Saturday, May 17, 2014

Hopeful

I want Doctor G (our family physician) to encourage Dan to get the AMYVID PET Scan and, if it's positive, I want Dan in the insulin nasal spray clinical trial.  So when I was in last Monday, Doctor G and I discussed it.

Doctor G's entire attitude about Alzheimer's has changed.  It seems a close neighbor of his, a 59 year-old woman, was diagnosed with Alzheimer’s.  I guess the next time a 59 year old is in for cognitive issues he won’t say, “There is no way you have Alzheimer’s; you’re too young,” as he did with my husband.

“Tell me what’s going on with your husband now.”

I explained Dan lost half his job 6 months ago, after other department managers insisted a change be made.  I discussed Dan’s paranoia associated with that.  I provided anecdotes, such as when a customer called Dan a f***ing idiot.  I warned that in spite of all that, Dan will sit in front of the doctor and honestly say his MCI is not affecting his job, and nobody else notices it - because Dan can’t make the connection that his communication problems are causing his job issues.  He can't even recognize he is having job issues.  "Yes, yes, I understand that."  Wow!  Doctor G has made quite a bit of progress.

“Okay that was last year – what about lately?”

I told him Dan can have normal conversations, but  probably 50% of conversations show his deficits.  I related the fish sticks conversation.  I related another recent conversation where Dan was confused by a very simple math problem.

I pitched the insulin nasal spray trial.  I asked Doctor G to urge Dan to get the AMYVID PET scan so we could know whether Dan has Alzheimer's.  The doctor was very negative saying: your husband has a degenerative brain disease and it's not going to get better - it's going to get worse, these clinical trials come and go, none of them ever work, it's natural to grasp at straws in these situations, etc.  I explained I've been researching this for over 3 years and have never been tempted to grasp at straws.  I told him I held the same opinion until I read the science on the insulin nasal spray and corresponded with one of the scientists involved.  I explained the theory that Alzheimer's is type 4 diabetes.  He responded that he has been doing this for 30 years, not 3, and gave me a look like I was sad and pathetic (not a lovely bedside manner).  He said my husband may not want to know he has Alzheimer's.  Duh!  I know he does not want to know, but if there is a possible remedy - he has to know.  As I was checking out, I reminded Doctor G there are other things to consider - driving, for one.  He sighed and agreed to look into the trial.  I honestly did not expect to hear anything more about it.

I had a bad reaction to a medication so was back to see him 4 days later.  He told me he'd looked into the trial and was very surprised at the positive results.  He said he considers it worthwhile for Dan to pursue it.

Dan, of course, did not go rushing to schedule an appointment when I shared the good news about the doctor's suggestion.  I sent him a tough love email Monday (I know it sounds silly to be emailing him, but when I try to discuss this he just walks away) .  The tough love seems to have worked.

On Tuesday I asked, "Have you called the doctor to schedule an appointment?"

Dan replied, "No, I haven't.....but I'm going to."

"Really, Dan?  Are you really going to just keep saying that forever?" I asked.

"No.  I am going to call," he assured me.

"Then why not today?  Why not right this minute?" I suggested.

He hesitated and then sheepishly replied, "Because it's the 13th.  I don't want to schedule the appointment on the 13th."

Sigh.  Foiled by his "Tuesday the 13th" superstition.

When Dan called Wednesday, he got a recording saying the office was closed Wednesday through Sunday.  He thought that was really funny.  I can't catch a break. Oh well, maybe that will give me time to line up a free PET scan.

So I'm hopeful that we can get a diagnosis and I am praying that, if it's Alzheimer's, the  trial is still recruiting.

Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD. ~Psalms 27:14

 

Sunday, April 13, 2014

Beyond Frustration


There is a new clinical trial for insulin nasal spray in the treatment of Mild Cognitive Impairment and Alzheimer’s disease.  I was very excited back in 2011 when they presented the first trial results.  (Click here for my earlier blog including a video summarizing the 2011 trial).
I want Dan to get an AMYVID pet scan and find out once and for all if he has Alzheimer’s pathology.
“Dan, please get the scan.  If it’s positive I would want you in this trial yesterday.  If it’s negative you can stop worrying about Alzheimer’s,” I plead.
“I don’t worry about it except when you are constantly bringing it up!" he grinds out.
“Dan, I speak to you about this topic ONCE a year.  ONCE.”  Dan feels that I am constantly bringing this up because he is constantly demonstrating his impairments and when it is obvious even to him (see last blog entry), in his mind, it is me pointing out his impairments.
There is zero downside to him getting the PET scan.  If it's positive - we get him in this trial.  If it is negative - we can stop worrying that he will progress to AD.
The researchers hope the drug will be available in 3-4 years from the start of the new trial, so it will be 2017-18 before this drug would be on the market.
Even if Dan was on the placebo the first 12 months of the trial, he'd get the insulin the last 6 months (that's the way it's set up).  Then all trial participants get to stay on it - they do not have to wait through the FDA approval process.  So that means Dan could arrest his disease within months vs. another 3-4 years of irreversible brain damage (if he has AD).
“I’ve told you: if I have it, I don’t want to know!” Dan insists.
This is the worst imaginable irony.  Dan’s impairments are going to keep him from getting help with his impairments.  His reasoning button is broken.
I have recruited our sons to lobby him.  I am praying.  This is so frustrating!

Friday, February 7, 2014

Fish and chips

Dan and I were going out to grab a bite to eat.  As we left the house, I asked, “Where do you want to eat?”

“I don’t know,” he replied.

Several blocks later, he enthusiastically announced, “Fish and chips!”

I wondered what he was referring to.  It couldn’t be dinner – we both hate fish.

“What?” I asked.

“Fish and chips!” he repeated.

“What do you mean, fish and chips?” I asked.

“Fish and chips for dinner!”

That’s weird.  We have never eaten fish and chips – the whole hating fish thing always got in the way.  But maybe he has suddenly developed a hankering for fish….

“Okaaaay….where do I go for fish and chips?” I asked.

“That place in the mall.”  He paused.  “Oh, I can’t remember the name of it!” he said with frustration.  “But you know it!”

“Fish and chips…in the mall…” I racked my brain.  “Describe the place.  Tell me something about it.”

“You know!  They sell fish sticks!”  Now he’s getting upset.

I begin a tour of the mall in my head.  I cannot think of a single restaurant that sells fish sticks.  I realize Dan must be substituting one thought – fish and chips – for something similar.  So I try the closest thing I can think of.  “Chick-fil-a?” I ask.

“That’s it!” Dan exclaims.  He pauses for a moment and says, “I guess it’s chicken, not fish.”

Dan can carry on a normal conversation, or Dan can carry on a conversation like this.  This is one reason things are falling apart for him at work.  His clients must notice this.  They are losing jobs left and right.  His boss is clearly frustrated with Dan.  He has hung up on Dan several times, once when Dan all but called him stupid.  That's another probelm - the social filter isn't there.  I feel so badly for his boss. In the 30 years Dan has worked there, the boss has only fired one person that I can remember; he is the most loyal employer I know.  In this case, it may be his downfall.

Dan's communication problems are just one factor in his crumbling career.  Another is his inability to juggle more than one or two issues at a time.  A few weeks ago, a co-worker called him with a problem and he simply responded, “I can’t deal with that.  I have too many other problems I am trying to work on right now.”  Yikes!   A week or so later, on a Monday, he told me that another co-worker had apparently tried to tell him about a problem on the previous Friday.  He had responded, “Okay.”  She knew he could not have been paying attention so she described the problem again.  He again replied, “Okay.”  So she decided she would just have to wait until Monday and try again, hoping Dan got some rest over the weekend, and he’d be able to address the problem on Monday.  When Monday rolled around, she told him how he had reacted on Friday.  I am sure she was concerned for Dan.  Unfortunately, Dan did not share her concern - he was laughing about it. Yikes!

His boss is seriously concerned about the lack of new accounts.  New accounts are the life blood of their business.  The company occasionally loses accounts; it’s the nature of their business.  In order for the company to survive, the sales staff has to constantly be bringing in new accounts – something Dan always excelled at – salesmanship. Not so much anymore.  Dan’s boss related news that one of their competitors was having the same problem – no new accounts.  That owner decided to fire all the sales staff and to service clients with his customer service staff. He’d decided he didn’t need a sales staff (or the expense of one) to do that.  Hint, hint.  Dan's boss also recently asked, ‘Didn’t you say a while back, you were thinking about retiring?”  Hint, hint.  Last week, another department head said, “Well, you are going to retire soon, aren’t you?  Your heart obviously isn’t in this anymore.”  Hint, hint.

I keep urging him to retire.  That is all I can do.  I feel so badly for everyone who works there, that their livelihoods are tied to Dan’s performance.  And, of course, I feel most badly for Dan.  He seems to suffer from anosognosia – an unawareness of his own difficulties.  Finally, I feel badly that I am unable to be a proper helpmate to my husband.  This disease will not allow it.

I must truly trust in the Lord.

For thou art my lamp, O LORD: and the LORD will lighten my darkness.
For by thee I have run through a troop: by my God have I leaped over a wall.
As for God, his way is perfect; the word of the LORD is tried:
he is a buckler to all them that trust in him.
For who is God, save the LORD? and who is a rock, save our God?
God is my strength and power: and he maketh my way perfect.
~ 2 Samuel 22:29-33

Monday, October 7, 2013

It’s just so hard to watch.

Dan has lost half his job.  At the beginning of the year Dan’s boss asked him to hire someone to manage his customer service staff.  Dan didn’t want to offend his staff by bringing in someone new and didn’t want to promote anyone because they were all too busy, so he did nothing for a long time.  His boss increased the pressure and increased the pressure.  Then several of his customer service staff resigned, forcing him into a position where he had to hire someone.  The new employee starts today, as manager of customer service.  Dan thought she would be reporting to him.

On Friday Dan discovered through the grapevine, that the new manager will report directly to Dan's boss, not to Dan.  Dan is very upset, especially that he found out the way he did.  Of course, it's entirely possible that his boss informed him of this somewhere along the way and Dan wasn’t paying attention. 

I’m thrilled that Dan will have less responsibility and therefore less stress.  I’m thrilled that this is one step closer to retirement.  At the same time, I am sad.  Sad for what he has lost and sad to see the effect it is having on him.  Last night he said, “I guess he’ll fire me from sales next.”  He was trying very hard to sound flippant, but his pain and fear was evident.

I would have been happy for Dan to retire two years ago, with his dignity intact.  But I don’t get to make those choices.  This damn disease does.  It’s just so hard to watch.

God is our refuge and strength, a very present help in trouble. ~ Psalms 46:1

Wednesday, September 25, 2013

Meds DO NOT help with MCI

"Four widely prescribed Alzheimer's drugs failed to improve cognition or function in patients with mild cognitive impairment and were even associated with harms -- including diarrhea, nausea and vomiting, according to a meta-analysis.

The systematic review included eight randomized trials that compared donepezil (Aricept), galantamine (Razadyne), rivastigmine (Exelon), or memantine (Namenda) with placebo."

Click here for the complete article.

And yet, doctors will continue to prescribe them, and desperate patients will continue to rush to the pharmacy.

Dan’s turmeric drink therapy does seem to be having an effect.  It is impossible for me to know whether it is a placebo effect or a real biological effect.   We did have him take a cognitive test before starting the drink and he will retake that soon.  That may give us an objective measure.  Here are some observable changes that have occurred after three months:

He is MUCH more engaged.  At home there have been several times when I thought, “Wow!  A little bit of the old Dan is back.”  I described in an earlier blog that he was bothered by peripheral noise when he was watching television.  A few days ago, he leaned against the counter and asked me to expand on something I had said.  It may sound minor to a reader, but anyone who deals with this disease on a daily basis knows that its victims become withdrawn and self-centered (not consciously, mind you – it’s the disease).  So to see Dan less withdrawn and less self-centered is a big step in the right direction.  I can’t say for sure that it has helped him at work, but I think maybe it has.  Things had gotten so bad there I was certain the end was very near.  Now he does seem to have a bit of a spark back when he discusses work.  He also seems to have regained some of his once stellar problem solving skills.

Interestingly, I have noticed a return of Dan’s “pill rolling” tic.  There was a period of a year or so where he would unconsciously rub his thumb in a circular motion – sometimes against his other finger, but usually against whatever surface it was resting on.  He would often do this and it could go on for very long stretches.  At some point it stopped.  But now it is back.

I am very encouraged.

See my original blog post for the drink recipe – it also contains cinnamon, ginger, and honey. We have finalized the recipe to include all of the spices - at their full dose - but only one half a cup of almond milk. It’s just easier for Dan to chug down the smaller quantity.

Tuesday, August 20, 2013

Just one more unknown

Be careful what you wish for.  I was hoping the turmeric drink would improve Dan’s cognitive abilities.  The good news – it’s improving Dan’s level of engagement.  The bad news – his social filter did not make the same rebound.  I now fear a return of the dark years.

We experienced a period of a year or two before Dan’s MCI diagnosis and about a year after which were very unsettling.  One of Dan’s worst symptoms was an inability to cope.  The slightest problem would cause him extreme frustration and he would often fly into rages.  I mentally refer to that period as “the dark years.”  Happily, a few years ago, that subsided for the most part as Dan became more withdrawn, less social, and I think just entirely occupied with trying to keep up with everyday life – recording everything in his iPhone, trying to make sense of conversations swirling around him, coping with deteriorating conditions at work, etc.

It was the latter which really gave me the nudge to give the turmeric a try.  Watching things fall to pieces with Dan’s work was very difficult.  It hurt to see my husband, one of the top performers in his field, losing so much.  I worried about his company as well, the effect his reduced sales would have on all the other employees.

So now, after a few months on the turmeric drink, Dan is much more engaged.  Unfortunately, this new engaging Dan dominates conversations, turns the conversation to himself every time someone else says anything (not even trying for a natural segue), says things that shouldn’t be said – ever, and is easily  and often irritated.

Yesterday he lost it - just went totally bonkers.  He had an important work appointment coming up.  A week ago, I mentioned he should get in to have his hair dyed and cut (it looked terrible).  He called, but when he couldn’t get in that day, he could not figure out that he should set an appointment for the next available day (even when I told him to do that).  This repeated for several days.  Yesterday, I suggested he REALLY needed to get his hair taken care of before his meeting.  So he went to my salon.  He called me on his way home, in a rage!  You would have thought his entire face had been chemically destroyed and he’d suffered irreparable damage, and that his hair was rainbow colored.  I was in a neighbor’s yard when he drove down our small, side street at well over 40 m.p.h.  My neighbor gasped, “Oh my God!  He’s going to drive into the garage door!” as he whipped into our driveway barely slowing.  He stormed to the mailbox and into the house.  A short time later he came up the street and began ranting -pointing at a spot near his hairline that looked perfectly normal and demanding, “Do you see that?!” - complaining about his head burning.  My neighbor calmly replied, “I don’t see anything.  When you get your hair dyed, every now and then it can sting a little – that happens.  Your hair looks great!  She did a really nice job!”  That took the wind out of Dan’s sails and he just looked dumbfounded.  I suggested if the dye stung him he ought to go home and take a shower.

Ugh!  It was shades of the dark years – all over again.  I don’t want that again.  I am so glad my youngest goes off to college in a few days.  Wish I could go, too – LOL!

So, what am I to make of all this?  Is the turmeric really helping with plaques and tangles?  It certainly seems to be doing something; although, I guess it could all be a placebo effect.  If it clears some plaques and tangles and not others, are we really better off?  If I had to endure another 2 to 3 year period of rages on the way to Dan fully recovering, I would do it in a heartbeat.  But if we are just going back to the dark years without a full recovery – if we get stuck in the dark years – no thanks!

We’ll keep at it with the turmeric for now.  Part of this experiment includes giving Dan a cognitive test before and after.  I was going to give it after 6 months, but if the inappropriate behavior continues, maybe we’ll retest after 3 months.

Tuesday, July 30, 2013

The Turmeric May Be Helping

I think the turmeric is improving Dan’s cognitive abilities.

It took a while to get the routine in place, but Dan has been taking turmeric faithfully on a daily basis for about one month.  I was encouraged last week when several times over lunch we had discussions about his work issues and, for the first time in ages, Dan was coherent, able to focus on the relevant issues, and was engaged in effective problem solving.  It was stunning really.

I asked my son yesterday if he noticed any improvement in his father since he began the turmeric.  He said, “As a matter of fact there were a couple times last week where I was surprised at how engaged he was.  And he was actually recalling details of events that I wouldn’t even have remembered.”

Last night the three of us were in the family room watching TV.  Towards the end of the program, my son started a conversation with me.  A moment later Dan turned to us and said, “Could you be quiet?  I thought we were watching this.”  It was remarkable!   For several years the typical scene in the family room is Mark and I sitting on the loveseat, while Dan lies fully reclined on the couch.  It is not a large room so – if Dan reaches out and I reach out we can pass something from the couch to the loveseat without getting up.  In spite of the proximity, Dan is always oblivious to any conversation Mark and I may be having on the loveseat, even when we raise our voices quite loudly to try and engage him.  It’s kind of the opposite of Attention Deficit Disorder.  Dan becomes singularly focused on the TV (or iPhone) and it’s nearly impossible to get his attention.  So it was extraordinary for our peripheral conversation to have intruded on his TV viewing.

Dan’s cognitive impairments have been progressing slowly but steadily for three years.  He has good days and bad days, good stretches and bad stretches.  We (my son and I) are never fooled by the good days/stretches – perhaps early on we were – but we know now that those are days to be appreciated but not to be encouraged by.

This is different.  This is encouraging.

There's no doubt Dan is still having issues, but if the turmeric gives him a boost and slows his progression, it is to me a miracle.

Thanks be to God for this improvement, for however long it lasts!

See my original blog post for the drink recipe – it also contains cinnamon, ginger, and honey.  We have finalized the recipe to include all of the spices, but only one half a cup of almond milk.  It’s just easier for Dan to chug down the smaller quantity.

I might even start taking it myself J

I love the LORD, because he hath heard my voice and my supplications.
Because he hath inclined his ear unto me, therefore will I call upon him as long as I live.

~ Psalms 116:1-2