Saturday, June 14, 2014

Another Diagnosis. Really?

On Monday, June 1 Marcia and I went to NYC to meet with Dr. Honig, her neurologist.  We usually go every 3-4 months, but it’s been about 5 since our last visit as our April appointment had to be moved.  For the last several appointments, we’ve had discussions about Marcia’s medications.  Are they still the right medications, is the dosage correct, etc….What I’m finding out with AD is much of what Marcia takes is really trial and error choices.  In November, we started on a drug called Keppra, which is meant to control the seizures that hospitalized her last October.  Apparently it works great as I forgot to give Marcia her ½ pill evening dose the night before her appointment.  Monday morning she had several of the myoclonic tics that plagued her over the last two years.  These “tics” are not serious, but on this morning, it made it very difficult for her to take her medication and I had not seen them with this frequency or severity since the morning of her seizures.  Thankfully, about 20 minutes after she took her pills, the “tics” stopped.  Dr. Honig said it’s pretty clear the medication works.


Dr. Honig then did the normal physical examination, including asking her several questions.  He and I both think she generally knows what she wants to say and knows the answer to his questions.  She just cannot articulate them.  Marcia can’t really say anything more than a one word answer and that word is more often than not, unrecognizable.  This was not a surprise to me as I’ve seen the steady degradation in her communication skills.  However, he noticed two things that were different, or had changed since our last visit.  First, he noticed an asymmetry to her walk.  Marcia’s left arm and right arm did not move with the same rhythm or motion and her walk was not as fluid as it had been.  He also noticed more stiffness in her muscles.  After looking at the lab reports from her spinal tap in 2010 in conjunction with these physical changes, Dr. Honig said he believes she has Lewy Body Dementia (LBD) in addition to Alzheimer’s (and Primary Progressive Aphasia).


I’ve read up on LBD over the last week or so, and frankly I’m not sure what to think.  Everything about these neurological diseases are mostly hypotheses. We will never know for sure what Marcia has until her brain can be examined under a microscope.  Not everyone has all the symptoms used to describe these diseases and they can show up differently in each person.  I sort of feel it’s up to me to draw my own conclusions.  I joined an Early Onset Facebook support group a few weeks ago (1500 members), and it’s pretty clear, based on what others post and comment on, that I’m not the only one who feels like we are making our own diagnoses or would like to know more definitively what our spouses, parents, siblings are suffering from.  


LBD is hard to diagnose in the early stages as it looks a lot like Alzheimer’s in that there progressive cognitive declines. But LBD also has Parkinson’s-like symptoms related to motor skilss, like slowness of movement, difficulty walking and lists “runny nose” as a common feature.  Marcia does have these physical challenges that aren’t easy to describe by AD alone, and we go through a LOT of tissues.  But hallucinations, violent behavior and depression are often used to describe LBD, and Marcia doesn’t have these symptoms.  Like AD, LBD is caused by a build-up of proteins in the brain, just a different protein leading to a different spectrum of disorder.  Dr. Honig says people with AD can have LBD, and people with Parkinson’s are known to have LBD too. 


So what does this mean?  Like AD and PPA, there is no cure for Lewy Body dementia and it’s progressive.  There are medications to help control LBD, but they have some potentially significant side effects.  My guess is that it just means that language, cognition and now motor skills will all continue to decline, and there’s nothing we can do to stop it. 


Sunday, March 23, 2014

Branchburg Race Against Alzheimer's - May 18

Last week Marcia and I went to a fundraiser for Autism in the town where we live, Branchburg, NJ.  This was the first time in several months Marcia and I have been out socially outside of our kids sporting events.  Marcia had a really nice time, and it was so nice to see her smile and enjoy herself.  We didn’t stay very late, and Marcia was asleep minutes after we got home. 

Longtime friends of ours, whose son Jack was diagnosed with autism 8 years ago, have been more than just good friends to us.  Frankly, they have been mentors and an inspiration in how they’ve handled diversity and made fundraising to support autism their mission.  We’ve seen Jack grow and make incredible strides in every way imaginable.  Before dinner, Jack took the microphone and spoke to the group with such confidence.  He did a fantastic job.  You could see the joy in the faces of everyone who saw him speak.  Jack’s mother, Shannon, highlighted in her comments how far Jack has come, how amazing his progress has been, and how proud they were of him. 

As Shannon spoke, the differences between autism and Alzheimer’s hit me pretty hard.  The numbers associated with both are staggering, and as Shannon said, “it takes a village” to raise a child with autism.  Shannon told me three years ago after Marcia was diagnosed with AD, that while she knows it’s not our nature to ask for help, she told me “you have to get over that”.  She couldn’t have been more “right”.  It’s taken a village to help with Marcia too.  Both Shannon and her husband Bryan were very gracious in their comments last night regarding the support they have received from family and the local community, and the importance of that support to Jack’s growth and development.  Jack’s family has worked so hard, raised a LOT of money for at least two special needs schools, and have seen Jack respond.  I’ve seen Marcia go the other direction.  And I can’t do anything about it.

 While there is little that can be done to help Marcia, I hope we can prevent others from going through this in generations to come.  Last June was the first Branchburg Race Against Alzheimer’s 5K Race and 1 Mile Fun Run/Walk.  Branchburg and surrounding communities were so supportive of the race, and Marcia was the reason why.  In addition to local support, we saw over six hundred people participate.  Donations came in from twenty-two states and three countries, raising over $58,000 for Alzheimer’s Disease research!

 The second Branchburg Race Against Alzheimer’s 5K Race and 1 Mile Fun Run/Walk, will take place on Sunday, May 18, 2014.  Just like last year, the event will take place at White Oak Park in Branchburg and will include a 5K Race (3.1 miles) and a 1 Mile Fun Run/Walk to support Cure Alzheimer’s Fund, an organization that uses 100% of the donations that it receives to fund Alzheimer’s Disease Research.  Recently, Cure Alzheimer’s Fund was recognized for being on Charity Navigator’s Top 10 List of Highly Rated Charities Relying on Private Contributions.

Branchburg Race Against Alzheimer’s details:

Date: Sunday, May 18, 2014
Time: 9:00 am
Location: White Oak Park
Branchburg, New Jersey

Please visit the event website,  Please “like” and visit the event Facebook page: Branchburg Race Against Alzheimer’s. Thanks for supporting this great cause! 

The changes I’ve seen in Marcia over that last year have been dramatic and heart breaking.  Worrying about my kids keeps me up at night, and this disease has affected my work where my future is certainly not what I had hoped it would be at this stage of my career.  But this fundraising event was a real highlight of the year last June and I’m hoping for another great turnout.  Our hope is to raise more money for Alzheimer’s research, and raise awareness for this disease that is a crisis in the United States.  We would love to see a great turnout for race day.  If you cannot come in person, please consider a donation to help find a cause!

Sunday, March 9, 2014

This was a really good week or so! And it wasn’t….

Almost every day I wake up in a good mood.  And nearly every day, at some point, I talk myself off the ledge, figuratively speaking.  For someone who is perceived as an even keeled person who doesn’t wear his emotions on his sleeve, this may come as a surprise to many.  But the last week or so really did exemplify the range of emotions and the highs and lows that have become more commonplace.

Years ago, when my focus was on shared parenting, work and reasonable other interests, I had confidence that I was doing these things reasonably well.  Over the last three years, I’ve added all the things Marcia used to do with excellence, as well as caregiving to my routine and I’ve not managed the added responsibilities, nor my old ones, as well as I feel I should.  And if I spent more time dwelling on this, I’m sure I’d spend more time “down” or depressed.  One slip up in any of these areas might have ruined my day prior to Marcia’s illness.  Today, it might not even be the hardest thing I have to deal with on a given day.  One day last week I got some news that was hard to hear.  But on this particular morning I got a later start because Marcia had a harder time than normal getting dressed and needed my help.  While my “news” could have made me feel sorry for myself, I just didn’t.  I’ve seen others feel victimized in similar situations.  Why doesn’t the sting of any particular situation last?  I think of the challenges Marcia faces every day. And on this day she couldn’t tie her own shoes.


This last two weeks were transition weeks in the sports world for our kids.  Despite the snow on the ground and the cold temperatures, our winter sports have ended and the spring schedule is about to start.  Riley, a senior in high school, had her last two fencing meets.  I had never seen fencing in person before Riley got involved and I’ve really loved watching her do something she was really passionate about.  If you’ve ever played a sport in high school or college, you know the emotions that surround your “last game”.  I think I felt it more than Riley did.  Ryan also finished his basketball season, losing in the finals of his in-town league.  Watching Ryan play this winter was a real joy as he played sort of a hybrid point guard/shooting guard (and he wasn’t shy about shooting!).  My lasting memory of his final game was him hitting a 3 pointer at the buzzer (if it had been an 8 pointer, they would have won the game).  After the game, he said that might have been his last organized basketball game.  Both of these “lasts” are a sign that both are growing up.  Too fast.  But they are supposed to start lacrosse this week, and Ryan’s spring soccer season is supposed to start this week too.  If only the snow would melt and temperatures would stay above freezing, we can get outside again.


There was more to these last few weeks.  One of the things I wrote about in my last blog was about “red tape” associated with insurance and disability claims.  Almost five months after first making a claim for Long Term Disability insurance, our claim was finally approved this week.  If anyone saw Seth Rogen testify before congress this week, he captured the financial issues of Alzheimer’s well (if only most senators had stayed to hear his perspective).  Marcia’s Day Center expenses will now be covered, as will the companion that we hope to get started soon. We had also applied for Social Security Disability benefits in January.  Early Onset AD typically gets a fast track for approval, and I have to give the SSA credit, or at least the person assigned to our claim.  They (and she) were fantastic to work with, proactive and assertive to move our application forward.  Both the SSA and I were not able to get our doctor to fill out the medical information so we had to have an independent examination last weekend.  I don’t remember the doctor’s name we met with, but it took about 5 minutes for her to get what she needed (and I assume she will recommend our claim be approved).  Marcia could answer almost none of her questions.  She didn’t know the day of the month or even the year, and she couldn’t spell her name.  Marcia was asked how many presidents of the US she could remember.  She could remember two:  “Barack and Carter”.  There were many more questions on the forms the doctor was supposed to ask, but after Marcia couldn’t spell her name, she apologized for making Marcia cry and said she had what she needed.


I’ll end this entry with a few really awesome events.  One of Ryan’s teachers (Amy F.) emailed me a week or so ago about getting kids from his middle school to support the May “Branchburg Race Against Alzheimer’s”, the second race in Marcia’s honor (I’ll blog separately about that).  Amy had asked Ryan if that would be okay with him, and after a day or so, he said yes.  She put a committee together to plan t-shirt designs and rally the school to support the race.  Ryan spoke to the committee about Alzheimer’s, which is very out of character for him to speak to a group about anything, and it was hard for him.  But I was told the kids were very supportive to him and are very excited to help publicize our upcoming race.  Last week, Ryan’s teacher invited me to the 8th grade assembly later this month, where Ryan will talk to the whole class about the race and Alzheimer’s disease.  I can’t tell you how proud I am of Ryan.  I know this is not easy for him.  And I’m very grateful to Amy for the impact she’s having in Ryan’s life and how she’s really bringing out the best in him.  (Plug for teachers here!  Riley has also had several teachers help her through this, as well as the college application process!)


And as the week ended, Judy Napoli, who is organizing the Branchburg Race Against Alzheimer’s, told me that CMG, last year’s primary sponsor had committed to be the primary sponsor again this year.  We also found out the CMG and family members of CMG are running two satellite races in Houston and Orlando!!!!  CMG is a company I’ve known well for many years and just love everyone I’ve met there.  Their president, Stew Bishop has been a boss, I’ve been a client, but more than that, he’s been a friend and has supported us in our fight from the first day in so many ways.


And finally, Riley was accepted into the physics program at Drexel University this week, with a fantastic merit based scholarship.  I took her to Drexel today for “accepted students day” and both of us came away thinking we may have found the right place for her.  She has applied to 9 schools and heard back from two, accepted by both.  Riley’s entire high school career has been in the shadow of Marcia’s diagnosis and progression.  What she’s done, all that she’s accomplished…..  Wow!  Over the next four weeks we should hear from the other 7 schools, but Riley is very excited about what she’s seeing and reading about Drexel.  And this one is relatively close to home…..

Thursday, February 6, 2014

Day Center (acceptance), Seizures (under control) and "red tape"

I received a Christmas card in the mail recently (Feb 1st), which inspired me to finish this post I started in December.  Since Marcia’s seizures in October, my “to do” list has lengthened, and at teams seems unmanageable, and blogging can always wait another day. 
I’ve previously written about our “plan” to start Marcia at the Day Center a few days a week and increase the number of days gradually.  In time, the plan was to supplement Day Center days with in-home health care.  With the seizures in October, our timetable has moved forward faster than I had planned.  We have been adjusting Marcia’s medication since her release from the hospital in October.  While the seizures seem to be under control, her cognitive functioning has not really returned to pre-seizure levels.  Speech, which has deteriorated over time, is predictably poor.  But she has more trouble getting dressed and needs assistance on a daily basis, mostly with her shoes.  While incompetent still, I’m getting better at helping her put on eye liner and “doing her hair”.  I’ve recently learned these are “left brain” activities.  Memory is still less of an issue.

Since the last posting, Marcia has become more comfortable with the Day Center.  This has been a huge blessing.  I’m sure there are several factors that have come into play, but I give the Day Center credit for working really hard to find the connection appropriate for Marcia.  We also adjusted her pick up time slightly, bringing her home a little earlier.  Time and familiarity with the routine, staff and other “guests” has made her feel more comfortable.  No longer is getting her ready to go a challenge.  Through the Lotsa Helping Hands website, we have frequent visitors to ensure Marcia isn’t home alone very often.

Holidays and paperwork have also been a big headline of the last 8 weeks or so.  Claims for long term care insurance, which started in October, continue.  Our insurance company is thorough, which is a little frustrating.  It seems like every week there’s a new request for more information.  I started this process more than 3 months ago.  Social Security disability paperwork has been filed and I hope for a quick resolution so we can make sure Marcia has the care she needs. I have also found an agency and a “companion” for Marcia that we hope to start soon, after Social Security and insurance is able to help out.

This year the holidays brought more fatigue than happiness.  While I enjoyed time off work, I found the materialistic part of the holidays a chore.  It’s been 3 years now since Marcia’s diagnosis and Marcia doesn’t drive, shop or do Christmas Cards.  I took on those tasks this year and was just happy to get them over with. 

This holiday saw more sadness than normal.  Throughout Marcia’s illness, I’ve been amazed how strong she’s been, and she’s not shown self-pity or depression.  But one day I found her crying and I don’t really know why.  She wanted to tell me, but all she could say was “kids”.  I’m sure she’s aware that she can’t be the mom she was, or wants to be. Going back three years ago when we got her Alzheimer’s diagnosis, her first reaction was around our kids, and knowing this diagnosis was going to change everything.  I can only assume not being the supermom she was is heartbreaking for her.

I also saw tears and sadness from my daughter while in Maine, where Marcia’s parents live.  Marcia hasn’t seen her parents since July and the kids haven’t seen them for about a year and a half, so this was a long overdue visit.  Whereas Marcia’s parents once lived in a two story home on a gorgeous like, they downsized into a two bedroom condo up the coast of Maine in Rockland and this was our first visit since their move.  While the move was very appropriate for them, their new place made for tight quarters.  At home, the kids’ have their rooms, the basement, friends and activities to keep them busy (and distracted).  In Maine, I think they got to see more of Marcia’s illness than they normally see.  Our last night in Maine, my daughter was in one of the bedrooms curled up in a ball on the floor crying saying she can’t take this anymore.  I think the constant exposure to Marcia was a bit much for her.

I’ll end this post on a positive note.  Riley has finished her college applications, and I have completed her financial aid forms (more @#$% paperwork…..).  Riley has heard from one college so far, with an acceptance to Penn State.  Only 8 more to go!

Saturday, November 30, 2013

Day Care, Seizures and what do we do now?

A few months ago I gave some advice to anyone experiencing Alzheimer’s as a caregiver.  That being “prepare for the next steps in the disease…..”  As I write today, I can tell you I might have been preparing for the next step, but that wasn’t good enough.  I should have been looking two or more steps ahead.  At the beginning of October, Marcia went to the Adult Day Care of Somerset County for the first time.  “The Plan” was to have her go two days a week to get used to going, and keep her Wednesday through Friday schedule pretty much the same as it had been.  Over time, we could gradually increase the number of days at the Day Center, and slowly add in home health care.  I felt this was a logical and thoughtful plan.  Until…..


On October 22, Marcia had a huge seizure, just a few minutes after my alarm went off.  A week earlier, she ran out of Klonopin, the drug she’s been taking to help manage the myoclonus tics she has been having for quite some time.  As I learned the hard way, refilling a prescription for a controlled substance was not as easy as refilling any other drug.  The net of it is that Marcia was off Klonopin for about a week while waiting to get the Rx refilled and her myoclonus tics got more frequent and more severe, causing her to fall, spill food and/or drink and startle people around her who had not been familiar with this part of her experience with Alzheimer’s.


Even before my alarm went off that morning, I could feel and see almost continual tics (sort of like mini seizures).  As I got out of bed, I turned on the light in our bathroom and could see Marcia’s eyes were open.  She got out of bed to go to the bathroom and I walked with her because these tics were non-stop, one right after another.  Once in the bathroom she had a full seizure.  I was holding her when the seizure occurred and set her down on the bathroom floor and she lost consciousness.  Call to 911 and a trip to the ER followed.  While in the ER, she had another bigger and longer seizure.  So thankful to have been in the ER for this one.  Three nights in the hospital, CT scans, an MRI and significant doses of drugs to address the seizures and see if there was a specific cause (stroke, hemorrhage, etc…).  While there were no signs of anything that would cause a seizure, all of these pictures of the brain did show what one might see in an Alzheimer’s patient (atrophy, more area of fluid than a normal brain, etc..).  We could only assume that Marcia might just be susceptible to seizures and the medication she was on was effective in preventing them as long as she was taking it.  If I hadn’t run out….


It’s been more than a month since Marcia was released from the hospital.  It took about 10 days before she was cleared to return to the Day Center.  The hospital wouldn’t clear her because her balance was not very good.  Heavy doses of medication and very little activity were the cause of this.  Her balance did return to normal pretty quickly after leaving the hospital.  But that’s about all that has returned.  The doctors felt it would take as much as a week for the hospital medication to clear her system, but there was no guarantee she would return to her pre-seizure self. Her speech is little more than one word at a time, she looks fatigued almost all the time, she sleeps more and just has a harder time doing things she used to do prior to the seizures. 


Last week, Marcia and I went to NYC to see her neurologist for the first time since her hospitalization.  The medication administered in the hospital should have cleared her system, and should not be the reason she has not yet fully recovered.  Dr. Honig adjusted her medication by reducing the seizure drug by half.  We’ll see if her cognitive abilities improve and if the myoclonus tics come back (there have been none since the seizure).  We are hoping more energy, better speaking ability and more independence, but may have to balance a higher risk for seizure with improved cognitivity.  Dr. Honig also thinks Marcia should not be alone, and this is the part where “the plan” needs to be tweaked.  He’s not that concerned about seizures returning at this point, but more concerned if we were to have a fire or other home emergency where she would need to make a phone call or make quick decisions.


The problem is that Marcia doesn’t like going to the Day Center.  She seems to do fine while she’s there, but she resists going every morning she’s scheduled to go.  Having my parents and sister-in-law with us has helped keep her under some trusted supervision, but we are back on our own now.  I’ve worked at home a few times, and the Thanksgiving holiday has come at a good time.  I’ll be using vacation time and possibly take FMLA leave (family leave) until we can get her set up with some home health support to supplement days in the day center.  I may put requests on the Helping Hands website for people to come and spend small chunks of time with Marcia.  For the foreseeable future, I expect we might have Marcia properly supervised, but not very happy.  And I’m not doing a very good job pushing the right things if I’m continually making decisions that make her upset.  She hasn’t been happy when spending time in the house, and she doesn’t like going to the day center.  And there really aren’t many other options.  I’m praying she’ll adjust to both in time and make the most of her situation.

Sunday, October 6, 2013

Mourning the Living

The college search my daughter Riley is going through is stressful, but one great part of the search is the 10-12 hours I spent in the car with Riley a few weeks ago when  we drove from New Jersey to Boston, stayed the night just outside the city, toured Boston College and Brandeis University and drove back to New Jersey.  We listened to 10 hours of her music (and I recognized three songs), talked about school, college, friends and many other things.  Among the many things we talked about was Marcia.  A year ago, any kind of discussion about Marcia with Riley was unthinkable.  She would get very emotional any time I would bring up anything about Marcia’s illness.  It took me almost a year to be able to talk about Marcia with anyone without struggling with my own emotions.  Since we didn’t share a lot with the kids until we had a diagnosis, I started the “mourning process” about a year or so before Riley did.  I really understood why she had such a hard time talking to anyone about our situation, because it was hard for me too.  With Alzheimer’s, it seems the diagnosis is where the mourning process starts, at least for us anyway. 

Three things Riley shared with me:

1)      Remembering Marcia before Alzheimer’s is increasingly more difficult

2)      She once prayed Marcia would be around for her 18th birthday.  She has accepted that Marcia won’t be in her life like the mothers of her friends will, and she doesn’t want to see her go through a long progression of the disease

3)      She wants to get tested to see if she has a genetic possibility of getting AD.  If she has the gene, she isn’t sure she would want to have kids.     

Riley and Marcia have always been especially close, which isn’t unique for many mother/daughter relationships.  As a child, Riley was so attached to Marcia.  I was such a distant second priority. As an example, every year Marcia and I would go away for a long weekend and my parents would come in and stay with the kids.  Riley would cry the ENTIRE time she was awake.  So one year we started preparing her weeks before we were to go away and Riley said she would try to be strong.  Well the night before we were to leave, Riley started to get a little upset so I went to her room to talk to her.  I told her that I go away for work all the time and I always come back.  Riley replied “I want YOU to go.  I don’t want mom to go”.  There have been other humbling moments for me over the years and I accepted my role as second favorite parent!   They did so much together and talked about everything.  One could just tell that this was going to be a close relationship for a lifetime.


Riley had just turned 15 when Marcia was diagnosed, and was about 13 when we first noticed changes in Marcia.  As close as they had been, those days are harder to recall.  I have often wondered if Ryan would remember much about Marcia before she showed symptoms of AD since he was only 8 when this whole thing began.  I just never thought Riley would have that difficulty.  But the truth is, I’ve been married to Marcia for 20 years and have known her for another 3 years before we married.  But her condition, which continues to progress, seems normal now.  It’s not that I don’t remember the healthy, vibrant Marcia.  It’s just that I’ve adjusted to today’s reality.  Her voice is still on the answering machine, and it amazes me to hear her speak so clearly and in complete sentences and with such spunk, something she just can’t do anymore.  But for Marcia’s kids to be losing what I believe are such treasured memories highlights one more thing I need to do a better job of doing.  I need to find time and a way to bring those memories back and keep them alive.


When Marcia first told the kids she had Alzheimer’s, Riley told me that after researching the disease on her own, she was just hoping Marcia would be around for her 18th birthday.  Well, Riley will be 18 in November and Marcia will be here for that.  Riley knows Marcia will miss many milestones, and she’s accepted that and is as prepared as one could be to lose a parent.  Another very good friend of Marcia’s recently told me she feels like she’s mourning the loss of Marcia again because when they are together, Marcia really can’t talk.  I know in my case, and I believe in Riley’s and our friend’s case, the sadness one might experience upon a death of someone you love is when the loss occurs.  We have grieved the loss of the Marcia we knew a few years ago and it’s so hard to see someone you love deteriorate to where even simple tasks are hard, and we know things will only get harder.  There is still a lot about Marcia to love.  She is so sweet still.  She tries so hard to do everything she does.  And I admire her fight and courage, and I just hope Riley and Ryan will recognize these things too as they get older.  Marcia has been an amazing role model every day she’s with us. 


Riley wanting to get tested is something I’m sure many family members struggle with.  That she would research Alzheimer’s and would give thought to the long term implications for her is not surprising.  Riley doesn’t want to put her kids through what she’s going through, and I believe she wouldn’t want to pass along a gene that might subject her kids to getting the disease.  This is STILL the reason I have a passion for fund raising to find a cure for Alzheimer’s.  The impact to my kids and their generation is the reason I want to make sure a cure is found in their lifetime.  I’m not sure about the testing idea, and plan to ask our neurologist at our next visit in January.


I think we have learned to live with the reality that Marcia’s illness continues to progress and there’s nothing we can do to stop it.  If you are reading this because you have a loved one that is recently diagnosed, this blog doesn’t say anything you won’t read on your own from any other source.  Enjoy every moment you can, one day at a time.  Three years after Marcia’s diagnosis, there is still a lot to love about her.  It’s just that the woman I married is not able to do the things she used to do, as hard as she might try.  I think the whole process of getting a diagnosis, which took close to 2 years, and the stunning diagnosis for someone so young, puts us in a funk usually accompanied by death, even though there is many years of life left.  I can’t speak intelligently about the mourning process other situations bring.  But I do know that I went through a mourning process with Marcia already.  I was devastated, distracted, sad, and emotional.  I needed space, and I needed to talk about this.  I remember writing that someday I would be a single father.  And I have been there for quite some time now.  I’m just taking care of Marcia too.

Wednesday, September 25, 2013

Medical roll call

The last two weeks have been unusually busy, medically speaking, touching cancer, Alzheimer’s and Arthritis.  Marcia started with her six month oncology checkup, three days later we had our quarterly visit to NYC to meet with her neurologist, and the following week, we met with her orthopedic doctor.  Marcia’s cancer story is a happy one.  She’s 2 ½ years cancer-free and every visit we’ve had since her lumpectomy has been a positive one.  I haven’t written about the need for an orthopedic doctor before now.  This is where perspective is evident.  Marcia has Alzheimer’s, breast cancer, spinal stenosis and arthritis in her hips.  Anything that’s treatable doesn’t make the radar screen these days.  Marcia has been going to physical therapy since May and while not totally pain free, she has less discomfort than she did earlier in the year.  Her doctor believes we’ve given PT a fair shot.  This morning Marcia had a minor surgical procedure (steroid injection) that will hopefully alleviate her back pain for a long time.


If you’re keeping score, she’s beating cancer and arthritis.  Marcia is a fighter and has overcome one devastating or depressing diagnosis after another.  I wish I could say the same for Alzheimer’s.  To my knowledge, Alzheimer’s is undefeated.  Everyone dies with it, or from it.  Our meeting with her neurologist in New York City was both a good and sad day.  It was a good day because I watched her give her best effort to eat and get dressed with intense concentration. While that may not sound like much, I’m overwhelmed with pride when I watch her keep trying to do things that are increasingly harder to do.  It was a good day because I saw her laugh and smile when we were meeting with Dr. Honig.  By the way, Columbia University is a teaching hospital, so we rarely meet with Dr Honig alone.  Usually he has an intern or a student with him.  This time we were joined by an intern, a fellow and another doctor.  I didn’t mind, and Marcia didn’t appear to mind either.  And she tried so hard to do all the tests she was put through and didn’t seem to mind the crowd observing her.  And it was a good day because Marcia agreed with Dr Honig that she would give Adult Day Centers a try. ……


But it was a sad day.  Several times during our 45 minute appointment I felt an overwhelming emotional response to the tests he put her through.  None of the questions he asked her or things he asked her to do are new.  He asks the same questions every time and puts her through pretty much the same drills every time we see him.  And it’s heartbreaking because you don’t have to be a neurologist to see how things are progressively worse.  She can’t repeat “no ifs, ands or buts”.  She didn’t know what day of the week it was, though it may have been more that she just couldn’t say “Thursday”.  She kept putting her finger on the desk and was trying to do a Monday, Tuesday, Wednesday like cadence instead of using words, or so I thought.  Dr Honig asked if she wanted to write it on paper.  She tried, but didn’t really know what to write.  Then he asked her what year it was.  In past blog entries I’ve written that Marcia has known what year it is, but she would say “two-oh-one-three”, with more than just a passing effort, as opposed to” two thousand thirteen”.  This time she wrote “Monday” on the paper.  Finally, he asked her to take “this piece of paper in your right hand, fold it and give it to your husband”.  She took it in her left hand and gave it to me without folding it.  While watching all of these tests make me want to cry, Marcia reacted to each request with only a little frustration about not being able to verbalize her answers.  She used to hate these tests and would get upset because they made her feel “stupid”.   She really doesn’t appear to feel that way anymore.  She listens intently to Dr Honig’s questions and requests and gives her best effort.  And I think she believes she’s doing fine.


Marcia’s language skills have noticeably deteriorated since May.  All of us who spend any time with Marcia know this.  Dr. Honig commented not just on diminished verbal ability, he also quickly picked up on her voice changes, in both pitch and volume.  She’s very soft spoken and rarely says more than a word or two.  It’s also clear that while language is the most challenging of her symptoms, just processing information is more difficult and we (family, Dr. Honig) are increasingly concerned about her being alone.


We are moving forward with enrolling her in a local Adult Day Center in Somerset County. We’ve completed the medical forms and are planning an “interview” for October 2nd.  We plan to start with one or two days a week and expand as Marcia feels more comfortable.  While this will be just one more significant event in her progression, this one feels better than some of the other milestones, because we know she will be looked after and safe for longer periods of time.