Kirk's Blog

parkinsons best blogs badge
Healthline

Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

The Rest of the Iceberg

The paper below written by Diane Cook, Kirk Hall, Linda Hall, Malenna Sumrall, and Terri Schmidt) has been accepted for publication in Neurology:

 

The Rest of the Iceberg

The easily recognizable motor symptoms of Parkinson’s disease (PD) are just the tip of the iceberg. However, beneath the surface lie larger and more troublesome non-motor symptoms. As anyone familiar with the fate of the Titanic can tell you, these are game-changers. Lists of non-motor symptoms include 20+ categories that range from nuisance to life-threatening. At the Second Annual International Palliative Care in PD Working Group in 2016 we, people with PD (PwPD) and their care-partners, were asked to share our experiences with non-motor symptoms. The following stories summarize our talks and provide a window into our lives.

Cook

10 PM: It’s dark, inside and outside. Most people are asleep. I’m not. I have already taken mirtazepine and melatonin. I’m trying to sleep but my skin itches. I get up and rub on some Benadryl. It usually doesn’t work, but I try it anyway. Eventually, I doze off and sleep fitfully. Midnight: I’m awake. I just can’t get comfortable. I’m too cold. I’m too hot. I toss the covers off. My legs have that creepy, crawly, jittery sensation. I get up and walk around the house. After a while I go back to bed. 2 AM: Painful shoulders and hips wake me up. Then I realize my stomach hurts. I go to the kitchen and eat some cheese. That helps me go back to sleep. 3 AM: I hear my husband telling me to stop shouting and to please turn over. I was having one of those terrifying dreams. I turn slowly because I am so achy and stiff. I try to continue sleeping. 4 AM: I get up to go to the bathroom. Sometimes I just stay up. It is less of a struggle to stay up than to try to get back to sleep. I am never sure how much rest my body has gotten. I worry about the physical and cognitive effects of lack of sleep. 5 AM: Gas and flatulence await me as I wake up and begin to move in bed. I drink 2 cups of Miralax hoping that today I will have a bowel movement. Mylanta is my constant companion. I have been to see 4 specialists over 10 years and still have no relief from intermittent constipation, cramping, diarrhea, bloating and gas. If I am constipated for 4-5 days, I become physically ill and am overcome by lightheadedness, nausea and weakness, sometimes to the point that I cannot drive. In pursuit of a remedy, I have drastically restricted my diet so I no longer eat most of the foods I enjoy. In fact, there are far more foods I can’t eat than I can. I am now underweight. 9 PM: The day is over. I again take mirtazepine and melatonin to help me sleep. I take Zantac for my stomach. And I hope, perhaps tonight, each time I wake up, somehow I will be able to roll over and go back to sleep.

K Hall

Cognition issues began soon after my diagnosis with PD and have since been my biggest concern. I initially encountered resistance to open discussion of this subject by doctors and patients as well as lack of online information. However it didn’t take long for me to realize that a significant percentage of PwPD are eventually diagnosed with dementia and that it is a terminal condition. This news would get most people’s attention and I was no exception. In the eight years that have passed since my PD diagnosis I been diagnosed with mild cognitive impairment (MCI). As MCI increases the risk of an eventual dementia diagnosis, I committed to myself to be transparent about the impact this had on life and hoped to encourage open discussion of this subject. Part of honoring this commitment was writing a book on this topic that shared information designed to expand the conversation, outlined scientific ideas and thoughts regarding causation and discussed implications for the future. My own experiences in this prodromal time period have enabled me to continue to live well and productively. Now I have reached acceptance of whatever the outcome may be. My goals are to 1) learn from the past, plan for the future, and live in the moment, 2)focus on quality of life 3) remain engaged as long as possible and 4) finish the race well.

L Hall

Through 47 years of marriage, my husband and I experienced many life events (jobs, children, relocations, surgeries, etc.) which resulted in “planned” relationship role changes. However my current role as care-partner with a PwPD and MCI involves not only planned role changes but also role “shifting”. Just like driving a car with manual transmission, our daily lives are shifting from one gear to another: up, down, neutral and don’t forget reverse! MCI has impacted my husband’s focus, attention, concentration, problem solving, and multi-tasking. As these deficits fluctuate throughout the hours and days our roles must shift. Some shifts include using an updated daily planner/calendar, limiting activity options, and assuring I have his undivided attention.

Driving patterns are an example of how our roles have shifted. Years ago when travelling to Colorado, my husband would drive all the way there. Returning home we would share the driving time. Let’s call that first gear. As years have passed, my husband’s ability to multi-task, concentrate and focus have diminished. Therefore, I now do most of driving to and from the mountains with my husband driving occasionally in areas of minimal traffic or when close to home. We are now living our lives in what I call second gear. For now, we have not yet shifted to third gear where I do all the driving.

Needless to say, the fluctuations and role shifting impacts many areas of our daily life. We have found that effective and sensitive communication helps keep us on course. Oh and don’t forget the benefits of a good sense of humor and lots of laughter. So yes, having PD/MCI is often like driving a car with a manual transmission. Rev up your engines and cherish the journey.

Sumrall

Mood and motivation disorders are among the most challenging non-motor symptoms to diagnose accurately in PD. Depression, a mood disorder, and apathy, a motivation disorder, have distinct characteristics, but they also have characteristics in common.1 Someone who is depressed might benefit from antidepressants; therefore, being diagnosed as apathetic could deprive such a person of needed medication. On the flip side, someone who is apathetic but is diagnosed as depressed might be prescribed unnecessary and possibly harmful medication.2

            My husband was a strong, confident PwPD. He was prescribed antidepressants for depression, however I was never convinced he was depressed. His diagnosis was based on interaction during a doctor’s visit, not a screening scale. So I wonder if there was miscommunication between us and the doctor about mood versus motivation. Yes, he felt the loss that PD had caused him, but he still enjoyed life. Joy and happiness shone on his face until the end.

          In spite of being a care partner who was always on the internet looking for answers, I never discovered apathy as a symptom until late in my husband’s life. Neurologists have only a short time every few months with the patient. Between those visits, the patient and care partner make many observations. I wish that we had been given better information and guidance about how to communicate his symptoms to his doctor. Good communication is absolutely crucial when it comes to PD non-motor symptoms. My husband was likely apathetic, not depressed. The thought that he might have been made worse by years of antidepressants is very hard to live with.

Schmidt

I do not talk about PD, because PD is not the most important part of me. I would rather talk about my grandkids, my family, my friends, my adventures and travels, my years as an emergency and now palliative care physician. However, it is important for health professionals to have some understanding of what it feels like on the inside therefore, here are the top ten things I hate about PD.

10: Is it me or PD?

Is my decision to eat a second piece of cake my old love sweets or the effect of dopamine on the reward system? I do not like that the disease might change my personality.

9: Unpredictability.

Despite taking medications on time, exercising, getting sleep and rest, I cannot predict and know how a day will unfold.

8: Internal weird, hard to describe feelings.

I often do not feel right on the inside. The right and left sides of my body can feel different sizes. I often see, think and feel through a fog of pea soup.

7: Knowing this is the best things will get.

It is difficult to come to grips with the meaning of the words “chronic, progressive, neurologic disease”.

6: My grandkids will remember me for things I could not do.

“Be careful of grandma… she can’t do that.” My wonderful is defined by what I can do, not what I cannot do. I traveled around the world, rafted class 5 rivers, climbed mountains, motorcycled across the continent and rappelled into crevasses. I like to see myself as the glittering, magical “fairy grandmother” but what will my grandkids remember? That I move slowly? Maybe am confused at times? Cannot do the things others in the family do?

5: Everything is work.

It is harder to do things others take for granted. When I get out of the car, I pause, think for a moment, “turn, put your feet on the ground, put your hand on the door post, stand-up…”. Nothing is automatic.

4: I hate asking for help.

I am a caregiver. First as a life guard, then as a nurse, now as a physician. PD takes me out of that role. I have to rely more and more on others. I do not like it and want to scream, “I can do it myself” but I cannot.

3: I am often not excited to get up.

I am not depressed. I wake up comfortable and relaxed but I do not want to start the day because the stiffness, pain and headaches start. It would be nice to wake up, get out of bed and feel good.

2: My biggest fear… that I will lose my mind!

My grandfather had Alzheimer’s, as did my mother. Now, there is a strong likelihood that I will develop dementia related to PD. THIS SCARES ME! I hope when it happens I have associated apathy and do not care. I hope that I do not know that I am a demented old lady. I hope it does not happen to me. I would rather go out with a bang than a whimper, please.

1: It is not the motor stuff; it’s the other stuff.

I am fatigued. It is work to do everything. I often cannot fall asleep (unless I cannot stay awake) and once asleep cannot stay asleep. If I stay asleep too long, I get stiff, so I have to set an alarm to wake up and take meds. Fatigue and insomnia make the best of us foggy. Add to that the slowness of PD and the side effects of the various medications and I am back to thinking through a fog or swimming in pea soup. My mouth is dry, the corners of my mouth are wet, my eyes are dry, my eyes water, my toes spasm, I have hot flashes, I get orthostatic, my head hurts, my neck hurts… the little things add up. None of them is a big deal alone but together they make it hard to forget about that chronic, progressive neurologic disease. Even when you cannot see it on the outside and “my symptoms are under control” I can feel it on the inside and it does not go away. Please remember that!

Share this article:

Continue reading
135 Hits
Kirk Hall

Personal Journal

 

window cover 150x225

 

I kept a personal journal from August 12, 2008 until June 9, 2012 to capture my thoughts and feelings regarding the impact of my PD diagnosis on my life.  I wasn’t thinking at that time about the potential for sharing any of it, but felt that I wanted to have information I could refer to in the future, when details were inevitably going to become hazy or disappear altogether.  This decision has been very helpful in the writing of my memoir for my sons and now, with the writing of this book.

 

I made entries frequently through the first couple years before they became more intermittent as time went by.  Once I had my children’s book published and started my blog, I had less time available, plus the blog (which I started writing without any clear idea of what I would write about in the future) provided an avenue for sharing my story.  I am not sure if I thought that anyone would be interested, but it was a theraputic exercise for me, I think.  I was pleasantly surprised by the amount of interest it seemed to generate.

 

I had originally planned to include these in my book, but decided against it at the last minute.  The following are the selected excerpts from my journal I had planned to include:

 

August 19, 2008

Talked to a very informative lady yesterday morning that I had been referred to by a friend of Linda’s from work.  Her name is Sandy and she has had PD for 17 years.  Meds are no longer effective for her and she is preparing for DBS surgery.  Based on my description of my situation, she also recommended a book called “Life in the Balance” by a doctor who has struggled with PD and related dementia (lewy body dementia).

August 22, 2008

Had my cardiology tests this week.  Everything seems pretty normal in that department, so check another potential contributing issue off the list.  In many ways I am very healthy.  With my family history of heart attacks/strokes, it is good to know that I am not a candidate at this point.  Once again, all roads relating to my symptoms indicate this is a central nervous system problem.  Got my NJMC neuropsychological exam moved up a whole 5 days to October 28.  Patience is a virtue, but I am not good at it.

September 17, 2008

I am continuing with my acupuncture treatments, but not sensing much difference so far (I have had 6 treatments counting the first appointment with 5 more to go).

September 30, 2008

The financial crisis has gotten so bad that the word “depression” has been used.  A “bailout proposal” (poor choice of words as it turns out-the media probably coined that) for the financial industry was presented by the Secretary of the Treasury, Chairman of the FED and Chairman of the SEC to the Senate Finance and Banking committee last Friday (Sept. 26) and was worked on over the weekend by congressional leaders.  They came up with a detailed plan very early Sunday morning.  The plan was voted down (by 10 votes) in the House of Representatives Monday morning, sending the Dow plunging 777 points by the end of the day.  The market is back up today (Tuesday) by 480 points (last I checked) based on hopes that a plan will be passed this week.  I hope this doesn’t ruin our retirement plans.

October 16, 2008

Dr. Klepitskaya answered a lot of questions and reviewed my notes in detail.  She mentioned that fatigue and problems with driving are common with PD, even in the early stages.  She was honest in response to my concern about having had the “dizziness package” since March saying that there is not a clear answer at this point.  Most importantly for me, she told me that she did not think I was “moving toward” lewy body disease based on her observation.  I truly hope she is right.

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, and health.

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. 

November 18, 2008

Friday morning Linda and I worked at the “soup kitchen” downtown.  They have quite an operation there.  I think we served meals to about 700 people including many who were clearly homeless (including families with young children) and some that probably are just having trouble making ends meet (unemployed, etc.).  It was challenging physically (on my feet a lot) and I was a little awkward handing out pastries, desserts, bread, etc. due to my shaky hands.  However, there is a nice camaraderie between the workers and a good feeling from doing something to help others. 

We saw the saddest thing coming home from the club.  A squirrel had apparently been recently run over and was on the side of the road.  As we approached, another squirrel was trying to get the dead squirrel to “wake up”.  I don’t know if squirrels feel anguish or grieve, but if they do that is what was happening.

January 22, 2009

All the feedback I have gotten so far is that my situation is potentially serious but 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. 

I have been having more “muscle spasm” events-momentary jerky movements in my legs or torso.  Last night as I was going to sleep I had a rather intense “jolt” that jerked my whole body.  

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. 

March 12, 2009

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

Linda and I went skiing yesterday at Copper.  It was a pleasant day with temperatures in the 30’s and the sun peeking out now and then.  I was pleased that my endurance was better than the last time we went, though we only skied about 2.5 hours.  I pushed myself a little bit by doing Rosie’s Run (a black diamond run) at the end.

March 25, 2009

Linda and I met with an SSDI representative today.  The meeting went fairly smoothly.  My claim is being forwarded to Denver for further review.  We were told that it would take 5-6 months to get a response.  The good news is that, if approved, I will receive benefits retroactive to either August of last year, when I stopped working, or to whatever date they determine I became disabled.  I will qualify for Medicare two years from the agreed upon start date.

March 31, 2009

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.
  • 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.

April 8, 2009

I really need to talk with Kevin and Brian at some point about any fears they may have for themselves or their kids based on my problems.  Unfortunately, I can’t tell them that nothing will happen.  However, there is no history of either PD or any type of dementia in my family.  I am convinced that my problems are a result of “environmental” factors and, therefore, should not have been passed on to them.  

July 17, 2009

We have been in our new home only 10 days, but it seems longer.  It has been very hot the entire time.  Many neighbors have gone out of their way to introduce themselves.  They seem friendly, but also seem to keep their distance.  I expect that will change as we get involved and get to know people better. 

August 4, 2009

I finally got a letter from SSDI and ended up learning that I had been sent a denial letter (which I never received) on 6/23.  The Littleton office sent me a copy so I was able to read their justification.  Of course, I did not agree-it was inaccurate in parts and certainly incomplete.  I hoped the system would work for me, but since it didn’t I decided to make sure I maximize my chances of success in the next step.  Linda went with me to a meeting with an SSDI lawyer last Wednesday in Colorado Springs.  We decided to move forward with her based on her feedback and experience with SSDI appeals.  It may take 3-6 months, but she feels we should be approved. 

September 11, 2009

This date brings back painful memories.  I put out the flag this morning to honor the memory of those who died as well as those who worked heroically to save so many.  I wish our country could pull together like we did following those tragic events.

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.  Lots of good information 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+.

September 29, 2009

I made an appointment at the eye clinic at the hospital due to problems I had been having.  They discovered a few small tears and beginnings (in two places) of retinal detachment in my right eye.  I was there for a few hours and endured lots of bright lights, eye gouging, more bright lights, and about an hour of a laser procedure to do repair work.  I had driven there on my own for the first time in quite a while which was a mistake.  Linda came and picked me up.  When I went out to meet her after it was all over all I could do was cry as it was such an excruciating experience.  However, I am lucky and glad it was caught in time. 

I had contacted Cleveland Clinic and St. Joseph’s Hospital in Phoenix (both top 10 neurology hospitals) after my last appointment with Dr. Kluger to pursue my idea of more testing related to cognition and “second opinion”.  Both responded positively and invited me to make an appointment.  The doctor at St. Joseph’s was a Dr. Lieberman at their Barrow Neurological Institute.  Subsequently, I was talking with my neighbor Lloyd (who has PD) 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.  I talked it over with Linda and we decided to go for it.  The hospital called the morning of September 24 to make an appointment.   I sent a letter to Dr. Lieberman that included the following:

“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 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.

By the way, like you, my faith is important to me.  I rely on God and know He is in control, but believe that He wants me to wrestle with this and be proactive.”

October 27, 2009

We had a great time at Yellowstone, but I had my first clearly “violent dreams” the first night.  I was yelling at someone and was really angry.  I then dreamed about someone trying to take something from me and bit their finger; woke up biting the polypropylene cushion for my CPAP face mask as hard as I could.  Then last night I had more VERY unusual dreams where I saw a dinosaur-type creature very close behind my car in my rear view mirror while driving and later witnessed what appeared to be an explosive crash of a hot air balloon that landed close to me.  I felt unable to move, the flames were closing in on me and I was yelling for help.

November 16, 2009

It is true that tremor is a big quality of life issue for me.  The prospect of having that relieved is energizing and exciting for me.  It has been part of my life for a long time and a source of frustration and embarrassment.  Hard to imagine what it would be like without it, but I would like to find out. 

I feel like I am in a better place emotionally since the Phoenix trip and starting a community PD support group last week.  Also have been doing a fair amount of singing with the church choir and community chorus.  Need to keep up this positive momentum.  All the kids were here last night to have birthday cake and celebrate with me.  It felt good.

November 22, 2009

I woke up and it was about 7 am.  I took my pills and went back to bed and slept until about 7:45 am.  During that 45 minutes, I was having thoughts I wanted to put on paper.  It occurred to me that life on earth is part of a continuum.  Part of an ongoing journey, with life being just one of the chapters.  It occurred to me that there may be a series of things like being humans that we go through on the path to enlightenment.  That’s the best way I can describe the final destination.  I have learned about that concept by reading Wayne Dyer.  It is a key part of eastern religions.  It seems like maybe there were things before this life and there will be things after on this journey.  My intuition of our role in the universe is that we are a form of energy.  Perhaps we are in training for some purpose He has in mind.  It was a freeing, reassuring concept for me to think that human life and death are a small part of an eternity-long process.  Perhaps this journey is different for each of us in some ways.  Perhaps we take shape as some other form of matter on another world or in our universe or perhaps even in another universe or place or form of existence we can’t even imagine.  Perhaps we keep taking different roles according to His plan, but eventually in an enlightened condition.  Or perhaps there is a special role we play when we reach enlightenment.  Perhaps only some of us reach enlightenment, but my sense is that we all have the potential to reach it.

I feel like I have been only semi-awake as I have written this.  It will be interesting to read it at another time and see what I make of it.

December 3, 2009

Just read the previous section.  Very interesting actually, if somewhat “Twilight Zone-ish”.

Once again a lot of time has passed since my last (coherent) entry.  The meeting with Dr. Kluger went well.  He was interested that I had completed the memoir.  He surprised me by saying he thought it would be a good idea to do another neuropsych now (I was able to schedule this with Dr. Hoyt for 12/18) so we could get a new baseline and decide if I should go back on Aricept.  Another factor is that I would need an updated neuropsych as part of the DBS screening process.

I gave the boys my memoir on Thanksgiving.  They were surprised and seemed moved that I would do that for them.  I hope they enjoy reading it.  I am glad to have that project completed.  I don’t have a formal “bucket list”, but if I did that would have been on it. 

The good news is that I got a call today from our lawyer’s office today telling me that they had heard that SSDI wants to approve me without a hearing.  She didn’t know yet what the effective date would be.  She is working out the details with them and hopefully will get back to us soon.  It will be a huge relief to have this resolved.

The PD support group I started is challenging but I am glad I did it.  We have a good group already, but some are going through tough times.  One gentleman who hasn’t actually been able to attend yet looks like he will pass away soon due to cancer (which he has on top of PD).  Another man has had PD 20 years and is running out of options.  I have spent time at his house listening to his music-he used to be a marvelous singer.  Another lady in our group is taking him to his adult daycare on Friday as she does volunteer work there.

February 16, 2010

Linda and I met with Dr. Hoyt on 2/1 to go over December neuropsych results and answer questions.  The primary purpose of doing this again now is to start DBS qualification process.  The results showed improvement in a number of results and no apparent deterioration.  Dr. Hoyt was clear that he no longer felt I was in danger regarding MCI or dementia based on the results.  There are clearly still issues, but perhaps they are “normal” with PD.  Will try to put my concerns on the back burner.

I am excited about the prospect of DBS and the improvement it is likely to make in my quality of life.  I am still not sure when Medicare kicks in or when I will be able to have the surgery if I am approved, but it sounds like they would like to do it later this year.  I am concerned about the possibility (according to Dr. Lieberman) that I may not be able to sing after DBS.

April 19, 2010

We had my first DBS evaluation appointment at the hospital today including a new brain MRI.  We go back tomorrow for more meetings and discussions.  I am told that I am a good candidate for the procedure to deal with tremor symptoms.  Complicating matters is the fact that it is difficult to discern what tremor is caused by ET vs. PD.  There are separate procedures for both.  The good news is that it could dramatically improve my quality of life for 10 years or more. 

May 12, 2010

I was approved by UCH for the DBS procedure that targets tremor.  We have learned through a broker that, with a typical supplemental policy, DBS would not cost us anything under Medicare.  We are still trying to sort out what we would have to pay with Cigna.  Right now it looks most likely that I will be waiting until next March.  Perhaps that is best.

Meanwhile, we learned about an interesting PD database development project being sponsored by NIH and NINDS in Bethesda, MD.  I called and talked to the coordinator, had UCH send my records, and am tentatively booked for July 13.  They would fly Linda and me in the day before, go through various types of testing for 1.5 days, and return on July 14.  This will give me a chance to learn more about my situation and contribute to learning for the “greater good”.

July 19, 2010

We just got back from our trip to Bethesda to be examined at NIH with the goal of contributing to the “greater good”.  We were there Tuesday from about 8 am until 2 pm.  I had blood drawn so that they could test for a particular gene that they have found that they think is predictive of PD.  It is rare, but if I do have it, they will want to work with me more for sure.  I met with a movement specialist for about three hours and reviewed the paperwork I had completed.  He did answer many of our questions and made recommendations that were helpful (recommended DBS and ET target and suggested taking sinemet more frequently plus switching from CR to regular sinemet at night to eliminate, hopefully, RLS).  Discussed peripheral neuropathy “diagnosis”-recommended testing to determine for sure if I have this and come up with plan.  Found minor stiffness (level 1) in right wrist but not in left.  Concerned about balance and gait issues and recommending PT.  Asked if I would like to participate in two research studies after lunch, which I did.  Before lunch, took scratch and sniff smell test-didn’t recognize many at all.  After lunch, I was videotaped doing routine tests.  Also took a mini-mental state exam and did well except verbal memory delayed recall of 5 words (only remembered 2, plus 2 more with hints).  First research test was a mechanical device that was developed to measure the stiffness in people’s wrists.  Second was a video game type of activity that tested visiospatial memory.  It involved watching a particular sequence of turns and then reproducing them.  Once I figured out I could just memorize “left, right, left, left, etc.” it was easy.  I am sure that it would be difficult for others with more advanced cognition problems.

August 20, 2010

I bought a karaoke machine on Craigslist.  It allows me to record on tape over a CD karaoke background (obtained mostly from iTunes).  I have been spent at least 12 hours taping 20+ songs in the last week or so.  Linda understands that I have a sense of urgency because of uncertainty about what will happen with my voice after DBS.  Besides that, I just enjoy it.  I don’t kid myself that I am a professional, but it is as close as I will come to being a rock star (I think many of us have fantasies about that).  Also, all of my past solo work has been traditional church/wedding/Christmas stuff.  It is really cool to pick out songs that are meaningful to me (oldies, Linda’s favorites, and more current stuff that I really like).  So all the songs have personal meaning, but the ones that resonate most are the themes from Secret Garden, Lord of the Rings, and Never Ending Story.

October 10, 2010

I wrote this email today to my science teacher son:

Bri-

I thought you might be interested in some of the information from last Friday's DBS support group meeting.  The speaker was my doctor at UCH, Benzi Kluger (movement disorders and cognition/depression neurology specialist).  His topic non-motor issues with PD which include depression, anxiety, apathy, moodiness, speech, executive skills/working memory.

He drew a picture of the brain and talked about problems that involve the basal ganglia, frontal lobe, subthalamic nucleus and the thalamus.  The normal "communication" between these brain parts can be affected by dopamine (neurotransmitter) deficiency, damage to cells in one or more of these areas (caused by lewy bodies-sticky protein substance that is a hallmark, in different forms, of PD, AZ, LBD, FTD, etc.)  He mentioned a relatively new theory about problems starting in the gut and moving up the spinal cord over the course of 10-15 years before PD symptoms are evident.

He talked about 3 categories of problems involving the frontal lobe.  One was apathy/motivation.  He said that caregivers need to understand that this is a cognitive symptom and should not be confused with laziness.  He said that exercise and structure/routine can help with this, as well as nutrition and medication.  Another problem is the "tip of the tongue" issue where words/names that are normally readily available either take extra time or can't be retrieved in a reasonable amount of time (this happens to me a lot).  The frontal lobe is the tool that is supposed to extract information from the hippocampus.  Fluency can also be a problem, so that speaking becomes choppy and doesn't flow normally.  In PD problems with the frontal lobe cause these problems.  By contrast, in AZ, the info never gets into the hippocampus.  In PD, it is there, but there are problems with retrieval.  Stressful situations amplify this and other problems in PD.  The third area is working memory (one of the four categories of memory).  For example, a typical person is able to store 5 words in short-term memory, perform a variety of tasks, and remember the 5 words.  This summer I was able to remember 3 of the 5 and one more when given clues. 

He talked about two clinical studies he has coming up to study executive skills and working memory in PD patients pre and post-DBS.  I think he said he plans to work with DBS patients whose procedure has targeted the STN.  I plan to investigate this with him.  I had also been asked to participate in a study he is doing on the impact of acupuncture on fatigue in PD patients.

He also talked about how multi-tasking is a problem and that working on more than one thing at a time can be frustrating.  I found recently that I had trouble singing and clapping at the same time (for example).

There was more, but that is what I can remember at the moment.

Love,

Dad

December 15, 2010

All the medicare stuff is in place now and my DBS has been scheduled for March 14, 21, and 28.  I have had my first 3 acupuncture appointments.  I felt less tired after the first, but no noticeable difference since then.  They are very interested in tracking the impact on cognition/mood as well as fatigue.  I will be interested to see how it turns out.

I am excited about DBS now that it is taking shape but also somewhat anxious.  I know the procedure will not be fun.  I hope the outcome is worth it.  I am encouraged that this version has such good results according to what we here.  Hopefully there will not be troublesome side effects.  I know it won’t help with anything but tremor, although I am hoping that cutting out propanalol will help with fatigue.  Don’t know if I will be able to cut back on other meds.

February 5, 2011

Only three more days until we leave for our much-anticipated trip to Costa Rica thanks to Jack and Marcia.  I am excited, but also increasingly concerned.

My concern is a result of a sense of my “mind problems” getting worse.  I really am in a fog from a memory standpoint in many ways.  I can’t begin to recall when events have taken place in the past few months and have trouble remembering things we have planned (with the exception of things I have spent a lot of time with like our CR trip, mom’s birthday, and my DBS surgery).  When we went on our recent trip to AZ, I left my wallet at home.  I have also had situations where I have become confused like in AZ at the restaurant.  We went to a place where we looked at a menu on the wall and gave our order.  I was first in line and was confused about what to order.  I had been there before and knew how it works.  But this time I was first in line and Linda was not with me as she had chosen to order something that put her in a different line.  So I got confused and then panicked because she wasn’t there to help me.  There were a bunch of people behind me in line which added to the stress.  I ended up ordering something I didn’t want (because I thought I was supposed to) in addition to what I DID want.  It should have been clear to me from the verbiage on the wall plus previous experience (which didn’t enter my memory at all at the time).  Once I realized I had made this mistake, I was embarrassed and upset and it came out as anger at Linda for not being there for me.  Of course, this was silly and child-like, but this kind of thing happens sometimes these days.

I have also been aware for a while now that I usually have no recollection of my dreams unless it is something particularly scary.  It is hard to describe, but I feel like I go to a dark place that is sometimes scary.  Almost like I have gone to another world or “parallel plane” unlike my dreams in past years.  I have had vivid and sometimes scary dreams since mid-2008 for sure, but this feeling of entering a dark void is more recent.  Recently I have begun to wonder if I will end up in this place full-time.

When I speak with other patients and the subject of memory loss and dementia come up, there is universal fear.  I couldn’t help but draw an analogy this morning while watching a program I had recorded called “Planet Earth” regarding earth’s shallow seas.  On an island south of Africa, there is place where King penguins and elephant seals spend part of the year.  Recently, seals have developed a taste for the penguins and kill them (one out of three is killed) as they come ashore to feed their young.  In southern Africa, there is a beach where seals live due to abundant supplies of food in the sea.  In order to get to their hunting grounds, they are forced to cross a narrow strip of water where 1-ton great white sharks lie in wait.  I continue to remind myself that the data tells us that 20-40% of PD patients develop one of the dementias.  In my presentations on cognition to support groups, when I give them this info (which I think they deserve to know), I point out that this means 60-80% of us WON’T develop dementia.  While this is some source of comfort, I can’t help but feel a little like one of those penguins coming ashore or seals heading out to their fishing grounds.  DO I FEEL LUCKY?  I would really like to, but I don’t.  I am told that, in this way, I may be increasing the chances of this happening.  That if I stay positive, it will help.  So let me be clear-I am not giving up.  Anyone who observes what I am doing with my life knows that.  I will continue to try to make the best use of the skills and talents I have with God’s help.  But if it ever gets to the point where I don’t have anything left to give and can no longer function or know my loved ones, I don’t want to be housed in an institution where I am only a burden.  I would not want that.

May 28, 2011

I have had 3 programming sessions and will have a fourth this week.  The first was during the time I was coming off inderal, so that didn’t work so well.  Since then I have made steady improvement.  Have had to be patient and not “oversteer” by adjusting every time a tremor pops up.  I have learned that if I have the settings too high, I have difficulty speaking.  Julie set me up with 4 programmable channels that I can adjust up and down in.  Lately I have been reducing power most of the time so that it is comfortable to speak.  I have been in the C channel for quite a while now and am pretty comfortable.  Took the left side up one notch today.  Not sure which side impacts speech (just looked on the internet and it is the left).  I am concerned that my singing ability has deteriorated, but not sure to what degree and what are the causes.  I know breath support is a problem-I run out of breath quickly just talking.  I did buy a singing therapy CD Kate recommended and have worked with that.  Need to give it time and not jump to conclusions.

I have been absorbed with finishing the Carson book and investigating publishing options for weeks now.  I was close to the end of my rope when I found Innovo Publishing, a small, family-owned Christian publisher in TN.  They are actually now considering publishing the book themselves.  We’ll see what happens next week.  It has turned into more of a project than I thought.  Have settled on Alison Paolini, a PD patient in California that I got a lead on from Cheryl Siefert (PAR), for illustrations and I like her work.

September 28, 2011

I have been absorbed in my Carson book project.  I signed a contract with Innovo in mid-July and we are about to print.  So much has happened.  Vacation, meetings, research studies, support from so many PD organizations, endorsements.  Lots of other things in the works.

I must be crazy working so hard to make $1/book of which I will only keep $.54.  I have to keep telling myself that I am not doing it for the money, but to get the book in as many PD hands as possible where it may be of benefit.  With all the support it is getting, it may end up doing well.  A sequel is already on the drawing boards assuming the Carson book is a success.  I have other ideas for a third and fourth book that are starting to take shape.

I am 99% convinced that I either have dementia or am on the brink.  Much of my thinking is still intact, but my planning, scheduling, complex problem solving and memory issues sure sound like either lewy body dementia or Parkinson dementia (both part of the lewy body family).  Either way it is not good news.

April 20, 2012

I just read my last entry from late September of last year.  So much has happened and yet so much has not changed.  The book was published and has been very well received based on the response of people who have been made aware of it and understand what it is about, or those who have bought it. 

Share this article:

Continue reading
196 Hits