During the course of my book writing, I divided my journal entries into categories and eliminated the personal family stuff. This may be of interest to someone at some point, so I thought I would "put it on record". The categories I chose are cognition concerns, faith, and writing.
Cognition concerns
August 12, 2008
My fear is that I am not only looking at a
future coping with PD, but that I may be dealing with some form of dementia
(not uncommon in late stage PD, but certainly not an expected side effect at
this point). This is based on what I
have been experiencing (that led to my having to stop working) as well as test
results. If it is some form of dementia
(which includes Alzheimer’s), how fast will it progress? What will the prognosis be? Linda and I have been talking about a special
trip for our 40th anniversary next year. Should we take the trip this year? Should we sell our house and move closer to
the kids as we have been talking about.
Should Linda retire? At what
point will I be unable to live with her if my condition declines?
Am I blowing this out of proportion? Am I imagining things? It doesn’t feel like it. However, I need to keep gathering information
that will allow us to make informed decisions.
Meanwhile, I want to make good use of this “window” if that is what it
is. I want to write stories about my
life for Kevin & Brian. I will check
out some vacation ideas for October for Linda and me. Plus I want to take some time to just enjoy
life and my family. It gives you a
different perspective when you think that the window may be closing sooner than
later. I can only imagine how that
perspective will change if I find out that this is true.
September 10, 2008
I was still worn out on Monday when I drove into CS to
drop off the check from the sale of the Adam’s Place unit to Steve (our
financial advisor). Was proud of myself
for remembering that I was close to Sam’s and could take the Subaru in to have
the tires rotated. The bad news is that
I had brought Little Fox with me for the trip into town (I like to bring him
with me when I can so he doesn’t have to be alone) and forgot all about him
when I went into Sam’s to have them do the work on the car. Fifteen minutes later I was walking around in
the store when it occurred to me that Little Fox was in the car. I walked outside and they had pulled the car
into a bay, put it on a lift and started taking the tires off. Poor Little Fox was scared stiff. The mechanics let him out (undoubtedly
wondering why I would subject him to something like that) and we waited outside
until they were done. No harm, no
foul. Just another indication that I am
not thinking clearly.
October 8, 2008
I am still not sure what is going on with me, but my
educated guess (after reading “Life in the Balance”) is that I may have PDD (a
combination of Parkinson’s and Lewy Body Dementia). I hope I am wrong. It just sounds like I have the same symptoms
he did in the early stages. If I start
having fainting spells and/or violent dreams (body movements, etc., associated
with dreams) it will be confirmation. I
am having what I would call “weird” dreams every night. Plus intermittent bouts of confusion and
reduced acuity. I have read that the
average life expectancy for people with this disease is eight years. I have also read that the range is 2-20 years
with a “typical” range of 4-7 years. If
this is the case and it comes to pass, I will be glad that Linda will have the
extra financial security of my life insurance ($250,000).
October 16, 2008
The weird dreams continue.
It seems clear that something is going wrong upstairs. Is it just the PD or something more?
October 30, 2008
Well, I survived the neuropsychological exam at NJMC on
Tuesday. I wanted to get it over with
but I was convinced it would turn me into “a pile of goo”. So I went into it with some anxiety. Linda and I met with Brian Hoyt (Ph.D. in
neuropsychology) and his assistant, Jenny (looked like a student), who
administered the test. We talked for
about an hour about background stuff (employment, education, work with doctors,
symptoms I am experiencing, etc.) and then I talked with them alone for about
15 minutes before the testing started.
Gave them all the written material they asked for-again lots of
background stuff relating to memory, cognition, personality, health, etc.
The testing was much more extensive than I received at Dr.
Grabert’s office though it was clearly going down the same road. Some of the tests were identical (picture
recognition, red-green-blue lists) and some were similar (same test, different
content-story exercise, graphic design recall, number/letter recall). Many completely new tests including small
motor skills (put shaped pegs in cribbage-type board with both hands-took a
long time with left hand), design duplication with blocks. Did very well with vocabulary and picture
recognition.
The story and word recall involved too much information
too fast and, as before, I did not do well.
I told them at the wrapup that I know I did well on some things,
probably OK on others and poorly on some.
They told us up front that this would be a “check-up” on all areas of my
brain. So now the question is, what is
not functioning normally, what does it mean and where do we go from here. At this point, I do not feel that this is
going in a good direction.
January 2, 2009
The NJMC neuropsych results finally arrived on 12/31. While there were many positives in terms of
the state of my cognition, the report included some extremely troubling
news. The testing confirmed my problems
with processing/retention of information received verbally (stories/groups of
words). Information
processing/concentration was mildly impaired/average. Verbal learning was moderately impaired and
verbal memory was mildly to moderately impaired. Verbal list free recall was below
average. Verbal list recognition was
mildly to moderately impaired. Verbal
fluency (animal naming?) was below average.
Fine motor coordination was moderately to severely impaired (right hand)
and severely impaired (left hand).
Most concerning was a comment in the summary
regarding a review of my recent brain MRI noting that “given the degree of
atrophy another neurodegenerative process such as Alzheimer’s disease, Lewy
body dementia, or a frontotemporal dementia may be involved” in addition to any
degenerative process associated with PD.
This information is very different from what we were told by Dr. Kluger
in November. Not surprising as he was
dealing with partial information (I was very upset at the time because of
this).
Clearly these cognition/atrophy issues are a
bigger concern right now than my PD which is still being described as “early
stage”.
I left a message with Dr. K to discuss next
steps.
I have spent a good deal of time on the
internet today gathering information relative to potential issues raised in
this report as well as terms that Linda and I didn’t understand. I can’t say that there are any real rays of
hope-almost all the news is bad related to this atrophy issue. My sense is that I am looking at another 2-10
years, some of which may be in a very debilitated state, possibly requiring
that I be in a nursing home. I doubt
that the atrophy is related strictly to the PD (with no dementia component) as
it is so mild at this point.
We’ll see what Dr. K recommends as next steps. Don’t know if this will qualify me for
disability or if the situation is still too tentative (the atrophy deal doesn’t
sound very tentative). The months ahead
will likely be challenging for Linda and me with some important decisions to
made regarding her retirement, where we will live, etc.
January 22, 2009
The journey continues.
I am glad to have Lenore on board with regard to my health
problems. I have shared some detail with
her and she has given me some feedback and articles from a neurologist at
OSU. She has agreed to keep my
information confidential. All the
feedback I have gotten so far is that my situation is potentially serious buy
inconclusive at this time. At the same
time, it is clear that these “mind problems” are difficult to diagnose. Because I am intelligent, it seems that I may
have more “mental inventory” to use up before issues become more apparent. In most cases, a specific diagnosis cannot be
made until an autopsy is done. Based on
what I have read, my guess is that I have FTD/MND rather than true PD. Turns out that FTD is about as common as AD
and strikes people 45-65 years old. Not
much memory deficit (my memory overall is still good). Motor symptoms similar to PD. Will have to watch out for the behavioral
symptoms. They mention overeating (I
have put on about 15-20 pounds over the last 5 months). Looks like this one progresses quickly with
death occurring about 1.3 years after diagnosis. Clearly, we are not at a point where a
diagnosis can be made. Hopefully never. Perhaps it will turn out to be some type of
static condition and the atrophy will not get worse.
January 26, 2009
I have had a couple of incidents lately where I have said
some mean things to Linda. The first was
when we drove to Vegas. I was very
tired, despite sleeping at least a couple hours in the car, when we got into
town. I was having trouble with the
Mapquest directions and made about 5 mistakes in a row in interpreting them,
which upset me. I became irritated with
Linda for no good reason and had to apologize later. Then yesterday when we were watching Dani
& Kaya while the rest went out for dinner, I overreacted to what I took as
criticism from Linda at the dinner table regarding dealing with Dani. It ended up escalating and we both said some
nasty things. Once again, I was
extremely tired at the time.
January 29, 2009
I started feeling yesterday (and feel again
today) that my clarity/acuity is slipping again. It was giving me problems in August, but
seemed to improve in September/October and stayed OK since then. I thought it might be related to either the
acupuncture and/or my B12 regimen. I had
reduced my B12 to one/week based on the feedback from Jeff Fisher’s neurologist
colleague. I am going back to 1/day to
see if that helps.
February 9, 2009
We had our Denver
doctor appointment last Thursday. Here
is an email I sent to Berni:
Hi Berni & Hank-
We were pleased with the
outcome of the appointment yesterday, all things considered. I had only seen this doctor once before-I was
switched to him because my previous doc's specialty is movement disorders
only. This new guy has that and also
cognition/other neurodegenerative stuff.
After talking, reviewing the neuropsych results, examining me, and
reviewing the MRI's, he said he does not agree with either the previous doc or
the neuropsych exam regarding atrophy and potential for the other nasty stuff
at this time. Of course, this was huge
for us. On the PD front, that is now to
a point that he prescribed selegiline (5mg starting 1/day then 2/day after 2
weeks). This is a PD med. He thought this would potentially help with
the tremors, fatigue, and cognition. Other
action steps:
- he is having me meet with a doc in the
interactive medicine department to discuss strategies to address fatigue and
other issues
- he told me to increase my COQ10 from the
current 300 mg to 800 mg daily
- continue B12 1000 mg/day and other
supplements
- he had me add L-Carnitine to my supplement
regimen
- he wants me to do at least 30 minutes of
cardio exercise 5 days/wk
He also gave me his email
and asked that we stay in touch regarding any issues, how I am doing with the
meds, etc. This was also huge for us
because we have felt "on our own" so much for a while now. It is very comforting to be able to
communicate with him in between appointments.
Our next appt. will be in 3 months.
He encouraged us to start
the SSDI paperwork. He said it is
possible that I may feel well enough to work after the meds kick in, but that
was not a sure thing. He said that would
take a month.
Nothing much seems to be a
sure thing with PD. It affects everyone
differently, it seems. There was an
excellent PBS program on PD a couple nights ago called "My Father, My
Brother, and Me". Predicting how
individuals will react to meds seems also to be a crapshoot. Also meds that have been effective can lose
their effectiveness as the disease progresses.
That rate at which it progresses varies from person to person. All that said, it is a more hopeful option
than the other stuff we were looking at.
Naturally, we hope that your
folks reaction will be at least similar.
However, I want to know what they have to say either way. Please don't tell them to stop the presses
because we got this more encouraging news.
We have had conflicting reactions from folks that know their stuff at a
number of points along the way already.
Thanks to you and Hank for
your prayers and support.
Love,
Kirk
February 26, 2009
Sometime recently
I mentioned to Linda that I think my assets up north are headed south. I just don’t know if the destination is South
Carolina, South America, or the South Pole.
I continue to experience periodic “events” that are not normal. When we were playing golf with the Moore’s
last week, I was playing a Titleist 3 golf ball and had another in my
pocket. After teeing off, I checked my
pocket and was surprised that there was only one Titleist 3 in my pocket. It took me a few moments to realize that the
other was out in the fairway. Yesterday,
I sent an email to my choir director giving her information on when I would be
available to sing, looking at the calendar as I wrote. Luckily I copied Linda, who emailed me to let
me know I had given incorrect dates. A
short time later I was working on my book.
When I was done, I looked over what I had written and had to correct a
number of goofy mistakes, including haven given 1970 as the year Brian &
Sybil were married (in fact, it was 2000).
I have still not heard back from USC, but
regardless of what they say, I know something is going wrong “up north”. My intuition since learning about the PD
diagnosis (that one blind-sided me) has been correct. It will likely take some time to have this
confirmed and receive some type of diagnosis.
Meanwhile, we will just have keep making the best decisions we can
knowing God is in charge.
March 12, 2009
We got a voicemail from Berni Thursday
evening telling us that the doctors at USC had completed their review of my
MRI’s. I believe she said that there was
a neurologist, neuroradiologist, and neurosurgeon involved. They all agreed that they saw nothing for me
to be concerned about. The atrophy they
saw was normal for someone my age. Of
course, this is the news we had been hoping for. It doesn’t explain the cognition issues that
exist, but it does give us hope that I may not be looking at the bad news
dementia-stuff that Dr. Hoyt mentioned in his neuropsych report. So we can focus on the PD and continue to
work on sorting out the other stuff.
We’ll see what happens at our next appointment with Dr. Corbin on March
23.
I read somewhere that nothing strikes fear
in the hearts of older people like Alzheimer’s.
I am sure that cancer and heart problems are right up there too. However, the idea of gradually losing the ability
to think clearly, remember things and people, and take care of myself (whether
it be due to AD or one of the other dementias-all of which are terminal) is
scary. Not only for me, but for Linda
and my family as well. I hope this will
not happen, but I can’t help but remember what Dr. Graboys said in his book
about his medical team saying he didn’t have dementia and then changing their
mind a year later. Either way, it is in
God’s hands.
March 19, 2009
I am becoming more fearful about the
possibility of some type of dementia based on the way I have been feeling. I mentioned my continued “fogginess” to Dr.
Kluger via email and he recommended that I start on Aricept, an Alzheimer’s
medication also used to treat symptoms of folks with MCI and slow progression. Further internet research has indicated that
there is significant risk for development of Alzheimer’s in people who have
been diagnosed with amnestic mild cognitive impairment (AMCI). Apparently, 10-15% of patients develop AD
within the first year and that % continues in subsequent years.
I wrestle with how much to share about what
I am learning and feeling/fearing with Linda.
She is afraid I am pushing ahead too fast and reading into things too
much. She is afraid I will give up and
not do the proactive things that are in my control like exercise and losing
weight. She accuses me of being too
caught up in “doom and gloom” and being too quick to believe the worst. I know that this is a real danger and I try
to protect against it. However, I feel
compelled to learn everything I can so I can advocate for myself. We sometimes (like yesterday) end up in
disagreements that are emotionally charged, which is normal. However, we agree that it is important to
keep communicating.
I wrote an email to Kev and Brian today to
update them on the details of my latest health information, retirement, SSDI,
and moving plans. I have held off on
some of the health stuff as it has seemed speculative. However, it now seems to have enough
substance that I wanted them to be “on board”.
I don’t want them to worry (though I am sure they will). I would want to know if they were dealing
with problems, so I feel that should work both ways. There is no need for Linda and I to go
through this alone.
March 24, 2009
Dr. Hoyt from NJMC called on Friday in response to my
questions regarding the atrophy issue.
Turns out he had not seen the MRI’s and was going by what Dr.
Klepitskaya had reported to him. This
puts to rest the debate regarding whether or not my July ’08 MRI showed
atrophy. The only one saying “yes” is
Dr. Klepitskaya (“no” votes from Dr. Grabert, Dr. Kluger, and USC). This is good news. The bad news is that Dr. Hoyt confirmed that
AMCI frequently leads to dementia. Based
on his comments, about 25% stay the same and “less than that” improve. I deduce from this that 60+% get
dementia. Other credible information is
less optimistic than that.
This information is starting to sink in, but
not sure I have yet totally “wrapped my mind around it”. Like other new important health news (i.e. my
initial PD diagnosis), my mind keeps coming back to it. Reminds me of how my tongue keeps returning
to the empty spot in my mouth when I have had a tooth pulled. I talked with Judy Heller at church on
Sunday. She was the first one at church
I told about my PD diagnosis last year.
Her husband, George, has been diagnosed with Alzheimer’s. As with my PD diagnosis when I was anxious to
talk with Cookie Hertel about her experience, I am interested in hearing
whatever Judy and George can tell me about their experience even though there
is a chance I won’t advance to dementia.
To some this may seem masochistic, but as I have said before, I prefer
to know what to expect in the event it does happen. At least up to a point so Linda and I can
make informed decisions regarding moving, travel, etc. Judy’s first comment was not to put off
things we want to do such as travel. She
said that she and George would be glad to spend time with Linda and me to share
their experience and what they see ahead.
March 31, 2009
We went to lunch with Judy and George on
Sunday after church at the Village Inn in Monument. We talked for three hours and covered a lot
of ground. They were very open about sharing
their experience and gave us some insights into what we might expect if I am
diagnosed. They were told that a
“typical” timeframe for AD to “run it’s course” is 3-8 years, though it could
be longer. They advised us to not put
off things we want to do and to be sure our legal paperwork is in order. It bothers me that George is very
“fatalistic” about his situation and is not inclined to fight it. We think he is 68. He spoke of a significant family history with
the disease, including his father. They
have three children in Denver, but they don’t seem as “close” as we are with
our kids. They have had a troublesome
relationship with their daughter in particular.
I shared with them that I want to be as proactive as possible because I
want my family to see I am doing whatever I can to prolong my time with
them. For my own part, on one hand I am
not anxious to exit for many reasons but on the other I would like Linda to get
my life insurance in order to ensure her security.
Meanwhile, I continue to experience
“fogginess”/impaired acuity and “memory events”. Any of the events by themselves would not be
a big cause for concern (i.e. senior moments).
However, taken collectively in conjunction with the amci diagnosis, it
is worrisome. For example:
- Last
Thursday night during the night (after it had snowed all day) I wondered
whether I had turned off the water and unhooked the hose after cleaning
the hot tub the previous week (if the hose is left on and there is a hard
freeze, the pipe could burst). I
checked the next day and, sure enough, I had left the water on and the
hose hooked up. Luckily, the
connection was not water-tight so that there was a light mist at the
connection which kept the pipe from freezing (and created an interesting
array of icicles).
- Last
week I wrote an email to church regarding the job search informational
meeting Susan and I wanted to hold the following Monday. I am very careful and reread what I
write in these situations to ensure accuracy. The date I provided to have sent out to
the congregation was for the previous Monday.
- I
was writing about Brian and Sybil’s wedding recently and wrote that it
took place in 1970. Of course, it
took place in 2000.
- Last
year when I was still working, I was doing my work plus answering the
phone. Of course, it is difficult
to stay on task when this is happening.
I took a message for a co-worker and went back to work. A while later, it occurred to me that I
better take the message over to my co-worker’s desk before I had a chance
to forget, but I couldn’t find the note at my desk. I checked underneath the desk, in the
wastebasket, etc., but couldn’t find it.
I had no recollection of taking it to his desk already (which
involved getting up and walking out of my cubicle and around the corner
about 50 feet, opening his door and putting it on his desk), but decided
to check anyway. Sure enough,
that’s where it was.
- Last
August I was at the doctor’s office getting a blood test. I met someone there from Oakland (our
old town in NJ). She had a son
Kevin’s age and we talked about them.
I was sharing about Kevin’s involvement in sports and could only
remember that he was on the tennis and soccer teams. It took me about 30 minutes before I
could finally remember that he was also on the hockey team for 4 years.
- I
was talking with Kevin on our deck last summer and asked him when Bonnie
and Dennis would be leaving to go back to Phoenix. He seemed alarmed and told me I had
asked that question 5 minutes earlier.
August 17, 2009
Linda and I went to see Dr. Kluger last Thursday. I had become fairly convinced that I was
experiencing LBD symptoms and was pushing him for a response so that, if he
agreed, we could use that information for SSDI purposes. At the exam, he made it clear to me (for the
first time) that 30-40% of PD patients experience some type of cognition
problems. Also, I had read a John
Hopkins memory white paper a few days earlier and realized that I fit the
description of MCI, not dementia. While
this doesn’t mean I am out of the woods, it is a great relief!
September 11, 2009
I need to get back to my writing on the new
book. Meanwhile, I found more
interesting information online last night on PD and cognition in a textbook
from 2004. It talked about PD having a
prodromal phase of up to two decades before symptoms become overt. Prior to that, different things can show up
especially under stress. I have
documented my experiences in the 90’s that fit that description. Also, my experiences at Global and Navpress
are consistent with this. Lots of good
info on cognition. Seems that this is a
problem with many PD folks, especially those who get it after 60 and even more
so at 70+. Talked about life expectancy
of 10 to 15 years from PD symptom onset with faster progression where primary
symptoms are stiffness/slowness as opposed to tremor. I have all three, but Dr. Kluger describes my
tremor as mild-this is clearly my resting tremor.
September 29, 2009
Dear Dr. Lieberman:
I am seriously considering making an
appointment with your organization to discuss my cognition issues. However, since I live in the Denver area, I
would like to share information with you in advance to help you determine if
you think this would be advisable and, if so, who I should meet with. I do have a place to stay in Phoenix.
I was diagnosed with PD in 4/08 and am now
told I am in H&Y stage 3. I quickly
developed cognition symptoms and took a neuropsychological exam in 10/08. The diagnosis was aMCI. I am working with Dr. Benzi Kluger at the
University of CO Hospital who specializes in movement disorders/cognition
issues and Dr. Brian Hoyt, Staff Neuropsychologist at NJMC. I will attach a list of current meds and
supplements. I have an appointment
scheduled with Dr. Kluger on 11/19 and Dr. Hoyt is working on an appointment
for a new neuropysych in November to establish a new baseline. I will attach a summary of the results from
last October.
I have discussed with Dr. Kluger and Dr.
Hoyt my interest in a second opinion relating to my cognition issues and they
agree this is a good idea. My goal is to
get a better handle on what I am dealing with, if possible, and identify any
opportunities for treatment. Your Shaking
Up book’s chapter on dementia was of particular interest. I would like to share my sense of where I see
myself with regard to what you describe as the features of dementia:
- Confusion: I have come
to describe the way I feel as mildly to moderately inebriated. Periods of concentration or any stress
accentuate this and result in my being more easily confused. This shows up in a variety of ways,
including uncharacteristic confusion with math calculations. Maintaining attention as well as
processing verbal info has been a problem for over a year.
- Memory
loss: Memory
relating to verbal info is a problem and was verified by the
neuropsych. I have trouble keeping
track of appointments and tasks without the help of lists and a personal
calendar. An example of this
occurred last week when a friend asked if we could meet the next day. I said I was wide open, but later
realized I had two appointments that morning which I had forgotten. This is not an isolated example.
- Unusual
behavior: For
about the last nine months I have had problems with irritability and angry
outbursts of unusual intensity that subside quickly. I also have been having very vivid and,
sometimes, scary dreams since about 7/08, long before I started taking any
PD meds (started with selegiline 3/09 and just started sinemet 8/09-tried
requip during 7/09 but had to stop as it made me too tired). I take Wellbutrin, but I am prone to
mood shifts.
- Daytime
drowsiness: This
has been a problem since about 2/08 that caused me to cut back my work as
a Marketing Director to part-time.
Even after that, I would have trouble staying awake on my drive
home from work. I stopped working
8/08 primarily due to fatigue, acuity issues, memory issues, and shakiness
that were all amplified by any stress.
I have had to cut back on exercise even though I know it is a very
good thing. A few hours on the
computer or anything that involves concentration leaves me tired and
“fuzzy”. I typically take one nap
each day lasting anywhere from 30-60 minutes and still sleep about 9 hours
each night. I use a CPAP and have
made sure it is set and working properly.
I have an opportunity to meet with a
neurologist/psychiatry specialist in Wheatridge, Dr. William Wagner, who was
recommended by a friend. I may do this
in addition to a meeting with your group pending your reaction.
I appreciate your consideration of this
matter and realize there is only so much you can discern based on what I am
telling you. In any case, thank you for
your book and the important groundbreaking work you have done for so many
years.
By the way, I also am a person of
faith. I rely on God and know He is in
control, but believe that He wants me to wrestle with this and be proactive.
Sincerely,
Kirk W. Hall
Faith
August 12, 2008
Most importantly, I need to remember that
God is in charge and that He will help my family and me through this difficult
time. Reading “The Shack” has helped
remind me that God does not plan for bad things to happen to us and that we can
depend on Him to be a light when times are dark. I look forward to the promise of everlasting
life as a result of Jesus’ sacrifice.
However, I don’t know how to deal with the agony of the thought of
leaving Linda and my family. I guess I
will have to accept that they will be in God’s hands and that we will be
together again one day in heaven.
August 14, 2008
It occurred to me in the middle of the night (a message
from God?) that I need to be spending less time worrying about my situation and
more time caring for others. I know that
lots of people are praying for me. I
plan to spend more time praying for other people, especially friends and
family.
As I was writing this, a friend from our
church choir (Barbara Carlson) came to the door to drop off a prayer shawl (for
me to wear on good or bad days to symbolically surround me with God’s love)
that had been made for me by the prayer ministry at church. Some might think this was coincidental. I know it was not. God has chosen to let me know that He is
watching out for me through the kindness and prayers of others. I am totally humbled and thankful that He and
my friends would do this for me. What a
great sense of comfort.
Since Carson will be with us this weekend, I
made arrangements to sing at church (a duet with Pat Jahla) this Sunday. I have not sung much all summer and miss
it. Part of me is afraid that I won’t be
able to continue singing. Anyway, I
thought about doing a solo and what songs I might do, but a clear thought came
to me that I would like to do my favorite hymn (Be Still My Soul) and that I
would like Pat to do it with me. She is
a dear friend and we have sung together for 14 years, but never done a
duet. Pat has been dealing with serious
heart issues for over a year. Once again,
I feel like God helped me choose this song.
Once I had picked it and looked at the words, I realized how appropriate
it was for Pat and me to sing this as it is about being at peace and trusting
God.
August 15, 2008
I tried out my prayer shawl this
morning. Felt good with the chill and
dampness. Or perhaps it was the comfort
of the prayers built into it. Probably
both. I prayed more than I have ever
prayed before for everyone I could think of.
I feel God’s presence on a regular basis now. I went to the library yesterday to pick up
some DVD’s (including a cute-looking barnyard animated one that Carson should
like, if he can come-he had stomach problems yesterday). Two DVD’s that I hadn’t seen before were
there- “Conversations with God” (based on the best-selling book) and “The
Gospel of John”. Watched the first one
and thought it was great-an amazing story.
Was it a coincidence that these movies were
sitting there waiting for me? I don’t
think so. Was it my imagination that
when I put that prayer shawl around my shoulders I felt close to God? I don’t think so. Was it just good fortune that I had this idea
for a special dinner for Linda and me to celebrate our love and that it came
together so nicely? I don’t think
so. Was it just a fluke that I picked
“Be Still My Soul” to sing without thinking about the message and then that it
occurred to me that I should sing it with Pat (who I have never sung a duet
with before)? I don’t think so. Was it nothing out of the ordinary that
Barbara dropped off that prayer shawl just after I had written about the
importance of praying for others? In
fact, let me be clear. I truly believe
the answer to these questions is no. It
was God at work in my life.
September 10, 2008
I want to capture something before I forget. At my 9/4 acupuncture treatment, I was
praying (for others as well as myself) and meditating about my situation when a
thought came clearly into my mind: “Be
still and know that I am God”. I
continue to be amazed by God’s presence in my daily life. I know I have my “antenna up” in a way that I
never have before. I want to work at
keeping this message “front and center” in my life.
September 17, 2008
The stock market is in serious turmoil. So much uncertainty with problems in the financial
sector, high unemployment, the real estate problems, two hurricanes in the last
month, high gas prices (coming down some-were under $3.50/gallon before the
latest hurricane), election wrangling, ongoing terrorism concerns, inflation,
weak dollar, war in Middle East, huge deficit, etc.
“Be still and know that I am God.” I’m trying.
Speaking of election wrangling, it is so disappointing to
see how this election is being conducted.
It has been this way for a while, but it hasn’t always been this bad. Both sides are willing to say things that are
either false or at least misleading. It
is all so negative. Our country seems
deeply divided and too many people are willing to take sides with only a
superficial understanding of the issues and what their “candidate” will REALLY
do to deal with them. I guess it is a
reflection of the personal angst over economic fears, the war, the threat of
terrorism, the cost of health care, concerns regarding the future of social
security, the rising cost of higher education, etc.
“Be still and know that I am God.” How do people without faith get through times
like these?
December 8, 2008
I am feeling very fortunate lately. Kind of like I am in the eye of a hurricane
in a protective cocoon. The hurricane is
the PD, economic stress, and the prospect of having to work again. The cocoon is the love of my wife, family and
friends, being able to sing, and receiving unemployment compensation. Michael J. Fox said “I am a lucky man”. I would say that as well, but I prefer to say
that I am a blessed man because I know God is watching over me.
January 26, 2009
I picked out a Josh Groban CD at random for Linda and I to
listen to about a week ago. One of the
songs on that CD is “You Are Loved”.
When I first heard that song (a couple years ago, I think), I really
liked it and thought it would be a good song to do at church (but never
did). I did like it enough to download
the sheet music. I hear it as a message
from God to a troubled world. The timing
seemed right to reconsider doing this. I
contacted our choir director and mentioned it to her. When we met this Sunday to rehearse some
other music, we talked about it. She
informed me that the theme for the next two Sundays at church would be
love. I guess this could be a
coincidence, just as it could have been chance when I walked into that church
in Michigan and heard the sermon about “building your house on rock” all those
years ago. I don’t think so. I think I am supposed to sing this song. I know I want to, in spite of the fact that
singing solos is tough on my nervous system these days.
March 25, 2009
Looking back at the last couple of years,
the road has seemed awfully bumpy as we traveled it. In hindsight, it is clear that we have been
unbelievably blessed. In December, 2006,
I found out I would not be receiving an offer for a position as Marketing
Director at the Christian and Missionary Alliance that had been, for all
intents and purposes, promised to me.
After all we had been through in the previous few years, including the
failure of my career services business, an expensive legal battle with my
former career services partner, and a series of jobs that only lasted a few
months each, Linda and I were really down in the dumps. I am sorry to say that we felt as though God
had abandoned us and started to question our faith.
I can see now that He never abandoned us,
and it was in this dark hour that a series of events began to unfold that now
seem miraculous, though they were tumultuous at the time. In February 2007, I was hired as Marketing
Director at Navpress, a Christian publishing company. The compensation was more than I would have
received at C&MA and allowed us to pay off debt associated with the lawsuit
that was threatening our financial security and an ongoing source of stress for
both Linda and me. I can honestly say
that it was through no fault of mine that I lost this job after only 5 months
(another huge bump at the time).
However, Navpress assured me that the elimination of my position was not
based on poor performance (my performance had been rated excellent a month
earlier and I had received a nice bonus) and provided a 3-month severance
program. At the end of September 2007, I
was able to apply for unemployment and received payments in October and part of
November. I accepted a position as
Marketing Director at the Zeal Group in late December that paid less than I had
been making, but provided more than enough income based on our cash flow needs. After only 3 months, I cut back to 30 hours
per week the beginning of March 2008, for reasons I didn’t fully understand but
attributed to stress. In late April, I
was diagnosed with early stage Parkinson’s.
I struggled more and more over the next few months and was able to
negotiate an end to my employment on August 8, 2008 despite initial resistance
from Zeal. The negotiation involved
elimination of my position (they were struggling and the Colorado Springs
office is now closed), which allowed me to once again be eligible for
unemployment. I was able to re-open the
claim from the previous year and collect on that through September. Once again, fortune smiled as I was able to
file a new claim starting in October (the qualifying period included much of my
income at Navpress as well as Zeal so I was able to receive the maximum
benefit). This turned out to be crucial
as the economy and our investments went south because we were able to live off
our cash flow and did not have to liquidate any funds. Now, as this new claim is about to expire, it
appears that I will receive a 3-month emergency extension, which covers us to
the end of June. Hopefully the SSDI
claim will be approved shortly after this and our financial future will be much
more secure.
A case could be made that I did not deserve to be blessed
like this based on my lack of faith when things really got tough. Fortunately, God does not work that way. In fact, as I look back on my life and
consider the “dark hours”, I consistently see God’s hand at work in leading me
through to the “other side”. An ongoing
component of my prayers for many years has been that God will “show me the path
that He would have me follow”. That
prayer continues to be answered even when I struggle to find the courage to
follow that path.
August 17, 2009
Friday night was cloudy when we went to bed. When we got up about 4 am to go to the
bathroom (pee outside the tent), the stars were out and a sliver of moon-it was
beautiful. When we went back to bed, I
was awake for a while thinking about my book project. I thought about the working title quite a bit
and what would capture the essence of what I wanted to convey. The title I had been using was wordy and
negative (though witty in a depressing way).
I was thinking that what I wanted to write about was the confluence of
my personal experience with PD & cognition issues with my faith in the
context of my important relationships with Linda, family, friends (including
other patients), and my doctors. I have
been clear about what I wanted to accomplish and who the target audience will
be. Anyway, it occurred to me that I
(and others like me) are at an important crossroads. Life is going to be different in the future. There are choices that need to made in terms
of how to react, level of proactive engagement (exercise, mental activity,
nutrition, etc.), choice of doctor, plans for the future. These are things that we can control. Other things will not be in our control to a
large extent. One of the choices I have
made is to depend on God and submit to His will. I will try to do my part, but in the end is a
wonderful relief to know that He will take care of me and my family.
September 29, 2009
Another God thing.
I had contacted Cleveland Clinic and St. Joseph’s Hospital in Phoenix
(both top 10 neurology hospitals) after my last Kluger appt to pursue idea of
more testing related to cognition and “second opinion”. Both responded positively and invited me to
make an appt. The doctor at St. Joes was
a Dr. Lieberman at their Barrow Neurological Institute. I wasn’t sure what to do. Kluger said he would recommend Cleveland
Clinic but wasn’t familiar with St. Joe’s.
He also said I could speak with Dr. Hoyt for an opinion. Dr. Hoyt said he could do another neuropsych
for a new baseline in November and I said OK.
Subsequently, I was talking with my PD neighbor Lloyd and his wife at
length and he loaned me a PD book he recommended I read. Turns out it was written by Dr. Abraham
Lieberman. I went directly to his
chapter on dementia. It was very
enlightening and convinced me that he really understood this issue in PD
situations. Then I read that he was at
Barrow’s and checked the referral I had been given and, of course, it was
him. Once again, this felt like God was
telling me something, so I contacted St. Joe’s once again and confirmed that
they take our insurance. I talked it
over with Linda and we decided to go for it.
Writing
November 3, 2008
It occurred to me during the night (Saturday night, I
think) that I might consider writing something resembling a book with a focus
on my life with Linda. Feels like a good
idea. Reminds me of when the girl in “I
Remember Mama” is given advice to write about what she knows. Might be more interesting to the boys. Also ties in nicely with my poem, which seems
significant.
November 6, 2008
After we picked up Carson, Dani, & Doug from school we
were on our way to pick up Kaya. I suggested
that we take a “short-cut” and go the back way from Quebec to University that
goes by the entrance to Gleneagles Village.
While stopped at the stop sign by the entrance to GV, Carson looked over
and said (out of the blue) that he would “like to go in there some time”. We hadn’t said a word about it. What a coincidence!? Linda and I looked at each other, smiled, and
said “maybe we would do that some time”.
January 29, 2009
I am making good progress on my book now. I feel a sense of focus as well as
urgency. I hope the first chapter is not
too tedious with all the detail. The
second and third chapters balance that out, I think. The fourth chapter is starting to take shape. I may approach my former colleague at Cook,
Liz Duckworth, who is an editor at Waterbrook Press now, to get her
feedback. My “PD friends” have commented
to me that there isn’t much out there about the disease and its’ ramifications
written by people who have it. Two I
have read are “Lucky Man” by Michael J. Fox (PD) and “Life in the Balance” by
Thomas Graboys, MD (PD/Lewy body disease).
If, by some chance, a publisher feels that my story might be interesting
or helpful to people with whatever I have (TBD) or their caregivers that would
be great. In that event, I am sure there
would be editing involved and perhaps co-writing (as was the case with
Graboys). I am not approaching this idea
with no relevant experience since I was Marketing Director for both Chariot
Victor Publishing (a division of Cook Communications) and Navpress (a division
of the Navigators)-both Christian publishers.
I will hold off on meeting with Liz until after the 2/5 doctor
appointment.
April 8, 2009
I had a busy day yesterday. Made a trip into CS to pick up supplements,
do some shopping at Sam’s (including Linda’s birthday cheesecake), and check
out computers at Best Buy (our computer is seriously outdated and there are
some great deals available). Also picked
up some prescription refills at Walgreens, had a meeting in Monument with a lawyer,
and picked up a few things at WalMart (including MJ Fox’s new book).
While in town, I also met with my friend
from Cook, Lee Hough, who is now a literary agent for Alive
Communications. We talked at length
about my interest in exploring the possibility of publishing a version of my memoir. It would mean a lot to me if my experience
might be helpful to others (i.e. PD/dementia patients, caregivers, families,
baby boomers, etc.). I told him that I
had already written a letter to the MJ Fox Foundation regarding this idea and
the possibility of donating a portion of proceeds to the foundation. Also shared an email response from Dr. Thomas
Graboys (who I quoted in Chapter 1 from his book “Life in the Balance”). He is an advanced stage of both PD and lewy
body disease. Here is what he wrote:
From: Graboys, Thomas Barr,M.D.
[TGRABOYS@PARTNERS.ORG]
Sent: Monday, April 06, 2009 11:02 AM
To: Kirk Hall
Subject: RE: thank you
Bravo tto you mr hall and congrates on
comoleting 8 chapters..writing as your
can onlyimprove your situation..it will be a
legacy to your famiry.keepit up so
important to keep your mind and body
stimultated...keep it up!
My bestTom
Thomas B. Graboys, MD
Professor of Medicine
Harvard Medical School
tgraboys@partners.org
617-731-6811 - direct line
44 Old England Road
Chestnut Hill, MA 02467
I was deeply touched (and motivated) by this
response. Lee and I talked about my
writing and agreed that, if my situation unfolds as it appears, the longer I
can continue to provide information for the book, the more interesting it will
be. This would likely require, as with
Dr. Graboys, a co-writer (which I am open to).
Lee made no promises, but thought the project had merit (that sounds
kind of heartless, which he wasn’t at all, but we were talking business at that
point) and that he would like to see a manuscript when I was ready.
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