December 29, 2010

Today's meeting with my neurologist

charter maldriverna

I had my regular quarterly meeting today with Dr. Bahroo, my neurologist, at his office in the Georgetown University Hospital.   I first saw him almost exactly a year ago, just 3 months after my initial diagnosis with PD. At that initial examination, he rated me as a 13 on the United Parkinson's Disease Rating Scale, indicating a mild disability.  Today he rated me as a 7. (The lower the score, the better.) The improvement was due at least in part to my taking and applying the BIG exercise program for people with PD. 

We then discussed some of the supplements and meds being studied and tested for PD.


Dr. Bahroo said that he was going to start suggesting his patients give this a try based on the anecdotal evidence of its efficacy that.he is getting from patients like me.

CDP Choline 

I asked about this because I had come across reports of a study indicating that people taking this supplement were able to reduce their levodopa meds since CDP Choline seems to have the effect of increasing dopamine in the brain.  Here's an excerpt from one of these reports:

"In a 4-week, single-blind study of 74 people with Parkinson's disease, researchers tested whether oral CDP-choline might help levodopa be more effective.5  Researchers divided participants into two groups: one group received their usual levodopa dose, the other received half their usual dose without knowing which dosage they were getting. All the participants took 400 mg of oral CDP-choline 3 times daily.
Even though 50% of the participants were taking only half their usual dose of levodopa, both groups scored equally well on standardized tests designed to evaluate the severity of Parkinson's disease symptoms"

Dr. Bahroo said he was aware of these studies.  But, he said, only a small amount of CDP Choline is needed by the brain and can usually be supplied by a diet that includes green leafy vegetables and/or eggs.


I asked about this because of a report I'd seen of a study at the University of Minnesota's School of Medicine which "found that isradipine, a drug widely used to treat hypertension, rejuvenates stressed-out dopamine neurons to their vigorous younger selves in animal models of the disease" A national clinical trial is now underway to determine if similar results can be found in humans.

Dr.Bahroo was also familiar with this pending study. He saw no problem if I wanted to discuss this with my internist when I have my annual physical in a few months.  I've been taking other blood pressure meds for years with good results.  But I'll talk with my internist about experimenting with a switch to Isradipine to see if it works on keeping my BP under control and does not give me any side effects.

BIG Exercise Program

At Dr. Bahroo's recommendation, I took this program at Georgetown University Hospital's physical therapy facility this summer.  I found it very helpful.

Dr. Bahroo said that since the program' is very intensive, it may not be as suitable for people with later stages of Parkinson.  Also the initial training program, which involves two training sessions a week for four weeks, may be difficult for some people to schedule.

I plan to do a post on this and other exercise programs in the near future.

December 27, 2010

My Parkinson's Week -- Meditation mediates 4 a.m. battle between 5-HTP-generated ideas and need for more sleep

charter maldriverna
 This week pulled together several of the topics mentioned in prior posts. (See baseline posting on December 12 and Week 1 postings on December 19.)

4 a.m. Meditation

Thanks to the incontinence training program, I got up only once during the night every day last week contrasted with the  3 or 4 times each night previously.experienced.  Last week's  break always came sometime between 4 and 5 a.m. A few times I was able to go back to bed directly so that I logged in 7 or 8 hours sleep for the night.  Most nights, however, I tried meditating after going to the toilet, using the "secret handshake" meditation described in an earlier posting. I've found that I enjoy this early morning meditation and I've kept it going longer that my usual meditaions without worrying about the loss of sleep time since I figure the meditation is doing me as much good as sleep would.

The standard advice on dealing with middle-of-the-night awakenings when you can't get back to sleep is to get up and do something else for 15 minutes or more and then return to bed.  Meditation strikes me as a particularly good choice for this. 
Conflict with 5-HTP-generated ideas 

But I've also noted before that 5-HTP often has a bizarre impact on me when I awake  by flooding me with ideas for solving problems or for new undertakings. This conflicts with the meditation effort to clear my mind and concentrate on my breathing.  The first two times I resorted to meditation last week I was able to gently push away the new idea intrusions  and focus on the meditation. But this morning, the new idea flood was at high tide and made my meditation efforts more fragmented. But I kept at it, noting the ideas but then returning to observing my breathing.  I was surprised when I stopped to find that I'd spent almost 90 minutes on this back and forth. I tried returning to the bed and to sleep, but gave up. I wasn't upset by this and instead found myself laughing at the battle midway through the process.
Mellow Christmas

I was exceptionally mellow during this Christmas season.  Some might say "why wouldn't you be mellow when your daughter takes care of all the cooking and you basically just open the door for the guests and take their coats."  But inevitably things happen during the holiday or the build up to it that spark irritation if not anger,  Not this year.

In this era of .peripatetic families, I am unusually blessed by having my son and daughter, my three grandchildren, and my great-granddaughter all living in  the area. And, even better, we all like each other and get along without tensions. So it was a Merry Christmas

And it also was a good week.

An exercise program for incontinence that works! (for me - so far)

charter maldriverna

I am midway through a four-visit exercise therapy program that's given at Georgetown University Hospital for those struggling with incontinence.  It already has worked for me in reducing my prior 3 or 4 pee breaks during the night to one and is beginning to help with the daytime leakage. As I've noted before, I've had incontinence since my 1995 radical prostatectomy and aging and PD have accentuated the problem.

I benefited greatly from GU Hospital's  BIG exercise program specifically designed for those with PD and my exercise therapist suggested i might want to also try the incontinence program. My urologist agreed and  sent a prescription so that it is covered by Medicare.

Much of the program so far focuses on using the Kegel exercise that is often recommended for incontinece. See these links (which are directed at women because they have incontinence issues more frequently than men)

I tried using Kegel exercises in the past without success.  This time, with professional guidance; it's starting to work.

Here's my current exercise program (which no doubt will change as I complete the final two therapy visits)

Kegel Exercise

  • Quickies: Hold for 2 seconds, relax for 5 seconds -- Repeat 10 times
  • Extended:  Hold for 5 seconds, relax for 10 seconds -- Repeat 10 times
Do both (1) lying on side, (2) sitting, (3) standing.  Do both exercises in each of these 3 positions 2 times a day.

Note: Lisa, my therapist, says the relax times are as important, if not more important, than the hold times.

Pelvic Brace Exercise

Once a day, lie on back and "deflate the balloon" (mine's more like a beach ball) by pushing the belly button down toward your spine  without inflating the stomach. Perform this exercise at 50% or less of full effort. Put your fingers on the lower abdomen and feel the stomach going in. Hold for 5 seconds. Do  10-20 times a day

Note: The objective here is to strengthen the lower abdominal muscles to create an internal girdle  to support your bladder and pelvic organs. They are important to use with activities that cause leakage.

I'm not having too much success here, but I suspect that my next two therapy visits will involve other techniques to bolster this exercise.  Stay posted.

Two hours before bedtime exercise

Lay down with your legs above the level of your heart and supported by pillows. While in this position
  • Make circles with your ankles 20 times in each direction 
  • Pump your ankles up and down 20 times.
Note: This exercise is aimed at giving you a better shot at reducing the number of times you get up during the night.  As we age, our veins may become less efficient at pumping fluid from our arms and legs toward our heart while we are upright during the day. Then at night when we lie down, the veins  are better able to pump fluid into our system where it is converted to urine.

Urge Deference Techniques 

During the day when the urge to urinate come on, avoid rushing to the toilet.  For me for starters, Lisa recommended that I try  to wait one to 1 1/2  hours between voidings. When the urge comes on, stop, pause and do a few Kegels rather than race to the toilet. Try to distract yourself.

The idea here is to retrain your mind set away from thinking that you have to find the nearest toilet every time an  urge to urinate surfaces.

Since the morning is when I have the  greatest problem with leakage and urinary urges, Lisa asked about my morning fluid consumption, which clearly is a big part of the problem.  Since my past problems with  insomnia seemed to be linked (at least in my mind) with constipation, I had developed the practice of having two large cups of coffee after breakfast accompanied by a large glass of water to facilitate a morning bowel movement..  When traveling and having more trouble then usual with constipation and insomnia, I would add a diet Pepsi to get things going.  (My hosts in Pokhara, Nepal would always stock a large supple of diet Pepsi when they knew I was coming.)
Lisa pointed out the obvious connection between this morning flood of caffeine and fluids and my urinary problems later in the morning.  Since insomnia and constipation, no longer are a problem, thanks to 5-HTP, I've switched to one large cup of coffee and one small glass of water in the morning. This seems to help.

As I said, I'm just mid-way in this program.  I'll keep you posted as we progress.

If you want to see if a program like this is available in your area, check this link:


December 19, 2010

My Parkinson's Week (1) -- Breakthrough on incontinence!

charter maldriverna
This is the first in what hopefully will be a long line of weekly posting on my life with Parkinson's.  For a base line on where I started from, see the December 12 posting below.

I've decided to break up these projected weekly journals into separate topical posts.  I've found that as I age my always deficient attention span gets shorter and shorter.  I buy books only if they are under 300 pages.  I Netflix movies only if they are 2 hours or less. And I'm more inclined to read short web postings than long ones.

The No. 1 development of the past week was a breakthrough on the incontinence that has been a problem ever since my radical prostatectomy in 1995.  Age and Parkinson's have aggravated the problem.  Of late, I've been getting up 3 or 4 times a night to urinate.

A month ago I started a physical therapy program at Georgetown University Hospital  designed to deal with incontinence.  I'm only midway through the program. I've had two out of four scheduled training sessions. Already I'm seeing good results.

I had a PT session on Monday and was given a new set of Kegel and other exercises and advice on other things I could do to deal with incontinence. Tuesday night, after my first day of following the program, I got up only once during the night.  For the rest of the past week, this pattern continued.  Hallelujah!  Daytime leakage also was lessened.

I'll do a separate posting detailing the exercise program and other advice late this week..

My Parkinson's Week (1) - Constipation, Insomnia and Fluid Intake

charter maldriverna

This week was an example of how constipation, insomnia and fluid intake have an interrelationship that I haven't  figured out. In my past battles with insomnia (see base line posting on 12/12/10), I've always associated the insomnia with a feeling of tightness in the gut accompanied by constipation.  Often when unable to get to sleep, I would get up in the middle of the night and consume great quantities of water and have a bowel movement and then I would be able to get back to sleep. My primary sleep aid during these struggles with insomnia was Tylenol PM.

Last week was an example of  how all of this is interrelated.  As I've noted in other postings, 5-HTP has alleviated the insomnia and the constipation and helped keep my weight under control.  But I"ve wondered if the 5-HTP sleep was as solid as the Tylenol PM sleep.  So I experimented with taking Tylenol PM rather than 5-HTP Wednesday night.  I logged in seven hours of sleep without any pee break.  But, as a result, I also had difficulty with bowel movements for the next few days which rarely happens with 5-HTP.

Another contributing factor here probably was my trying to follow the advice of my PT incontinence therapist who, correctly I'm sure, said that I should try cutting back on my breakfast-time fluid intake (two cups of coffee accompanied by a large tumbler of quinine water and fruit juice).  I know this no doubt is a major reason for my late morning difficulties with incontinence.  BUT I've found that lots of coffee and water first thing in the morning is what's needed to get my bowels working. I sometimes even supplement the coffee/water intake with a Diet Pepsi if needed to get things working. So when I cut back to one cup of coffee and no water supplement I no doubt contributed to the subsequent constipation.

Later in the week I tried a compromise by using a bigger mug for my one cup of coffee (this meant using 3 scoops of coffee rather than the 4 scoops used for two cups) and a smaller glass of quinine water and juice. I also decided to take an extra 50 mg of 5-HTP on Thursday night but I delayed taking it until a 4 a.m. pee break.  This worked to get the bowels going again and, by not taking it at bedtime, I didn't have the Manic Morning that I'd experienced when taking 150 mg at bedtime.

I'm going to do some internet searches to see if this interrelationship of constipation, insomnia and fluid intake is experienced by others.

My Parkinson's Week -- 5-HTP and Problem Solving

charter maldriverna

I've mentioned this strange phenomenon before.  Today was a classic example.  I took only the regular 100 mg of 5-HTP at bedtime.  i woke up at 4 a.m. Within the next half hour, I had three substantial  bowel movements (not diarrhea, just good healthy bm's) At the same time, I was bombarded with ideas for  the topics  and structure for this week's first journal entries.. I also had other new thoughts on how to promote the blog to generate more interaction with others.  This is great for creativity but not so great for sleep.  The flood of ideas, as has happened on several past occasions, made it impossible to meditate or get back to sleep.

But not to worry.  It's 7:30.  I've composed three of the four posts planned for the this week's journal.  I'll next  compose the fourth and then bring in the morning Washington Post and NY Times.  If past experience with these 4 a.m. wake-ups plays out, I'll quickly doze off in reading the papers and sleep for an hour or so in my reading chair.

My Parkinson's Week (1) -- Love and Other Drugs

charter maldriverna

I saw and mostly enjoyed this movie last week.  It is a romantic comedy but with a somber overtone in that Anne Hathaway plays the role of Maggie, a 26-year-old with early onset Parkinson's. Jake Gyllenhaul (who played the role of a bisexual husband married to Anne Hathaway's savvy wife in Brokeback Mountain) plays the part here of Jamie, a womanizing Viagra hustler  for Pfizer who in one scene acts out Viagra's warning about erections lasting 4 hours or more.  The two meet and quickly fall in bed.  But both view sex as a fun way to escape from life's travails.  Both insist they are just interested in casual sex without commitment. Jamie is the first to realize that this time he's in love.  Maggie resists, largely because of her fears about what her future holds.

The movie gives a somewhat glancing blow to the symbiotic relationship between drug reps and doctors.
This is exemplified by the portrayal of one doctor who is bored by his practice and is ready, willing, and able to take any inducement offered by a drug rep, particularly if it involves pretty young women.

Another glancing blow is delivered on the issue of the high cost of drugs, particularly for seniors, in a scene where Maggie is escorting a bus load of seniors on a trip to Canada to buy cheaper drugs.

The movie, basically a sex and nudity filled comedy, has a little trouble meshing this with Maggie's Parkinson's. Most of the time she's a tough, I'm-in-control gal. But that veneer shatters in one scene where she runs out of her meds and has an "off" spell. 

Probably the most moving scene in the movie for me was when Maggie, who has accompanied Jamie to a pharmaceutical convention, wanders across the street and into an alternative medicine PD meeting where all the speakers are much further along in the progression of the disease but are nevertheless full of spunk and humor. When Jamie goes looking for Maggie and finds her in this meeting, he is brought up short when he strikes up a conversation with the husband of a woman who is far down in the disease's progression.  This guy warns Jamie about his future if he stays with Maggie, saying that for someone in a relationship with a spouse in the  late stages,  Parkinson's is "not a disease; it's a Russian novel."

But the movie goes on to have a typical happy Hollywood ending.

I wouldn't want to end this cultural posting without mentioning two terrific shows I saw last week --- DC.'s Arena Stage, to introduce its fine new building, has an excellent revival of the Rodgers and Hammerstein musical "Oklahoma.." which I saw Tuesday night.  And last night I was lucky to see the final performance of "Dream Girls" at the Duke Ellington School of the Arts, which ended with cheers, tears, and a standing ovation that continued for a long time as the hundreds of students and faculty who were involved in the production  were brought to the stage.  At the end, the head of the school made a surprise announcement that the cast had been invited to participate in the 40th anniversary concert in February of Earth, Wind & Fire! While the graduation rate at local high schools is just over 50 percent, 98% of  Duke Ellington's students graduate and 95 %  go on to college, often with significant scholarships.

December 12, 2010

My Week with Parkinson's & 5-HTP

charter maldriverna

This will be a  weekly posting from now on.  I'll  report on how I'm doing in living with Parkinson's.  As is the case with the blog itself, while 5-HTP is in the heading of this post, the journal will cover Parkinson's-related issues in general.

I hope to make the weekly posts fairly succinct, but this one will be long, since I want to establish the base line on where I am today..  Bear with me.

Week's Events in Brief

This was a busy week.  Lots of bridge -- my regular Monday bridge at the Iona senior center, the every-other Tuesday bridge at the Westchester Apartments, a very enjoyable game at my house on Friday with good friends, and the frequent Saturday game with a bridge-playing friend at an assisted living facility.  Interesting visit on Sunday to the National Portrait Gallery's excellent Hide/Seek exhibit and supper that night with one of my Nepali pals, lunch at the National Gallery on Tuesday with three fellow BNA retirees, very enjoyable lunch on Wednesday with a friend I've known since 1956 followed by the evening performance of the Shakespeare Theatre's Candide (see note below), and ending the week with a gourmet meal at a good friend's condo Friday night. .

It was nice to see Candide sober.  My wife and I saw (sort of) the original Broadway production of Candide on the night of our wedding (January 19, 1957). We were married in Washington in the morning, had a many-martini lunch after the wedding and drank our way to NYC on the train.  A friend had given us tickets to Candide as a wedding present. We decided early on in the show that we didn't like it and we were vocal about our opinions.  We were asked to leave.Now, 53 years later (32 of them sober!), I found Candide delightful.


Interesting week.  I mistakenly took two 100 mg. pills Sunday night.  The Manic Monday that followed is detailed in earlier posts below. I kept with the regular dosage for the rest of the week until yesterday.  Since I had nothing on my calendar for today, I decided to experiment with taking a 50 mg. pill Saturday afternoon and the usual 100 night. I was wide awake at 4 a.m. this morning.  I woke up with the idea for this weekly journal and laid in bed for 10 minutes or so as ideas came surging in on how to go about it.

I've mentioned before in other postings this unusual waking up with ideas for resolving things that had been bothering me or with a bombardment of new ideas. Prior to taking 5-HTP, I'd never experienced anything like this.  My 5-HTP research hasn't uncovered reports on similar experiences, however.

I may continue to experiment with an extra 50 mg. of 5-HTP every once in a while in the future just to see if I continue to have these bursts of  creativity and energy. But I'm not too keen on the hyper mood this extra dose generates.


I don't have the tremor problem usually associated with PD. Instead my issue is balance. Sinemet and now its generic (carbidopa/levadopa) alleviated the serious problems I was having with this prior to my 9/09 diagnosis. I also have benefited greatly from training I got this summer at Georgetown University Hospital in BIG -- an exercise program devised for people with PD.  (I'll do a posting on this in the next week or so.)

The PD meds I take are 1 mg of Azilect on awakening and 25/100 mg of carbidopa/levodopa (Sinemet) three times during the day -- wake-up, 11 a.m., 6 p.m. and a bedtime 50/100 extended release carbidopa/levodopa. The dosage is the same as I started with back in 9/09 except that early this year my neurologist (Dr. Laxman Bahroo who is affiliated with Georgetown University Hospital's center on movement disorders and Parkinson's) changed the bedtime dosage to the ER(extended release) carbidoba/levodopa since I was waking up in the morning with some aches and pains in my legs.


Normally I'm a pretty upbeat person with lots of energy (bordering on ADHD!). But  I had a bad spell with a very unusual and sudden onset of depression, insomnia and panic attacks that began in May 2006..  I attributed this at the time to a reaction to my abuse of Tylenol  PM and ambien during and after a trip to Nepal.  Over the course of the summer, I was prescribed trazodone, remeron, Lunesta, Rozerem, Lexapro, and clonazepam, none of which worked.  Most made it worse.  Finally it was suggested I try a holistic approach, which eventually did work (see my earlier posting on meditation). I remain convinced that overuse of Tylenol PM and ambien was the triggering culprit.

After that (and the 11/06 installation of blackout curtains-- see insomnia heading later in this posting), I had several years of feeling great.  Often I'd be out for a walk and would find myself saying spontaneously "I love my life!" Then I had a year or two of Parkinson's related depression.

After the PD diagnosis (9/09)., I was prescribed the old-line antidepressant Elavil.  It addressed both the insomnia and the depression but it resulted in my gaining 5 pounds and in feeling groggy in the morning.  When I switched neurologists  to Dr. Bahroo in January 2010, he expressed concern about the cognitive side effects of Elavil. Since that's the last thing I need given my fears about Alzheimer's, I decided to try 5-HTP.  Bingo! I'm now back to "I love my life" and I'm fairly energetic for an 81-year-old.


Before the onset of Parkinson's, sleep had not been a problem until 1997 when, without warning,  as I started to drift off to sleep I would experience a body jerk and then would be wide awake for much of the remainder of the night. This continued most every night.

After several years of this and of intermittently using ambien and Tylenol PM, I found that I could get a good night’s sleep, pill free, by bedding down on the living room couch. One thing puzzled me – how come I couldn’t sleep in my bedroom at night but had no trouble taking my afternoon naps there? Belatedly I wondered if the light coming into the bedroom from the street light directly across the street was causing the problem. I installed blackout blinds in Nov.2006 and immediately began sleeping well and pill free in the bedroom! It only took me 10 years to put two and two together and come up with this solution. Jeez!

My other major bout with insomnia I described in the above discussion of Mood/Energy.

Insomnia came back with the onset of Parkinson's. As noted already, Elavil dealt with it fairly well. Since switching to 5-HTP my sleep patterns have been somewhat more erratic.  Some nights I'll get 8 or 9 hours sleep which is very unusual for me.  Other nights I'll have the 4-5 a.m. wakefulness.  I'm pretty sure that when I up the 5-HTP dosage beyond the regular 100 mg, the chances are that I'm going to be wide awake at 4 or 5 with no chance of using meditation or anything else to get back to sleep. But with the regular 100 mg., sometimes I sleep through the night (but with my usual 1, 2 or 3 bathroom breaks) and get my usual 6-7 hours of sleep.  Other times I'll have trouble at 4 a.m.-- sometimes meditation helps me get back to sleep, sometimes it doesn't.  But even when it doesn't I never think of it as "insomnia." The wakefulness isn't accompanied by any anxiety or tension. More often than not I recover some if not all of the lost sleep by falling asleep while reading the morning Washington Post.  And usually a sleep-deprived night is followed by a night of 7-8 hours of sleep.  


Usually depression, insomnia and constipation are listed as the most common side effects of Parkinson's. For me, all of my bouts of insomnia have been associated with constipation. Often the only way I could get back to sleep was to drink a huge amount of water and have a bowel movement. (I want to do more research on this possible insomnia/constipation connection. Stay posted.)

With 5-HTP, constipation is never a problem.  Instead, I may have as many as 4 or more bm's  during the day -- all regular, no diarrhea.


For years, my weight has hovered around 165, give or take a few pounds. Within just a couple of months of using Elavil, it was approaching 170 with no signs of stopping. Within a couple of months of switching to 5-HTP, my weight dropped below160 for the  first time in years (if not decades) and over the summer months when I was getting a lot of exercise gardening, the needle began dropping toward 155.  But now with the cold weather arriving,it's drifting back up toward 160.  I'd like to see the needle start back toward 155 before the Christmas over-indulging.  That's one reason I decided to experiment with the extra 50 mg. of 5-HTP yesterday.  Studies have shown that 5-HTP can be effective in generating weight loss.

After 20 years of two-pack-a-day smoking and 30 years as a very actively practicing alcoholic, I've been doing pretty good  on my diet since I stopped drinking in 1978.  I don't (can't!!) keep sweets in the house.  I keep containers of prunes, apricots, grapes, clementines and a soy bean mix on the kitchen counters and I snack my way through the day. My breakfast usually consists of a bowl of Fibre One piled high with blueberries, raspberries and blackberries, plus a couple of veggie sausages.  Lunch often is  a bowl of instant oatmeal and a can of sardines and perhaps some fruit and yogurt.Supper all too often is a frozen dinner, but I try to buy only frozen foods that show the sodium content as less than 20 percent of the Recommended Daily Allowance.

I used to worry about my coffee consumption -- almost always two cups in the morning and two at the late afternoon "cocktail hour" plus an occasional lunch-time coffee. But no more worries now that we've seen the recent studies suggesting that coffee consumption can slow down the progression of PD.


This is something I've been good about over the years and I'm sure it's a big reason why I'm doing relatively well today. I started biking to work in the early 1980's, well before virtually anyone else. And I'd be out on my bike weekends and holidays whenever the weather permitted.  Age has slowed this down, but I was still doing a lot of biking until  3 or 4 years ago when the PD balance issues began to slowly emerge.  I substituted fairly long daily walks until this year when my Obsessive/Compulsive Disorder focused on gardening and this took over my exercise life. The BIG exercise therapists told me they saw no reason why I couldn't resume biking as long as I was careful to avoid uneven terrain and heavy traffic and as long as I started wearing a bike helmet which I had avoided during all my prior years of biking.  So I now have a new "comfort bike" (and a helmet).  I had a few bike rides this past fall.

I'm faithful about performing my BIG PD exercises just about every day.  The program calls for doing the exercises twice a day.  I only do them once, but I also do some exercises that my physical therapist had recommended for dealing with PD.

December 11, 2010

Meditation for that 5 a.m. insomnia?

charter maldriverna

Several studies have reported that 55-60% of the people with Parkinson's suffer from insomnia.  Many, like me, experienced insomnia even before being diagnosed  (but while still having undiagnosed PD).  Others begin to have insomnia later, perhaps as a reaction to the carbidoba/levodopa meds or as a result of the vivid dreams that often occur with this drug.  Also as the disease progresses, rapid eye movement (REM) sleep -- the deep sleep -- wanes.

As I've noted in earlier posts, 5-HTP has helped me deal with the insomnia as well as the depression that accompanies PD.  As a result of a radical prostatectomy operation in 1995, I've been dealing with incontinence that has me getting up several times a night.  With 5-HTP, I get back to bed and fall asleep fairly quickly. But I sometimes have problems if the sleep interruption comes around 5 a.m.  I've talked with others with Parkinson's and with friends who also are contending with insomnia and  5 a.m. or thereabouts seems to be a particularly difficult time when it comes to getting back to sleep.

What I've been doing, and it works more often than not, is to meditate if I don't fall back to sleep within a reasonable time..  Much research and many studies have confirmed that meditation can be very helpful in dealing with both insomnia and depression. Also most recommendations on dealing with insomnia say that if you can't get to sleep within 5 or 10 minutes, rather than lie in bed and toss and turn, it's better to get out of bed and do something else (other than watching TV or surfing the web) for 15-30 minutes.  For me, meditation works best here, since it seems as relaxing and restorative as sleep itself and more often than not results in being able to get back to sleep.

How To Meditate

Many how-to books and articles are out there that suggest various techniques to use in meditation.  I've read many of these.  Most of them make it seem too intricate and complicated.  I recommend just following  the simple advice given by "the Parkinson's Guy" on this video:

BTW, the Parkinson's Guy got his "15 minutes of fame" when he showed up to counter protest at a Tea Party rally against the health reform bill last summer and was subjected to ridicule by the protesters.

He's right about meditation. Keep It Simple Stupid! -- Pay attention to a focal point -- monitor your breath and/or repeat a mantra with each breath and/or focus on an outside focal point such as a candle.  When your grasshopper mind bounces to other thoughts, don't think you've failed.  Just go back to your focal point.

Each individual eventually will work out a routine that works for them.  What I've come up with is described in the following post.

How does an old man with Parkinson's meditate when awake at 5 a.m.?

charter maldriverna

This 81-year-old man is not about to sit on the floor and assume  the cross-legged meditation posture usually depicted for meditating..  Also the posture of extended arms resting on the knees with palms upward and fingers in the lotus pose doesn't feel natural to me.

Here's what I do:

I keep a straight-backed dining room chair in the bedroom. When I have trouble falling back to sleep at 5 a.m., I get out of bed, sit on the chair, put a small pillow on my lap, rest my arms on it, and use the "main squeeze" or "secret handshake" positioning of my hands that has worked for me since I came across it several years ago in the book "The Insomnia Solution" by Michael Krugman.  I know.  This sounds awfully hokey. But it got me over a terrible bout of insomnia three year ago when a long list of meds prescribed by my primary care doctor, a sleep center, and a pill shrink didn't work and often made things worse. Here's the "secret" to the "handshake":

  • Put your hands out palms down.  With one hand, grab the thumb of the other hand between the forefinger and the thumb of the grasping hand.
  • Then extend the forefinger of the grasping hand and wrap the fingers of the other hand around it.
Here's what it looks like:

  • Rest your "secret handshake" on the pillow that's on your lap.
  • While breathing naturally, squeeze the captured thumb on the in-breath, relax on the out-breath
  • On the next breath, squeeze the captured forefinger on the in-breath and relax on the out-breath.
  • Keep alternating -- squeezing/relaxing the thumb on one in-breath/out-breath and squeezing/relaxing the forefinger on the next in-breath/out-breath.
This, I realize, seems like a departure from Parkinson's  Guy's KISS recommendation.  But I've found it a much simpler was of meditating than others I've tried. This gives me a dual focal-point: (1) my breathing in and breathing out, and  (2) the alternating squeezing and relaxing of thumb and forefinger, and I add a third --when squeezing on the thumb, I mentally say "squeeze" on the in-breath and "relax" on the out-breath and when squeezing the forefinger, I say "in" on the in-breath and "out" on the out-breath.

The "secret handshake" is used by lots of people in lots of different ways. This particular version works for me because I've found I need a triple-barreled  focal point to ward off the bombardment of other thoughts from my grasshopper mind. Like everyone else who meditates, distracting thoughts and ideas still get through but I've learned to be relaxed about that and just go back to the focal points.

As I mentioned, it got me out of a bad spot several years ago.  I've used it since, but not regularly enough.  I will use it, for example, if I'm sitting in my car waiting  for someone.  It gives me something helpful to do other than fume at the wait. I try to set aside time every day to spend 5 or 10 minutes or longer on meditation, but I'm not as disciplined about this as I'd like to be.

However, now with the 5 a.m. insomnia, I'm meditating more frequently..  Even when I'm not able to get back to sleep, I figure the time spent meditating  is as good and helpful as time spent sleeping.  And usually when it doesn't work, I find I  catch up on the lost sleep when I doze off over the morning newspaper.  

December 8, 2010

Cautions on using Canadian online pharmacies

charter maldriverna

I mentioned in the posting  below that I had looked at the possibility of reducing the cost of Azilect by buying it online from a Canadian pharmacy, giving as an example a quote I got of  $525 for a 90-day supply of Azilect contrasted with the $938 I'm currently paying.  The quote came from Maple Leaf Meds in British Columbia.
My daughter cautioned me about the high potential for scams when using Canadian online pharmacies. She's right!

I spent an hour or so this morning web surfing on this.  The online "Canadian Pharmacy" apparently leads the list of bogus scams world-wide.  When you surf for "online Canadian pharmacies" it, of course, keeps coming up, The site reputedly is run by a Russian mafia mob.

I couldn't find any legitimate site that reviews and rates Canadian online pharmacies (found several bogus ones)..  But one legit site suggested that the best way to check out a Canadian online pharmacy site is to see if it's web page shows the following:
  •  Canadian International Pharmacy Association approval
  •  BuySAFE seal
  •   TRUSTe privacy seal
  • Shopper Approval online seal which allows you to read reviews from actual customers and give a review yourself
I checked the Maple Leaf Meds web page and it had the CIPA approval but none of the others and a further web search indicated cause for concern about Maple Leaf.

Our FDA, btw, says it regards the buying of meds in Canada as illegal.  But it has never tried prosecuting anyone and is unlikely to do so for political reasons.

My concerns about again reaching the donut hole next year are eased a bit by the new health care law which provides that when you reach the donut hole in 2011 you need only pay 50% of the cost of brand names like Azilect . And the donut hole is scheduled to get smaller each year thereafter and disappear in 2020. Of course, at its current price, my Azilect by itself will get me to the donut hole by the middle of the third quarter of next year.  My other costly med is Lipitor; a generic for this hopefully will be available in late 2011.

In any event, I need to go slowly and carefully in exploring  cost-saving options.

December 7, 2010

Dealing with high cost of Azilect

charter maldriverna
I'm on the AARP Medicarefix Preferred plan for my prescription meds.  This year, my first full year on PD meds, I hit the donut hole. I switched from Sinemet to the generic Carbidopa/Levodopa, which was a big cost saving.

Unfortunately there's no generic for Azilect and, boy, is it pricey! A 90-day supply costs $938.14,  a price that AARP says it negotiated down from the retail price of $988.28. So the yearly cost is $3752.58.

I did some web searching on this and found a good site -- --that searches for the best costs on prescription meds. The first time I tried it on Azilect I got a price of $570 from a company in Grenada that got good reviews.  Today when I checked healthpricer gave a price of $525 from a Canadian company, Maple Leaf Meds, that gets even better reviews. It's website is 

I've got a supply of Azilect that will last for a couple of months, so I'll continue to check out this possibility. And I'll talk with my neurologist about Azilect and it s costs when I have my next appointment at the end of this month.

December 6, 2010

Morning After 5-HTP Overdose

charter maldriverna

 No hangover from the manic Sunday.  I got over 8 hours of sleep Sunday night.  Woke up feeling great.

Interesting that 100 mg gives me a pretty good night's sleep but jumping to 200 mg had me up after 4 hours sleep and off and running for the day.  When I experimented with 150 mg for weight loss, I had a couple of good nights but then had an experience similar to Sunday's.

OD on 5-HTP - 5 a.m.

Note: Ignore the date line.  This blog template insists on ordering the posts by putting the most recent first.  Today (SUNDAY) I wanted to order the posts regarding my OD day in the reverse order.  Apparently the only was to do this is to change the date line.

Last night when I was taking my bedtime pills I got confused (nothing new here) and couldn't remember if I'd taken my 100 mg. 5-HTP. So I gambled on taking a 100 mg pill, hoping I hadn't already taken one.

Now (5 a.m.) it's clear that I took two pills.  I've been up for an hour.  I feel terrific. I've spent the past hour bombarded with ideas and plans.

I'll continue posting throughout the day.

December 5, 2010

OD on 5-HTP - 8 a.m.

Still going strong. I've had my second bowel movement of the morning. I've paid bills, written e-mails, researched several issues, had breakfast, filled the bird feeder (highly recommend the new and cleverly designed Squirrel Buster). I seem to be settling down a little from the manic high that I woke with. Let's see if I fall asleep while reading the Sunday Washington Post and NY Times.:-)

December 4, 2010

OD on 5-HTP -- 10 p.m.

I continued full blast right up to noon, then had lunch and dozed off over the newspapers before a friend came by a little after 1 to go to the Hide/Seek exhibit at the National Portrait Gallery. Then home for a quick nap and coffee before heading out for a 7 p.m.dinner date.

The mania seemed to subside after lunch but I still had enough energy to get through a full afternoon and evening despite getting only 4 hours of sleep.

Be glad to get back to the 100 mg nighttime dosage!

December 3, 2010

Vitamin B6, L-Dopa, Carbidopa, and 5-HTP

Anyone taking L-Dopa/Carbidopa and/or 5-HTP shouldn't take more than the Recommended Daily Allowance (RDA) of Vitamin B6.  See:

Here's some of what the above article says:

"A Parkinson's disease patient taking L-DOPA cannot take more than
the RDA of B6, because doing so would act to neutralize
oral L-DOPA too quickly. These days, almost all Parkinson's
patients on L-DOPA take the drug in a combination with an
artificial decarboxylase inhibitor, called Carbidopa (the
combination is called Sinemet). But even with Carbidopa,
Parkinson's patients are advised not to exceed a daily dose of B6
of 25 mg, since more will overwhelm the Carbidopa effect, and
cause pharmacologic L-DOPA to be destroyed in the liver before it
can get into the brain.

Now, Carbidopa, because it acts on the same metabolizing
enzyme in the liver, performs exactly the same preservative
service for 5-HTP as for L-DOPA."

The article goes on to discuss how 5-HTP and Carbidopa work together to boost the effectiveness of 5-HTP

November 30, 2010

A Tylenol PM Slip

One problem I've found with 5-HTP is that my sleep can be very fragmented, interrupted by 3 or 4 or more "pee breaks" during the night.  Most of the time I fall back to sleep immediately but sometimes, particularly if it's a 5 a.m. or thereabouts break, I'll lie awake for 15-30 minutes before getting back to sleep. But since 5-HTP also stabilizes my mood, I'm calm and relaxed during the time awake. And then I usually log in another 2 hours of sleep.

Every once in awhile, however, I decide it would be nice to have a less interrupted night's sleep and I take two Tylenol PM's rather than the 5-HTP at bedtime. That's what I did last night and I logged in 7-plus hours of sleep with only one  break. 

I do this rarely because I have had a bad experience with extended use of Tylenol PM.  Since 2001, I've made a dozen or more trips to Nepal and neighboring countries. To deal with the jet lag from the long flights coming and going, I would use Tylenol PM for the first few post-flight days.  Sometimes I've continued to use it off and on during the  two or three weeks I'm traveling. And, I'm embarrassed to admit, on particularly difficult nights I sometimes would throw in half of an Ambien. As a recovering alcoholic, I should know better than to abuse drugs like this!  

Beginning in June 2006, I had probably my worst summer ever -- several difficult months marked by insomnia, depression and panic attacks.  I attributed this at the outset to a reaction to my abuse of Tylenol  PM and ambien during and after a trip to Nepal.  But when I went to a sleep center and several doctors and a psychiatrist, they heard "depression" and "panic attacks" and got out their prescription pads. Over the course of the summer, I was prescribed trazodone, remeron, Lunesta, Rozerem, Lexapro, and clonazepam, none of which worked.  Most made it worse.  Finally it was suggested I try a holistic approach, which eventually did work. I remain convinced that overuse of Tylenol PM and ambien was the initial trigger and that piling on the other drugs compounded the problem.

So I have good reason to be cautious about these meds. I've also read warnings that the drug  (Diphenhydramine) in Tylenol PM (and in Benadryl) should not be used on a regular basis by the elderly.

I'm writing this mainly to remind myself that 5-HTP is a much safer and better choice as a sleep aid.

November 28, 2010

5-HTP and Problem Solving

I hesitate to post this because it sounds so "New Age."  But here goes.  Since taking 5-HTP, I've found that often when I go to bed wrestling with a problem, I wake up the next morning with a solution and not just a solution but also a detailed plan of action.  Prior to 5-HTP, a good night's sleep sometimes would help resolve a problem, but not with the clarity and details that I'm now experiencing.

This morning was an example.  After spending much of yesterday researching and writing the two posts on the faulty cautions about the safety of 5-HTP  (see posts below), I went to bed worried that sooner or later I'd run out of things to say about 5-HTP..  I woke up at 5 a.m.  (instead of the usual  7 or 8 a.m.) with the decision to broaden the blog's narrow focus so that I could discuss all of the other things that have made this, my first year after the Parkinson's diagnosis, one of the best years of my life. Then, I stood frozen at the bathroom mirror getting ready to brush my teeth as all sorts of ideas on how to go about this came flooding in..

I've Googled "5-HTP and problem-solving" in the past and not gotten any hits.  This is a reminder that Parkinson's is a very idiosyncratic disease and that each individual's reaction to 5-HTP also is unique.

Thanksgiving Weight Loss!

I, once again, give thanks for 5-HTP,  In the week before Thanksgiving, I began experiencing a return of constipation and I also was urinating less frequently AND my weight was going back up.(Prior to switching to 5-HTP, I had taken the prescription antidepressant Elavil and gained 5 pounds in a couple of months; after switching to Elavil, I lost 10 pounds).  Since 5-HTP is used by many for weight control, I decided to up my dosage from the 100 mg I take at bedtime to 150.  However, on the few occasions when I've taken 150 mg. at bedtime, I've logged in only 5 or 6 hours sleep and awakened in a semi-manic go-go mood.  So I decided instead to take the extra 50 mg. with my afternoon nap on the day before Thanksgiving.  On Thanksgiving I overindulged as usual and was prepared for bad news when I got on the scale the next morning.  I was pleasantly shocked to find that I'd lost a pound!

I've continued on this regimen for the past few days and have lost an additional pound or two.  I may keep this up for another day or two, but then return to the 100 mg at bedtime only.  The first few days of taking the extra 50 mg at nap time, I got my usual 7 hours plus sleep at night without the manic morning after.  But now I'm beginning to experience the loss of sleep and morning mania. (But this has its plus side.  See the posting today on "5-HTP and Problem Solving.")

The reports on 5-HTP and weight loss assume that this is because 5-HTP acts as an appetite suppressant. This hasn't been my experience.  Instead, 5-HTP seems to produce much more frequent bowel movements and urination.

November 27, 2010

Cautions about 5-HTP contamination and EMS are ill-founded

 Anyone doing internet research on the safety of  5-HTP will quickly find cautions like this one from WebMD, which is normally one of the best sites for checking out drugs and supplements:

"Don’t use 5-HTP until more is known. 5-HTP might be UNSAFE. Some people who have taken it have come down with eosinophilia-myalgia syndrome (EMS), a serious condition involving extreme muscle tenderness (myalgia) and blood abnormalities (eosinophilia). Some people think the EMS might be caused by an accidental ingredient (contaminant) in some 5-HTP products. But there is not enough scientific evidence to know if EMS is caused by 5-HTP, a contaminant, or some other factor. Until more is known, avoid taking 5-HTP."

The precursor of  5-HTP was L-tryptophan which was used as a dietary supplement until it was banned in 1989 due to an outbreak of EMS that was traced to a contaminated lot of 5-HTP from one manufacturer. Because of its chemical and biochemical relationship to L-tryptophan, concerns have been raised about 5-HTP and there were reports of a possible EMS-like contamination with 5-HTP in 1994.  But a 2004 study reviewed all of the earlier studies and reports on 5-HTP and came to this conclusion:

 "no definitive cases of toxicity have emerged despite the worldwide usage of 5-HTP for last 20 years, with the possible exception of one unresolved case of a Canadian woman. Extensive analyses of several sources of 5-HTP have shown no toxic contaminants similar to those associated with L-Trp, nor the presence of any other significant impurities. A minor chromatographic peak (peak X) reported in some 5-HTP samples lacks credibility due to chromatographic artifacts and infinitesimal concentrations, and has raised undue speculations concerning its chemistry and toxicity."

A 2006 study at Georgetown University's Medical Center on whether 5-HTP causes EMS experimented with a group of rats and concluded that "no significant evidence of EMS was seen in rats receiving high-dose 5-HTP for 1 year."

Once again, as with the concerns about 5-HTP and carbidopa (see posting below), a single ambiguous finding has led to repeated website warnings despite the fact that 5-HTP has been very widely used  for years without any verifiable reports of EMS contamination.

Carbidopa and 5-HTP mixed messages

If when contemplating 5-HTP you do what I did and check it out on Google to see if there are safety concerns, you find that the most oft-cited concern is about mixing 5-HTP with carbidopa.  Since Carbidopa/Levodopa is the "gold medal" med for treating Parkinson's, this concern would seem to make it advisable to forget about 5-HTP, particularly since the numerous mentions made it appear that a number of studies had led to this concern.

However, when I checked into it further, I found that virtually every website that expressed a caution about this used exactly the same words: 
 “A scleroderma-like skin condition has been reported in some taking a combination of 5-HTP and carbidopa."

I began  to suspect that everybody was quoting each other.

Then I went to PubMed, the service of the US National Library of Medicine that includes over 19 million citations from MEDLINE and other life science journals, and searched for "5-HTP and carbidopa and scheroderma" This produced 7 hits.  But in examining them, it appeared that the 6 most recent reports were on unrelated studies that happened to cite  the 7th study -- a 1980 study in France that was published in the New England Journal of Medicine  and involved 15 people.   The published abstract provided a very thin basis for all of the subsequent cautions.  See:

It's amazing that one small study in 1980 can generate a web-full of warnings.  Meanwhile thousands, if not millions, of people have used 5-HTP without any current reports of this condition. Europeans have been using 5-HTP much longer and more frequently than in the U.S.  AND in Europe it is recommended that 5-HTP be taken WITH carbidopa.

Here's what the Wikipedia entry on Carbidopa has to say:

"Carbidopa is also used in combination with 5-HTP, a naturally occurring amino acid which is a precursor to the neurotransmitter serotonin and an intermediate in tryptophan metabolism. Carbidopa prevents 5-HTP's metabolism in the liver and the resulting elevated levels of serotonin in the blood. Research shows that co-administration of 5-HTP and carbidopa greatly increases plasma 5-HTP levels. 5-HTP has no reported cases of heart valve disease associated with it as found in the peer reviewed literature. [2][3] In Europe, 5-HTP is prescribed with carbidopa to prevent the conversion of 5-HTP into serotonin until it reaches the brain.[4]"