What has Paul been doing this summer?

2018 thus far

I was expecting this year to be a whole lot better for me than what has happened.  The reason is because of the odd decade phenomenon, that I have noticed over the years.  In my 30^th decade of life I divorced from my first marriage – not a good thing.  In my 50^th decade of life I was diagnosed with Parkinson’s disease.  So, this being an even decade I was not expecting any big life changing negative events.

But …

In February my neurologist did not raise my medication for my PD symptoms.  I was expecting to get an increase in my medication since my off-time was starting to increase and I was having trouble sleeping through the night.  For those of you who do not know what off-time means it is when my medication wears off between medication dosages and my PD symptoms begin to show.  When this has happened in the past the neurologist always raised the dosage.

In April Vicki and I took the Motorhome down to Orlando to meet with the family to see Universal and do some Magic Kingdom.   We stayed at a Holiday Inn resort.  I was having sleeping problems and some off-time but was still functional.

After Orlando, Vicki and I took off in the Motorhome to west Florida.  During that time things got worse.  It became harder and harder to fall asleep because tremors from Parkinson’s was showing up at bed time.  I would also wake up early between 4 & 6 am and not being able to go back to sleep.  When the off time became long enough, I would get to the point of not being able to sit still.  So, I would pace in the motor home.  I would sometimes go outside to walk, but my dystonia (curling of the muscles) in my left foot would appear, keeping me from walking.  I would get stuck in certain places because I could not move my feet.  One morning I had 10,000 steps by 6am.  None of this had ever happened before.  Both Vicki and I were very confused.

This became bad enough that Vicki and I decided to head home.  It took a while to get there because I could not travel very long because of the off time and me not being able to set when that happened.

Trying to figure out what is happening

We sent a message off to our neurologist trying to explain what was going on, but we had trouble doing that.  We also asked for an increase in medication to get rid of the off times, but he refused.  We followed up asking why but never heard back.

Finally, I decided to get things under control.  The basic problem was I would take my pills (CL) and it might be hours before it took effect.  During that time, my symptoms would get worse and worse.  I had never seen this problem before.  After thinking about this for a while I remembered a few things my neurologist had told me and had basically ignored because it had never happened:

·      If you have just taken a pill (CL), wait a ½ hour before eating any protein.

·      If you just a protein the wait 2-3 hours before taking medication.

My pill taking cycle was basically 2 CL every 3.5 hours.  This means I have a small window to eat protein before my next time to take a pill.

I had never had this problem before.  I was eating what I wanted when I wanted, ignoring where I was in the cycle. I might eat a hamburger and fries just before taking my pills.  Based on the above, that would mean when I took the pills, they would have little or no effect.  My off time would then extend for 3.5 more hours when I would take my next pills.  I also figured out that eating something like a hamburger might take upwards of 5-6 hours to digest.  This means if I take a pill, wait the ½ hour for the pill to take effect, then eat a hamburger, the next set of pills would be delayed and diminished because the hamburger would be digesting.  This led me to my mantra:

1.   Keep my pill schedule of taking pills every 3.5 hours.

2.   My stomach should be empty when I take pills

3.   I will eat as soon after my pills take effect as possible.  This helps to assure that the pills will fully take effect and that my stomach will have time to digest the food before I take my next pills.

a.   If stomach is empty it will be 40 minutes.  The 40 minutes comes from the fact that when I wake up in the morning my stomach is empty and about 40 minutes after I take my pills off time is over.

b.   If not empty the time will be greater than 40 minutes.

I started to incorporate this into my schedule.  In the beginning I cut way back on what I ate and proceeded to lose about 8 pounds in a month.  I then started to experiment with what I ate to see how much of a delay it caused when I took my next set of pills.

Language to discuss what is happening

I would like to setup a mathematical like language to discuss what is happening. 

pills	Carbidopa-Levo(CL).  Carbidopa-Levo+Entacapone (CLE)
Ax	the clock time at which I take my pills.  Ax+1=the time of the next pill.  If I take the pills(CL) at 6 am (A1) and take my next pills at 9:30 am(A2) (CLE) then the time between pills is A2-A1 = 3.5 hours.
Ax+1-Ax	3.5 hours:  The time between pills
Delx	the time it takes for the medication to take affect after taking Ax.  Best case: 40 minutes, which is what it takes after 6am pills (CL) and no food in my stomach.
Ax+Delx	the clock time my medication has taken affect and I can now eat.  A2-A1 = 3.5 hours or 210 minutes.  The best case is Delx = 40 minutes.  So, if I start eating at A1+Del1, I have 170 minutes to eat and have it digested to minimize the amount downtime around Ax+1.
Ex	The clock time I actually eat after taking Ax.  Ex >= Ax+Delx
Cx	the time it takes to digest food.  Ideally, it would be Ex+Cx<=Ax+1
Dx	the start of downtime after Ax takes effect
DTx	the length of downtime.  The longer the downtime the worse the symptoms.

The goal is to eat just enough food between pills such that E_x+ C_x = A_x+1 and thus Del_x+1 is 40 minutes.  On the other side, I need to eat enough food during a day to maintain my health and weight.

Here is an example day (10/9/2018).

A1	6 am CL
Del1	35 minutes
A1+Del1	6:35 am – I should be able to eat something without affecting the medication for A1
E1	6:40 am – I eat my morning meal.  It has 170 minutes to digest.
C1	It is hard to gather this information; however, I put it here to make it easier to understand
D1	8:40 am
Dt1	90 minutes
A2	9:30 am CLE
Del2	40 minutes.  Ate the right amount of food at E1(6:40am).
A2+Del2	10:10 am
E2	10:10 am – It has 170 minutes to digest before A3
D2	12:15 pm
Dt2	105 minutes
A3	1 pm CL
Del3	60 minutes – an extra 20 minutes of downtime
A3+Del3	2 pm
E3	2:05 pm – 145 minutes to digest before A4
D3	4 pm
Dt3	105 minutes
A4	4:30 pm CLE
Del4	105 minutes – an extra 85 minutes of downtime
A4+Del4	6:15 pm
E4	6:20 pm – 100 minutes to digest before A5
D4	7:45 pm
Dt4	85 minutes

An example while on vacation:

If I had a hamburger and fries at 12 pm.  This is an hour before my next pill.  I took my last pills at 9:30am (A₂) so this meal was D₂.  A hamburger has two problems:

1.   It is a lot of protein

2.   it takes a long time to digest.

After 6 hours I am still digesting it and the fries, I can tell this because I am not hungry.  This is what I think happened:

1.   E₂ = 12pm - I eat the hamburger and fries.

2.   D₂ = 12pm - The downtime is beginning

3.   C₂ = 6 hours - The time it takes to digest a hamburger and french fries.

4.   A3 = 1pm - take 1pm pills

5.   1:30pm = D₂ is continuing.   By now, I cannot sit still and have to get up and walk around.

6.   A₄ = 4:30pm - take 4:30pm pills.  D₂ is still continuing - still walking around.

7.   6pm = D₂ is starting to subside but the medication from A3 does not have a lot affect because of the protein.  But A₄ should be taking affect.  DT₂ = 6 hours

8.   6:30pm - I am starting to get hungry,

9.   7pm - I eat another meal that takes several hours to digest. E₄ = 7pm

10.                 730pm - D₄ - downtime begins as A₄ starts wearing off.

11.                 8pm - A₅ take pills - DT₄ continues - starting to pace again

12.                 11pm - A6 take my nighttime pills.  DT₄ continues.  I attempt to go to sleep.  Since, DT₄ is continuing I cannot get my legs to hold still and thus have to get up and pace some more.  It may be 12am before I can finally get to sleep.

Where I can use some help:

I have decided to try and predict when my medication will be delayed based on when and what I ate.  I have 5 “independent” variables:

·      Time of day

·      Fat (grams)

·      Net Carbs (grams)

·      Fiber (grams)

·      Protein (grams)

·      Time to next pill

And one dependent variable:  Amount of delay.

I have gathered information for about a month.  I tried doing multiple regression, but the numbers seem to say linear regression the answer.  What I would like to know is what should I try next or did I do the multiple regression right.