I sent an old friend to see my specialist, he just called

[Omaha Steve]

We have known each other since the seventh grade. I saw him 2 weeks ago. I was talking about my FTD. He had some pointed questions. He got a funny look. I recommended my specialist. He did his mental tests and had an MRI. Yesterday he got the diagnosis. I won't be around tonight. I'm going over for support.

This is probably a good time to say what drove me to see a specialist. Two years ago I was sitting at my desk at work. I was reading off the PC screen. All of a sudden I didn't know what the letters and numbers on my screen were. It was like looking at hieroglyphics. I thought I was having a stroke. Because I worked the front desk at the Omaha Police Dept, I hit the direct button to 911. We went over my symptoms. I was having speech issues by now too. The warning signs cleared up. I was driven to emergency medical. It was determined it wasn't a stroke. Then they told me the kind of specialist I needed to see. They probably knew, but didn't tell me what they thought it was.

There had been other signs of something wrong. This was the one that made sure I went to the doctor ASAP. That is what my friend was going through. IF any of you have experienced this, see your doctor ASAP!

http://www.theaftd.org/

I have periods of these symptoms. Eventually it will become permanent. I will not be able to communicate in anyway.

Regards,

OS

[elleng]

1. Thank you for the information, Steve,

for all you do for so many, and for YOU.

[malaise]

2. You're a good caring, sharing person

[kelliekat44]

3. Really appreciate your posting this. Valuable information. Positive thoughts go out to your friend

[slipslidingaway]

4. Thanks for sharing ...

may you and your friend be one of 'luckier' people in this population.

One day at a time.

[MuseRider]

5. Good you could help

and I bet you will be wonderful support for your friend.

I was away from DU when you talked about this when you were diagnosed. I knew something was wrong but never wanted to ask. I hope you are well now and will remain so for a long time. I know little about this so thanks for the link.

Be strong and as positive as you can. Helping always helps you, as you already are quite aware.

[nilram]

6. Thanks for your every post on DU. Good luck with this.

[TBF]

7. I know what it is like to be

diagnosed with serious conditions. Congenital heart defect and auto-immune here. I think the emotional side is much harder than the physical side, at least for me at this point. ((Hugs))

[Babel_17]

8. Thanks for your honesty

Hoping for you to have the best possible outcome.

[haikugal]

9. I'm one of many who are happy you're here Steve.

Thanks for the information and all the best to you and your friend.

[SoapBox]

10. You're a good man, Steve.

Care and support...to both of you.

We loves ya.

[dorkzilla]

11. He’s lucky he has you as a friend. I hope you can both beat this!

I’ve been experiencing a lot of confusion myself lately. I forgot where I was the other day and I was on my back porch. The MS specialist I saw has re-ordered all new MRI’s because she sees lesions typical for MS but there are other lesions she’s not so sure about. So I’m still in limbo and won’t know anything concrete for another 3 weeks.

I’m hoping I don’t need my brain in the next few weeks.

[LiberalArkie]

12. Steve, back in 1999 i went in for a bypass. They said I might have a little memory loss.

I had supported myself for 15 years writing computer programs mainly database type. I got home and immediately wondered why I had so many tv screens and keyboards and stuff that I did not know what any of it was. 10 years later I was able to pick up a little bit, but my friends say that I must have lost 99% of what I knew. I don't have any memory of my brother who is one year younger. I have a little of my sister who is 9 years older. I really don't have much memory of the first 50 years of my life. Things that I did second nature, I had no problem with though and sometimes freaked out wondering how I knew how to do that.

I scared myself a couple of years after that when a friend asked me to go target shooting with him. I told him I had never fired a weapon before. But he loaded up a glock and showed me how to sight it and how to hold it. I put all the shots in the center. He put the gun away and we both left very freaked out. The brain is a very strange thing.

[Duppers]

15. Thank you!

You've explained to me why my brother is so different now. I had only somewhat ofan idea what a bypass could do. Once an atheist, my brother is now a RW Christian (exposure) and doesn't remember a lot of personal history between us.

[arikara]

31. I had no idea a bypass could cause this

the Mr had a bypass a couple of years ago and I don't notice any big memory loss like family or past events, but he does have trouble figuring out things that he used to be ok at. Like small household repairs seem to be a real trial for him yet he won't consider getting somebody other than me to help him which causes lots of frustration for both of us.

[LiberalArkie]

33. I think they have better filters on them now to prevent the bubbles.

In my case it is like I don't have an index built right. Think of the library card catalog file and someone took some of the cards. If you needed the memory that was one of the cards that was missing it would be hard to remember. But if I remember something else that is linked to that original memory, I have it.

Like trying to remember going to a restaurant with certain person. I can't remember who or what restaurant. But I happen to think of the street and picture it, I can then sometimes remember the restaurant and the person.

Naturally I have no idea of what memories I am missing. I did have a lady when I went to my home town once, sunup and start hugging on me and kissing. I had no idea of who she was at all. Just had to play along.

[winterwar]

13. Unrelated, but

You are my favorite poster on DU. I don't post much, but I've been a several times a day reader for years. Thank you for all of your posts on labor issues. You really keep your ear to the street and post some extremely relevant info. Thank you. Labor issues are extremely important to everybody I know. Unfortunately they don't seem that important to a large portion of the Democratic party these days. Keep up the good work. I hope things go better than expected with your health issues. Your posts have helped educate a lot of us who have never heard of this condition. Best of luck to you, and your friend. Thank you for enlightening everybody about this condition. Solidarity.

[magical thyme]

14. I had words turn into squiggly lines on the page once, back in 2010 in my

chemistry class. In my case, though, I knew immediately that it was reactive hypoglycemia. Luckily, too, it didn't affect my speech so I could explain what was happening and get immediate help. My lab partner found an orange in the bottom of her backpack, and the professor sent another classmate over to the lab room to find a bag of gumdrops leftover from building molecules the day before. I was fine within minutes of scarfing down gumdrops with the orange.

Although I occasionally have memory lapses, I haven't had anything like that happen since. I also haven't been putting in 18 hour days and missing meals.

where there's still time, there's still hope...

[Duppers]

16. You're a treasure here.

Thanks for informing us.

[libodem]

17. .

[madfloridian]

18. ......

to you and your friend. You are special to us here.

Thanks esp for your hard work in earning that money for Bernie at Act Blue...keeping us near the top of the list there.

[hamsterjill]

19. Love to you, Steve.

Tomorrow is promised to no one. Thank you for sharing this so courageously so that it may help others.

[AuntPatsy]

20. .

[awoke_in_2003]

21. I reacted similarly when I suffered from seizures

from the age of 17 until 26 or so (oddly, my grandfather suffered from them during about the same time frame in his life). For instance, I was reading the cover notes of a Ritchie Blackmore CD. I saw the words "Ritchie Blackmore uses Fender guitars and Marshall amplification exclusively". It is scary to read something, and know 100% that you should know exactly what it means, but cannot connect it. Whenever I got like that, I knew one was coming on.

[Omaha Steve]

22. Thank you all for the support I get at the DU

I'm headed down to Lincoln for the NU game. I won't be back until tonight.

OS

[DirkGently]

23. Be well, O. Steve.

And your friend as well. You did him a great service looking out for him.

[voteearlyvoteoften]

24. xo

[niyad]

25. your friend there, and all of us here on du, are so lucky to have you with us.

[truedelphi]

26. Can you explain the mechanism by which this disease

Operates?

Is it a wide spread damaging of the nerves? Or really bad circulation to the frontal area of the brain? Or some combination of these two?

Or something else completely?

[Omaha Steve]

36. DISEASE PATHOLOGY

http://www.theaftd.org/understandingftd/disease-pathology

The FTD spectrum of disorders characteristically show progressive and dramatic brain shrinkage, mainly in the frontal and temporal cortical lobes of the brain. The term frontotemporal lobar degeneration (FTLD) is now used in reference to the disease neuropathology, although initially FTD disorders were named using the term FTLD. While diagnostic criteria have been expanded and improved and new research has added considerably to our understanding of the genetics of FTD, a ‘definite’ diagnosis of frontotemporal degeneration is still based on confirming neuropathology obtained postmortem.

Complex pathology

The FTD disorders have a complex pathology; they all have in common the abnormal aggregation of proteins in nerve cells (a proteinopathy); but the type of proteinopathy can vary even within one syndrome. For example, TDP-43 proteinopathy or tauopathy can occur in behavioral variant FTD. And while PSP and CBD are tauopathies, the aggregates are from the 4R form of tau rather than the 3R form found in bvFTD. FTD-ALS is a TDP-43 proteinopathy.

The PPA disorders are just as complex. The semantic variant PPA is a TDP-43 proteinopathy, but the nonfluent agrammatic variant PPA is predominantly a tauopathy but TDP-43 proteinopathy or even an Alzheimer’s like neuropathology can occur. In contrast, the logopenic variant PPA shows an Alzheimer’s disease neuropathology more than a TDP-43 or tauopathy.

[marym625]

27. great big hug

For you and your friend

There's no doubt in my mind, my father had FTD and it went undiagnosed because of So many other issues, including Parkinson's disease

I'm with you in spirit, OS.

[lunatica]

28. you're one of my favorite DUers

You have no reason to know that, but you are. This is just a small thing, but I remember the photo of your father in a sailor uniform. I think of it every time I see your name.

[Dont call me Shirley]

29. Sending you and your friend comfort energy...

[murielm99]

30. I am sorry, Steve.

You contribute so much to DU. I know you do the same for your family and community.

You are one of the people who make DU worth reading.

[arikara]

32. I hope that day never comes for you

Please be sure to look into nutrition based therapies. Correcting deficiencies and imbalances can make a huge difference, and most medical doctors are sorely lacking in that field.

[Worried senior]

34. It's wonderful

that you are so willing to share your story and may be able to help someone else.

We all need support from time to time and someone to lean on.

[MissDeeds]

35. You are among the best of us, OS

You have fought your battle with grace and courage and have been a source of inspiration to all who know you through your DU posts. I am sure you will be a source of strength and courage to your friend as he faces the challenges ahead.

Much love and peace to you both.

[flying_wahini]

37. Have you considered CBD oil?

It can interfere with some drugs so I would ask your doctor, first.
Research is showing it works very well.


http://caregiverrelief.com/cannabinoids-for-the-treatment-of-dementia/

[Arugula Latte]

38. Thanks for your information on this. So many millions of us are and will be dealing with

some form of dementia in the next few decades -- either in ourselves or in family, friends, loved ones. Fingers crossed that there will be some breakthroughs in treatment.