promise are general anti-oxidants. I also have pomegranate juice every now and then. As for the alcohol, I have never seen anything that says giving it up is beneficial unless it is used in excess.

    Some days are better than others.

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  38. Hi Lee,

    Thanks so much for your response, it sounds like a great idea, I love reading about your personal account and all of the other messages and advice, it's all really interesting, especially in relation to my dads prognosis, we are just starting to discuss his medication, so it's all really helpful. Keep writing and best wishes. Ann

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  39. Hello Lee and all reading.....

    I hope I figure this out.
    I was diag with EOD in March, by April and the 4th second opinion, was probable FTD.
    Because of good/bad days I float in and out of denial that anything is wrong.....dispite the fact I had to leave my job, lost my townhouse and am now living with my daughter and her family...nothing is wrong with me LOL

    So much has happened so fast, especially all the changes in my life, it is hard for my family to understand that 'just accept it' isn't always that easy.....although they learned this tinking from me, always Pollyanna.
    I think it will be so helpful just to have otheres to talk/chat/blog with that are going through the same thing.
    Yesterday was so different, anyone had this happen? This is unusual since EOD/FTD because I used to go alot but had a lot of trouble getting in motion, I want to do things, then nothing happens, but yesterday I started cleaning and couldn't stop....I would see something else and just kept going, like compaulsive I didn't eat, stop, just kept going. I was very happy but at times felt like I couldn't make myself stop.

    Well, I have never 'blogged' or anything like that, so we'll see how this works. I am happy to meet you all!
    Lee - you are awesome! Loved you summer vacation pictures...wow looks like a GREAT time!

    God Bless All
    Terry

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  40. Thanks for your comment, Terry.

    It seems a lot of us share the difficulty of getting things done, or getting things started. Thinking about it is just as good as actually doing it.

    I tend to be kinda single-minded when I finally start a project, but when I clean this big dusty house it is easy to stop - Har!

    Some days are better than others. All the best ; )

    -Lee

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  41. Thank you. In many ways it is so comforting to read about others who are slowly losing bits and pieces of their brain. The hardest part is knowing it is slipping away. Things like going from reading the whole Harry Potter series in a week, to not being able to comprehend a paragraph about dressing for a first date. Or being an excellent speaker, never worrying about vocabulary or pronunciation, to stumbling over easy words or not being able to retrieve a word. Going from a doctoral student who was entering the final phase of preparing a proposal for a dissertation to not being able to pass a class. It's lonely. It's scary. It's depressing.

    I don't have a diagnosis yet. I had an MRI which showed lesions in my brain and on my brain stem. I am working with a neurologist who (along with my general doctor) says there is certainly something going on neurologically. Waiting for approval from the insurance for a battery of psycho-neurologic tests.

    I finally let my husband in on the struggles I was having. I have quit driving for the most part. Those damn curbs jump out and catch me. Some days I get a lot accomplished. Other days I am busy and get nothing done. I wander from room to room trying to figure out what in the heck I need to do. My concept of time is really whacked. What I thought I just did was months ago.

    Anyway, I have rambled enough. Thank you. I don't feel so alone.

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  42. I am not sure if I am doing this right but here goes nothing. My name is Corinne. I am 41 yrs. old and currently helping my father take care of mom who has FTD. I am very concerned because I am showing a lot of the symptoms she showed about ten years ago and those that you talked about. I lost my job in the fall due to my inability to function. I have been diagnosed for several years as bi-polar but was recently diagnosed with generalized anxiety disorder and panic attacks. I have difficulty off and on with remembering words, enough so that people have laughed about it. I used to be very responsible financially but can't even seem to get bills paid now. I know that it can be hereditary and looking back we believe that my grandmother may have had it also. Don't really know why I am leaving this on here but I guess it would just be nice to have some people to discuss the concerns with that will take it seriously instead of just labeling me "mental". I can be emailed at corinnebaileyk@hotmail.com

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  43. I just found your blog thanks to it being mentioned in a Metafilter post.

    http://www.metafilter.com/113094/Dementia-be-Damned

    I write a blog called Dementia be Damned which is about my intellectually disabled sister's dementia diagnosis.

    http://dementiabedamned.blogspot.com/

    Thank you for writing your blog and providing insight into your dementia experiences.

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  44. Good Grief...grin. It took my 10 minutes just to figure out how to leave a comment and then once I did I couldn't remember if I had a Google Account only to be told when I set one up that there was already one which I couldn't remember the password for so I had to change the password. Then I lost the site and it took me another 15 minutes to find the site. So here I am again...hopefully it will work this time...grin.

    So anyway, my name is Corinne. I have not been diagnosed as of yet so it is completely possible I am just completely off my rocker but the few posts I have read are dead on. I lost my job in November and my last months of work were identical to yours. I have moved home to help my Dad with my Mom who has FTD (we don't know which variant at this time). I have asked that we get genetic testing done since I am already showing symptoms that are related. I have trouble finding words when I need them and get stuck on words repeating them over and over. I have to concentrate on simple math, this from someone who took college math in high school, got an A in calculus and has a AA in accounting. I can't even keep my own checking account straight now.

    Don't know where I am going with this but wanted to let you know that I am finding your blog very helpful, inspiring and soothing for my soul.

    As you can imagine it is a bit crazy in this house with a mom with FTD, an 11 yr old son and me who we have no clue what is going on. Kinda like the blind leading the blind around here. Our sense of humor gets us by though and many days we just sit here laughing at each other.

    Judging by the problems I had this time I will leave my email address. Lord only knows if I will find my way back here again...grin.

    corinnebaileyk@hotmail.com

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  45. Thanks for your comment, Corrinne. Sorry you had difficulty getting it to post. There must have been a delay because it posted about 6 times, and I removed the extra copies ; )

    I had to change the posting to only those registered because I was getting 20-30 spam posts a day trying to advertise everything from drugs to porn. They all kept ringing my phone. Maybe I will be able to open it up again later, but for now I can only apologize for the inconvenience.

    Good luck, and best wishes for you and your family. Some days are better than others.

    -Lee

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  46. Hi Lee and other FTD sufferers

    Don't lose hope!

    See this:
    http://pharmabiz.com/NewsDetails.aspx?aid=71090&sid=2

    I've been following this company TauRx Pharmaceuticals for some time and have read many articles on their trial drug, rember and LMTX. The science behind it is compelling, and the phase 2 trials are robust. They are now at the point of starting the Phase 3 trial for FTD. It is safe and worth a try.

    You can check out the company website here:
    http://www.taurx.com/

    All the best!

    Regards.

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  47. Hi everyone,

    Just a synopsis of the above FTD Phase 3 trial announcement, for the easy reference of readers:

    "A new global Phase III clinical trial will test LMTX, from TauRx Therapeutics, in patients with a type of Frontotemporal Dementia (FTD) also known as Pick's Disease. The study focuses on a type of FTD known as behavioural-variant, or bvFTD, which can cause early changes in personality and loss of empathy. A large percentage of these patients have a specific pathology that involves abnormal collections of tau protein in the brain.

    The Phase III double-blind placebo-controlled study is designed to evaluate the safety and efficacy of LMTX, a second-generation Tau Aggregation Inhibitor (TAI).

    The study aims to confirm the results first seen in the pilot cases in a larger controlled clinical trial in bvFTD patients over a 52-week timeframe. Participating study sites are located in Canada, US, Australia, Europe and Singapore. Because the condition is relatively rare, TauRx was granted Orphan Designation for LMTX in 2010.

    The TauRx team have discovered that LMTX could also have beneficial effects on other proteins which aggregate abnormally, including TDP-43 in FTD and synuclein in Parkinson's disease."

    Hope this helps!

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  48. Blessings to you Lee. My husband has FTD and was diagnosed in 2013. You seem to be doing pretty well communicating 5 years into this. Thanks for the blog, its helpful.

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  49. Lee, Thank you so much for writing this blog. I came here maybe a year ago, and have been back recently to continue reading. Although I've not been formally diagnosed, I suspect this may be part of my issues. I wanted to let you know there is a problem with the blog in that there are two Pictures that obstruct the writing, and this seems to be on every page. The first one is a large black box with pictures of the brain in color, the title says something about how stimulants act like cocaine in the dopamine cells. The second one is just a little farther down and its a large box with information about patients with behavioral disturbance admitted to a psychiatric unit. One cannot read what is on the page under these boxes. Please keep posting, the information you share is most helpful.

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    1. Thank you for your comment, Carla. I checked on both my phone, and computer, but did not see any pictures blocking anything. It is a little annoying that the header stays at the top on my phone, but that is not under my control. You did not mention what platform you were using. I checked with an Android phone, and a computer running Win 10. I wish you all the best, and many good days.
      - Lee

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  50. Lee
    Here goes.... I also have NEVER posted to a blog in my life. I was diagnosed with FTD "picks" 2 years ago. Forced to sell my financial planning firm for half it's value and go on SSI. I just qualified for Medicare last month. I usually tell friends or clients when they ask that I now make monthly what I used to make weekly. As you have said a number of times some days are better then others. My neurologist is from Lahey Clinic in Boston. I will turn 60 on May 22nd and physically in good shape. I'm not on any medicine really. I have been married to my child hood sweetheart for 40 wonderful years. We have 3 wonderful children and 4 grandchildren and 4 step grandchildren. I guess the only psychological diagnosis I ever received was I suffer from Apathy. My wife likes to say I just don't give a shit. The early tell tale signs or symptoms were, forgetting passwords at work to log onto secure sites, a sudden lack of energy in the middle of the afternoon, even after drinking 5 to 7 cups of coffee a day I felt sleepy. I actually closed my eyes and dozed off in the middle of dictation to my personal assistant of 23 years. Everyone saw some erratic behavior. I went from spending $200 a month on my model airplane hobby to over $1,000 saying things like when I retire I will have lots of planes to build and fly. I had to have every mini power tool and gadget out there. I replaced computers every 6 month to always have the fastest and latest technology. etc....
    My primary physician ran test after test and proclaimed I was fine, perfect health, fit as a fiddle. My wife kept saying he is NOT himself. I had little interest in being part of my family game nights. We are a close family usually playing games together 2 nights a week. Instead I sat on the computer buying things on E-bay and discussing politics on Facebook. Being highly intelligent and having several degrees myself I was able to look pretty normal to most people, most of the time. After the diagnosis I realized I was forgetting words, making judgement errors, as well as math errors. I immediately took the advice I had given so many of my older clients and by 58 years old had transferred my assets to my wife. Reworked my will, updated my power of attorney, as well as my health care proxy. This stuff is important and should be done quickly while capable of planning.
    I had traveled extensively before my illness taking 3 vacations a year on average for the last 30 plus years. I don't regret not doing anything in my life. I have found peace and joy being around family all the time and I no longer miss working at all. That was probably the hardest thing I faced the first year after the diagnosis, not being allowed in my own office or talking to my clients. (part of the deal/sale)
    I feel good putting my thoughts down on computer in this blog. I have never been a great writer just a numbers guy.
    I wish you and everyone else going through this process the very best and I will be looking on this site every few days to see what people think.
    As Lee says over and over some days are better than others.
    -Carlos

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    1. Thanks for you comment, Carlos. Yes, your story is very similar to mine. I also suffer from apathy, but motivation to do anything is also an issue. Some days are definitely better than others.

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  51. My wife and I are PT caregivers to her brother with FTD. Thank you for your blog.

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  52. This comment has been removed by a blog administrator.

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