Parkinson’s thoughts

March 30, 2008

This is my private place to write about my thoughts.  I just read:

One of the things that is happening to your wife is that she is losing her EPA (Executive Planning Ability). This is not uncommon in PD and one of the things that drives caregivers up the wall. It is becoming harder for her to formulate, initiate and complete actions.

Unfortunately, that is the concept I needed.


Cognitive symptoms in PD include the following:

  • Loss of decision-making ability
  • Inflexibility in adapting to changes
  • Disorientation in familiar surroundings
  • Problems learning new material
  • Difficulty concentrating
  • Loss of short- and long-term memory
  • Difficulty putting a sequence of events in correct order
  • Problems using complex language and comprehending others’ complex language

a new world

March 8, 2008

Yesterday a neurologist said to my husband: “You definitely have Parkinson’s”

The last six months I’ve been pushing my husband to grow with me, particularly spiritually but on any deep level. Now I feel I have to give up on that and look for other people to be my companions on that road (two have already come into my life recently). Maybe my husband will be one of those people who becomes deeper because of illness, I am certainly going to keep the door open, but I’m also not going to wait for him now. What I see now as my greatest task in my relationship with him is to get out of seeing emotional partnership versus taking care of him as an either/or choice. At this point he is just slowed down, but that does limit how much he gets done. And he needs my help communicating with doctors.


January 17, 2008

I am going to write a very blunt description of my experience of a colonoscopy, focused on my issues as a survivor of sexual abuse.  This is for people who want the details.

 I went to a new doctor and she asked me about what screening I had done.  Yes, I have regular mammograms.  No, I did not have the recommended colonoscopy screening for colon cancer at age 50.  I explained I felt that I couldn’t handle the prep because giving myself an enema would be too closely connected to memories of childhood sexual abuse.  She said that she thought it was possible to prepare by taking laxatives only, no enema.  Her husband had had a colonoscopy and she didn’t think he had had to do an enema.  So I said make me an appointment with the doctor you recommend and I will discuss whether it can be done in a way I can handle.  The doctor was a general surgeon who does the procedure at the hospital (every Thursday), not the more common gastroenterologist who does the procedures in their office.

My first impression of the doctor was negative, because the office was filled with posters for weight loss surgery (it is a general and laparoscopic surgery practice).  Interestingly, when the nurse took me to an examining room she started to tell me to step on the scale and then said just tell me what you weigh.  That seemed like a good sign.  She took my blood pressure almost immediately and when it was on the high end of normal I said that was pretty good for how anxious I was.  She started to say that there was nothing to worry about, but I think she did ask me why I was anxious.  I said I was a survivor of sexual abuse.  She reassured me that the doctor would listen to my concerns.

She apparently told the doctor.  He asked me about my concerns (without referring directly to sexual abuse) and I said I couldn’t handle doing an enema.  He said that wouldn’t be necessary.  I was also concerned that the laxatives would be too strong, as the only other time I was cleared out for a procedure I almost passed out from the pain of the cramps.  He said that I could stop taking the laxatives when what came out of me looked just like what went in me (in other words, clear fluid).  I was concerned about high blood sugar during the day of clear fluids only, when I would be drinking juice, and he said that one day of high blood glucose wasn’t something to be concerned about.  But he seemed tolerant rather than hostile towards my interest in very carefully managing my blood  glucose. 

I also asked him carefully about the anaesthesia.  It is a form of deep sedation, not a general anaesthesia, but he assured me that when I woke up it would be as if no time had passed.  He said they use a newer medication, Diprivan, where you feel energetic and a little high the rest of the day rather than wiped out.  I was concerned because my daughter woke up crying from the sedation to have her wisdom teeth removed but he said that effect (called the Versed blues) is not seen with this other medication.  I’ve since learned that some insurers are refusing to cover this medication for colonoscopies because it is more expensive than the lighter sedation sometimes used.  For a strong argument that is it the way to go see Counting Sheep.

When the nurse came back in to go over the prep sheet with me, she had a standardized sheet that included an enema.  I said the doctor told me I didn’t have to do that.  She went out and checked with him and came back and said that is correct.  I crossed it out on the sheet before I signed it and she made a copy of what I signed.  Because of the holidays I scheduled the procedure for almost a month later.

The prep started with nothing but clear liquids for the whole day before the procedure.  I drank about two cups of white grape or apple juice every three hours and that was not quite enough to keep my blood glucose where I wanted it (95-110).   I took a 50 minute run in the early morning and taught my class in the late morning but I went home in the early afternoon and took it easy the rest of the day.  By keeping my blood glucose fairly level I didn’t feel horribly hungry, but it felt strange not to eat.

At 3 pm I took two laxative tablets (Dulcolax).  I felt a little nauseous but nothing happened until I started the next part.  At 5 pm I mixed an entire 255 g bottle of Miralax powder into a 64 oz bottle.  I was supposed to mix it with straight Gatorade but to cut the sugar I mixed it with 32 oz. of Gatorade and the rest water.  The pharmacist had told me to use full-strength Gatorade because I needed the electrolytes (and the sugar wouldn’t have a chance to be absorbed).  I think I made the right choice.  I measured my blood glucose several times and the highest it hit was 118.  I didn’t feel the process was pulling fluid out of me, only that the fluid was passing through me.

 The dissolved salts had no smell but a strong effect on the bitter sensors on the tongue, so it was unpleasant to drink 64 ounces of the stuff at the rate of a cup every 15 minutes.   After half an hour or so it began to take effect, first some runny stuff, once some fairly normal solid stuff, and then just fluid.  I may have spent 45 minutes or so mostly in the bathroom, but I had no cramps.  I expected it to be like a bad case of diarrhoea but it was not so bad–no cramps, not that nasty acid stuff, and I didn’t feel sick.  I stayed close to the bathroom the whole evening, but I never felt I might not make it there.   By 8 pm I was passing clear fluid and the frequency of visits to the toilet was going down, so I decided not to take the 2 additional Dulcolax tablets the instructions called for.  The doctor had said that if I was not prone to constipation I probably would not need all of the prep and the pharmacist said that if I got to the point where I was passing clear fluid and a little sandy stuff in the bottom of the toilet bowl I was done.

I slept surprisingly well.  I didn’t have to get up to go to the bathroom more than I usually do, and hunger didn’t keep me awake (which sometimes happens to me).  I woke up early and anxious, partly because we had snow overnight and it was supposed to turn to freezing rain.  What I found when I went out was just slush, so my husband and I headed to the hospital (with me driving, as I grew up in the north driving on snow and he grew up in Texas).  My appointment was for 7 am.

I was taken to a cubicle with a curtain and a rolling bed where I put on a cloth gown open in the back.  I was told I could keep on my socks.  I asked if I should take off my bra and I was told I could keep it on.   The anaesthesiologist came in to talk to me and I discussed two things with him.  I told him I was a survivor of sexual abuse and I was a little worried I might panic.  I said if I did the best thing was to have my husband comfort me.  I said I was worried after seeing my daughter crying after oral surgery and he said that happens to one of 10 people with Versed but he didn’t expect a problem with the drug I would get because you wake up alert, not groggy and confused.  I also told him that it can be hard to start an IV in me.  The nurse said she would start it before he left in case there was a problem, but she got it the first try.

 Quite quickly a nurse wheeled me into the procedure room, but then there was a long wait for the doctor to come.  I was hooked up to an automatic blood pressure cuff, three heart sensors stuck to my chest, and a thing around my finger to measure my pulse and oxygen saturation.  I watched the monitor for a while–there were three traces and I couldn’t figure out what the middle one was.  Then I proved it was charting my respiration by holding my breath.  I tried watch the trace to make my breath even, but I realized I was breathing deeper than I needed.   I had brought with me an iPod of soothing music, with earbuds, and they let me keep it on the whole time.  They were going to let me keep my glasses on until the doctor came in, but then someone else took them off just before he arrived.

I was quietly listening to music when the nurse-anesthetist came back in.  He told me that the medication would burn going into my arm.  It did–I said yow, it burns and I have a strong metal taste in my mouth.  The next thing I knew I opened my eyes and said “is it over?”  The nurse in the recovery room asked me what I wanted to drink (I had orange juice and then milk).  The doctor came in and reported that I was all clear, just have it done again in 5 to 10 years.  I asked about polyps and he said none.  He had told me I wouldn’t remember what happened in the recovery room but I do.  I didn’t feel sleepy but I wouldn’t say I was alert–I felt as if there was a wall of cotton between me and the world.  After a little while I got dressed.  I asked for something to clean myself with before I got dressed–I wasn’t dirty but wanted to wipe myself.  I was given a warm wet washcloth and towel, which was nice.  I felt ok getting dressed, but I was glad that someone pushed me in a wheelchair to the hospital entrance.  We left about 9 am.  My husband and I stopped for breakfast and I ate a big breakfast.

I’m taking it easy today–the instructions said do not drive (or cook) for 24 hours after the anaesthesia.  The idea is it leaves your judgement impaired, though I don’t notice that.  I did drive a short distance to pick up something at the postoffice and felt fine, but my body does want rest.  I feel absolutely no soreness from the procedure–I have only a theoretical knowledge of what was done to me, nothing in my body to indicate it.  I do have the world’s worst stomach rumblings as food hits my system again.  I’m passing gas and little bits of fluid, not frequently but enough to make me want to stay near a bathroom.  I’m eating normally, but then I have a cast iron stomach.

The experience was overall much less difficult than I expected.

 Update: I feel very depressed the next morning.  I’ve been researching the medication but can’t tell if it is a side effect.  I’ve edited in links to what I learned about the medication.

Borderline Personality

November 21, 2007

My therapist recommended Understanding the Borderline Mother: Helping Her Children Transcend the Intense, Unpredictable, and Volatile Relationship, by Christine Ann Lawson, because he found it useful himself. I did like the analysis of how to deal with a toxic mother. But it had the same problem I usually have with books about Borderline Personality Disorder–I identify with too much of it and then it defines those problems as almost impossible to heal. I suppose my analysis would be that most of what is written about BPD doesn’t separate between a person who is toxic or clueless enough to do a lot of harm without realizing it and those of us who struggle with the same patterns but try to avoid doing harm. And if one is aware enough to want to heal then it is possible; maybe a long process but not one where it is hard to get anywhere.

survivor resources

November 4, 2007

Years ago, I was very active in groups on the internet for survivors of sexual abuse.  But in recent years I have pretty much fallen out of the survivor world, gone on to other things.  I do still have several friends I made there, in fact three of us once showed up at a retreat on “Befriending your shadow.”  Last spring I decided to participate in a book about survivors (for which I wrote the circles piece).  That and several other experiences have reminded me of the importance of sharing my story so that we all might feel less alone, which is why I created this more anonymous blog.

I just got a notice that my membership had expired in a group I think highly of, and so I renewed my membership.  The group is for survivors of mother-daughter sexual abuse, and the introductory pages can be found at:


October 22, 2007

This is a piece I wrote for a book of stories by survivors of sexual abuse.  It has previously been published on the web here:


There are circles within circles within circles in the healing journey.  The first circle is listening, finding some way to give voice to what is hidden inside.  I painted pictures of myself with wounds on my body, trying to make visible how wounded I felt inside.  I found a therapist who would see but not try to fix me, who would trust that the things inside would come out when they were ready.  I made hearts out of cloth and then a box with decorated drawers, finding different ways to express the parts of me I had previously refused to acknowledge.  Thbox1.jpgbox1.jpge drawer in the upper left corner of the box was lined in yellow silk and contained seven smooth white stones; that drawer represented God.  I’m more a scientist than an artist but it felt like the way to heal was to work through my weak side, my artistic and intuitive side, rather than through rational analysis.


The next circle for me was remembering.  I remembered the easier memories first.  I always remembered my step-grandfather groping me, though I didn’t understand it was serious.  In my family you went on no matter what happened, and I went on pretty successfully in the academic world, where I felt safe.  It was only after I had my own children and my son had bladder surgery that I started listening to the pain inside me and found a therapist who would see and went deeper.  Then I remembered my grandmother (my mother’s mother) using me sexually, teaching me how to satisfy her, particularly when I was 4 or 5 but continuing almost to adolescence.  She liked to hurt me.  I worked with that a long time, learning to bear the pain of the memories, before I remembered my mother touching and using me sexually, from very early until she remarried when I was five.

I’ve been able to heal and function at the same time, by going slowly and trusting what is inside me.  My therapist didn’t push.  I tried not to look ahead, but to let the memories come when the time was right.  One time I started telling my therapist how I didn’t want to heal, it was too hard to learn to live in a different world.  He said “I will stay with you wherever you are.”

The second circle for me was learning to love.  I spent a long time getting to know what I had cut off inside me.  I kept being a responsible adult in my job and with my kids, but I made time also for the needy child inside me.  I went to the zoo, without my husband and kids, trying to listen to what the child in me wanted.  I bought myself stuffed animals, and slept with one.  I said I didn’t want to leave any part of me behind, rejected, alone and in pain.  When I could love the wounded parts of me, then they didn’t have to be so separate.  My therapist said it was ok to be needy; that when those needs had been met enough then I would want to grow up.

There was for me a whole circle of grief.  My father had died in an automobile accident when I was not quite three, and no one gave me a chance to feel my grief.  I needed a role model of how to feel grief, how to listen to those feelings instead of pushing them aside.  I re-experienced how abandoned I felt as a child and how I felt he must have abandoned me because I was bad.  To understand more concretely that it had not been my fault, I wrote away for a copy of my father’s death certificate and found out that the driver of the car that hit him went to jail.

The fourth circle for me was learning to stand up for myself.  Two things helped me particularly with that.  One was being diagnosed with diabetes, because the approach I decided to take was to test my blood sugar often and find out what combination of food and exercise worked for me.  I liked a phrase I ran into on the internet: “My body, my science experiment.”  Managing my blood sugar led me also to become an athlete for the first time in my life (I do triathlons now) and to discovering that I could enjoy sports even if I wasn’t good at them.  I developed a way of managing my diabetes using diet and exercise that my doctor found surprising but that worked well for me.  The other key experience came when my wonderful therapist retired well before I was ready to move on.  After a careful search I found another therapist and worked with him for two years before I finally decided he was not right for me.  I realized I knew what worked for me, and he wouldn’t go there with me.  Now I have found another wonderful therapist who is willing to go further with me than I ever thought possible.  I trust my own process and he walks with me as I follow the path that God opens before my feet.

I have entered a fifth circle of coming to face the darkness that I buried inside me.  I have lived my life and raised my children differently, and yet somewhere inside I feel I am like my abusers.  It is hard to bear that those patterns are inside me, even if I don’t act on them.  I still struggle with how to accept that part of me.  Yet I think there is much positive energy there if I can accept it.  For example, sometimes I am afraid to be strong, because I associate being strong with abusers.

It is a long journey, but an exciting one.  I have found already so much more healing than I ever thought possible.  Joy is possible.  We are not alone.

why this blog

October 22, 2007

My main blog is too linked to my professional identity, so this is a place where I can post things where I want to be anonymous.  I don’t have time to bring back my old web site, which can be read on the way back machine by going to: