Here's hoping both of you have found your way through the new Forum format. Does it entice you to officially register with us and take advantage of all the new goodies yet?

In any case, both of you are on my mind.

Chris... How did Roger's appointments at Mayo go this week? If I remember correctly, he was meeting with a memory specialist and a behavioralist before you received the neurologist's wrapup. Would you mind sharing what the prognosis was and what treatment plans were offered? And, just as importantly, how are YOU doing? Please let us know...we're here for you.

Judy... The last message I recall from you mentioned your husband's visit with a cardiologist where you were hoping to gain access to additional testing, possibly even a SPECT scan. Did you have any luck with that or are you still going through the "backdoor process?" Would love to hear from you, even if it's simply to let us know how YOU are doing.

In closing, I'm sending a warm wave to Billy G. and thanking you for your welcome return.

Hugs to the rest of my buddies, you know who you are... ...Joan Marie

quote:

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Originally posted by Judy:
...We met with my husband's cardiologist and the doctor asked my husband several questions related to heart problems. ...Then he asked if he had memory problems! My husband answered YES and doctor said for how long? My husband said oh, for about 4 or 5 years!!!
...The doctor doesn't seem to think its a big deal (?)..just something to monitor. So my husband will have a stress test soon and will be taking a different medication for blood pressure that will also 'help' the HOCM.
...NOW, my question. Is it possible that this heart issue is related to my husband's memory difficulties? I did not get to ask that question but certainly will as soon as we finish the stress test and meet for those results.
...I believe we are at a point now, since he has acknowledged this problem, that HE might welcome (?) a referral to a memory specialist.
...I've noticed that something 'new' is what I'd call a delay or a longer than usual 'pause' before recognizing people he doesn't see every day. ...Does that sound familiar to any of you? Can this be caused by the heart issues?
...Wouldn't something have shown up on other tests if blood flow was restricted in such a way as to cause memory deficits??
...Also, my husband is more sentimental, sensitive to feelings of others, etc. Also talks up a storm to everyone. The goodness in him is more evident now than ever. So thats a bit of sunshine.

---

So glad to see you came back to us, Judy...

What a relief, strange as it may seem to be, given what you recently learned through the cardiologist. But the fact is your husband might just be "turning the corner" and beginning to recognize and accept his memory deficits. Hopefully, this new attitude will be most helpful as you move along with his memory and behavior related diagnostics and treatment. To avoid inhibiting this new realization, you might want to consider keeping a "tie" to the original heart-related problems as opposed to focusing on another condition though.

As you already know, the cardiologist should be able to discuss the possibility of related memory impairments to the recently diagnosed condition. However, I would encourage you to continue moving forward while "the iron is hot" and keep blazing the diagnostic trail because your husband might just be facing a concurrent problem and both of them should be treated simultaneously. This is even more critical now that your husband might be using drugs which could also add to impacted memory.

It is doubtful that bloodwork alone can show clear cause for bloodflow restriction or memory loss. That's one of the reasons why the stress tests are being done. There are additional procedures designed to show the location and type of bloodflow restriction. Your husband's cardiologist should be able to answer that question as well.

The "delayed response" or "unusally long pause" you mentioned does indeed sound familiar. Some of it could be for the very reason you described; that being our loved one is seeing someone or something that is out of place as opposed to not truly recognizing the situation for what it is or the people for who they are. It throws them and they either react with a startled response or need time to "process" the information at hand. In any case, this response and/or confusion does warrant notice.

Lastly, it would be my thought your husband's "bit of sunshine" is really his visible expression of his own relief. That's one of the reasons why I consistently push for an early diagnosis of any condition. It not only relieves the person who is effected but their primary caregiver as well. I can't tell you how many times I've heard from those who suffer from any form of memory loss these words: "Well, I'm not crazy afterall. I have something wrong with me and there is treatment for it." I hope you hear these words yourself.

Wishing you, your husband, and your entire family the very best. Please keep in touch. You are thought of often.

Joan Marie

quote:

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Originally posted by CAOlson:
...It's always easier to be on the giving end, but we need to learn that we are allowing someone to give through our receiving. And, hopefully someday we'll be able to return the same or similar good deed to someone else in need.

...When we were at Mayo, the doctor said that it was essential that I get out a minimum of two times per week, so I'm using that as my prescription for well being.

---

Chris... What a beautiful way you chose to express the idea of how to start asking for and accepting well-deserved and much needed assistance. We can all benefit from that perspective.

And, kudos to your most perceptive doctor from Mayo. Taking care of the caregiver is often the most overlooked item. You are a most ready student, Chris, don't ever stop... especially when you think everything is "just fine." Sometimes, that is the very time we need selfcare the most.

Warmest regards...Joan Marie

Happy Sunday Everyone,

It is a beautiful Sunday afternoon here in Minnesota with spring definitely on its way!

Thanks for your responses to my recent questions. It's so good to hear from all of you and to know there are others dealing with the same situations.

Life is going okay for us, and I'm so much more at peace now that we have a diagnosis. Our son was home this weekend and it was so good to "breathe the same air". He is just dreadfully busy with work and school, so any time that he is able to share with us is very precious.

Billy, I can relate to your feelings of reluctance in getting respite care organized; it's a huge step to ask for help. I've come a long way and have been able to make that step. A fellow came in last week for the first time to stay with Roger, and it went really well. This same fellow is coming in again tomorrow so I can get our taxes done. I visited with our pastor last week and she felt there would be people in our church who would like to step forward and offer respite care as well. It's always easier to be on the giving end, but we need to learn that we are allowing someone to give through our receiving. And, hopefully someday we'll be able to return the same or similar good deed to someone else in need. When we were at Mayo, the doctor said that it was essential that I get out a minimum of two times per week, so I'm using that as my prescription for well being.

I should go, but wanted to say "hi" to everyone!

Love, Chris

Good morning All
I don't have too much to report right now. Still lots of questions.. We met with my husband's cardiologist and the doctor asked my husband several questions related to heart problems such as chest pain, difficulty breathing etc. Then he asked if he had memory problems! My husband answered YES and doctor said for how long? My husband said oh, for about 4 or 5 years!!! My jaw probably obviously dropped to the floor. Nothing more was said. The doctor went on with the routine of this consultation. He has mild mitral valve regurgitation and has a condition called Hypertrophic Obstructive Cardiomyopathy..? Not sure if I said that before..The doctor doesn't seem to think its a big deal (?)..just something to monitor. So my husband will have a stress test soon and will be taking a different medication for blood pressure that will also 'help' the HOCM. NOW, my question..is it possible that this heart issue is related to my husband's memory difficulties?
I did not get to ask that question but certainly will as soon as we finish the stress test and meet for those results.
In addition, I believe the new medication will be a beta blocker and think I read that some side effects were MEMORY difficulties..Gosh.
I believe we are at a point now, since he has acknowledged this problem, that HE might welcome (?) a referral to a memory specialist.
I've noticed that something 'new' is what I'd call a delay or a longer than usual 'pause' before recognizing people he doesn't see every day. In fact, he reacted the same way when he saw our daughter and granddaughter in a lobby. He wasn't expecting to see them in that place but that shouldn't have delayed his greeting.
Does that sound familiar to any of you? Can this be caused by the heart issues?
This has been too long-winded. I'm trying get the medical things done and then address these questions with the doctors. Wouldn't something have shown up on other tests if blood flow was restricted in such a way as to cause memory deficits??
I just don't know. I think of you all. Have been interested in the different ways this 'condition' presents itself in our various households and the fact that whatever we NAME it (for me, its OZ) there is a common thread.
Also, my husband is more sentimental, sensitive to feelings of others, etc. Also talks up a storm to everyone. The goodness in him is more evident now than ever. So thats a bit of sunshine.
Thanks to you all
Judy

Wow......didn't realize it had been so long since I posted until I read this thread again. With that said, please allow me to cover multiple subjects here.

Chris...Depending on the site and it's origin, it would be my thought you have the latest approach to FTD vs. Pick's Disease down to a tee: "Pick's is a form of FTD but FTD is not necessarily Pick's." These differentiations in diagnoses are the very reason why we need to ferret out the exact cause(s) of dementia because it effects the choices of responsive treatment plans and it does allow both the effected and their caregiver to prepare for the future.

When speaking of preparing for the future, the topic of possible nursing home placement does arise. This choice is so very personal and depends greatly on the needs of the effected party as well as the abilities of the caregiver in addition to the financial resources available. When Alan first received his diagnosis, I was so sure I could carry the caregiving load to the end. Now, I'm not so sure because I know more about AD progression and its long term impact. I also know more about myself and what my own emotional and physical limitations are. Because of that, I must agree with Edyth Ann's advice to be prepared and have quality long term caregiving placement options in sight. No one likes to place a loved one but, sometimes, the caregiver's health alone can override that decision.

On a lighter note, comments regarding the change in our loved one's personality after onset of neuro-degenerative diseases are always interesting to me. In our case, Alan was always an outgoing fellow but after AD came to live in our home, he became even more so. He is the neighborhood visitor, will chat with any contractor to their distraction, and every cashier at the local market knows us. That's one of the reasons he loses track of time...he's so busy chatting.

As for the reference to FTD being peculiar to Scandinavians, I have heard a similar statement regarding the high percentage of AD found in Germans. I have yet to find reasoning for that connection but the statistics are there. Maybe one day, this information will lead the researchers to discover yet another answer as to the "why" for these devastating neuro-degenerative disease onsets.

~~~~~~ Waving to my buddies, one and all. ~~~~~~

Joan Marie

Not all go to a care facility. Much of that depends on the one you are caring for and how much support you will recieve at home if you attempt home care to the end. The reality is that home care is they most expensive and difficult care to do. It is best to do if you have the support and the ability to care for them at home. The end stage is the most demanding and you can end up extremely sleep deprived. If you do try to care for your LO at home to the end always try to have a care facility in mind that you can uyse if it proves to be more than what you and your LO can do.

Here's another good website with some good books on home care and nursing home care.

http://www.booksunderreview.com/Health/Home_Health/Home_Care/

Here's a website about the decisions about nursing home care: http://cpmcnet.columbia.edu/dept/sergievsky/form.html

Some people get aides to help them at home. I think most go to a nursing home, from people I've known. My hope is that I can care for my husband as long as possible at home. -Mary

Good morning all,

I have a very gray question for all of you. Not that any of us are able to look into a crystal ball, but I want your spin on this question: Can we expect that our loved ones with the diagnosis of frontotemporal dementia, Alzheimer's, etc., will all ultimately have to go to a nursing home? Are some people able to stay at home until the very end? Or is it pretty much a given that nursing home care will be inevitable? I just want your thoughts.

Thanks, Chris

My husband is 1/2 Norwegian and 1/4 Scottish, so he had the stern demeanor. My people have been in America since the 1600s, English/Irish. -Mary

Good laughs all.

Me, I am AMARACAN. My mom is Texan and my dad was New Mexican. So what does that make me? I have a BIG load of it and too hick to know it. My wife has always said she is part swede and part "Pensylvania Dutch" (German). Who knows how that plays in it all.

My mom's origin is English and my dad's is Scotch-Irish. Me I just love to drink both in a cup of English tea.

Billy G

Jim,

Ummmmmm ............. just what is it that you are finished with???????????

Jim,

Thanks for the chuckle!!

Love, Chris

I'm 100 %...

I'm 100% Finnish..doesn't that just scare the living daylights outta everybody now..

...

Happy St. Patrick's Day,

Just thought I'd touch base with my cyber friends today.

It seems that we, Billy and Mary, have a common denominator with our spouses being quite serious-minded people, and they've now become quite laid back compared to their former personalities. Roger is a full-blooded Norwegian, and many people used to say that he even had a license to prove it!!

Speaking of such....I read on a couple of FTD sites that this is a disorder peculiar to Scandinavians. Have any of you read that? We're doomed as I'm half Norwegian and half Swede. Maybe the Swede blood will be my salvation! Any of the rest of you Scandinavian?

At any rate, I hope you're all having a good day and enjoy a little green beer!

Love, Chris

Chris,
Thanks for the details you shared. It was helpful to me. My husband paced a lot before we knew what it was...and became social where he would talk to all the shop owners in every store. I believe he was trying to reassure himself that he could pass for normal. But he too was a serious person and has become laid back and happy go lucky. Some people like him better this way! -Mary

Thanks Mary, Chris and Edyth,

The information you have provided gives me a lot. It does seem that some of the characteristics my wife has do align with Pick's. We have been told that she has FTD but Pick's was not the final diagnosis. It was mentioned as a possibility though not identified for sure. The one thing that she did was go from a very serious type person to one that was really "laid back" and happy. Use to I could never joke around with her without her getting angry. Now she laughs and even tells me I am silly or will joke back as best she can.

I think I will query the doctors at Mayo again and see if it is still a possibility.

Again, thanks for your comments and direction'

Billy G

Pick's is different in that it does not effect short term memory at first. It tends to effect the speach and big mood swings at first. It will eventually effect memory. Someone can also have more than one type of dementia causing disease. Remember dementia is not a disease/condition but symptoms that is caused by a disease/condition. Knowing what is the cause of the dementia symptoms can help with how it is treated and how you would deal with it. Also to further complicate diagnosing is each disease/condition will effect the LO in general similarly but each individual shows the symptoms in different ways and levels. Also a LO may have AD or other disease/conditon and go through the stages differently.

Good morning all,

It was nice to get up this morning and find messages from so many of you. Thanks!

Billy, if I remember correctly, you are doctoring at Mayo in Arizona, aren't you? I can relate totally to your frustration in finding a diagnosis. It's like you just keep wearing out the computer in search for a profile that matches up. Although it doesn't change anything, it has given me a calmness knowing that we finally have a diagnosis, and also knowing that I'm doing the very best for my husband.

In an effort to compare symptoms, Billy, these are the types of things that I have seen in Roger: It began four years ago when he wasn't able to learn how to drive our new vehicle. We had switched from a Chevy pickup to a Ford Explorer, and he couldn't seem to adapt to the gear shift indicator in the new vehicle. Roger was an elementary teacher, and when he talked about things that happened at school, I felt he was using poor judgment on many things, so unlike the "real" Roger.

He also became very social bopping around the neighborhood talking to everyone which was totally out of character, as he was always just terribly introverted and shy. He would also do goofy things like walk around the neighborhood without putting his shoes on -- talk about embarrassing.

While Roger was still working, he became just terribly anxious, to the point that he'd come home and his body was just one big hive from the anxiety he was experiencing each day. After he was placed on disability and was home with me, I recognized how much pacing he was doing and the goofy fidgeting he had developed. That is better now, but he is still very restless and wants to be on the go all of the time.

I haven't allowed Roger to drive for nearly two years now, so he does a ton of walking. He has always been an avid walker, and I'm glad that he's still able to be active. I struggle with allowing him to go off on his own, but we live in a small town and I don't think he's causing any harm. He knows his way around town and never has any problem finding his way home, so I feel okay with his walking at this point.

The only meds Roger is taking is Seroquel and Zoloft. The Seroquel has helped immensely with his impulsivity and OCD. One of Roger's obsessions is coffee; he is always wanting a cup of coffee, but when he's given the coffee, he hardly drinks it, he apparently just needs to hold the cup for security or something.

Well enough....I need to get my day started. I hope this helps you some, Billy, in your search for answers. This is all so frustrating, but it helps so much hearing from all of you, and knowing I'm not in the trenches alone.

Love, Chris