January 23, 2011

My Parkinson's Week -- Add incontinence to depression, and insomnia on the deceased (or at least discontinued) list

The incontinence exercises are paying off big time. (Put "incontinence" in the search box and you'll find my prior descriptions of those exercises.) The 4 a.m. meditation hour with its interaction with 5-HTP continues to be divided between generating problem-solving ideas and actual meditation and makes it easy to get back to sleep. More on this next week.

The new year is off to a great start!

AND I'm sending a BIG THANK YOU to all of you who have sent in the nice comments. Love you all!

John

January 18, 2011

9 Reasons Why 2010 -- my first year with a Parkinson's diagnosis -- was the best of my 81 years

New Year’s Day 2011 marked the end of my first calendar year after my diagnosis with Parkinson's in September 2009. So this is a good time to pause and reflect on where I've been and where I'm going. I've concluded, surprisingly, that the past year was probably my best ever. Reading this, you might well wonder ---

If your first year with a PD diagnosis was your best, were your earlier years that miserable?

On the contrary, I've had a pretty good life. Professionally, within a month of leaving Cornell in 1955, I landed an editorial job at BNA, an employee-owned legal publisher in Washington, DC, where I enjoyed a 40-year career in labor relations and employment law, rising to become a board member and vice president of HR by the time I retired.

Personally, my life changed for the better once I got sober and came out in 1978, but my kids make me grateful for the years I tried to hide in a marriage, and to this day, I have yet to find anyone with whom I'm as compatible as I was with my now-deceased wife.
When I got sober and became honest about my innate nature, I quickly acquired a community and support network of others who were going through the same struggles. My life since then has been full of fun, friends, and rewards. Those first exhilarating years of being sober and out are close runner-ups for the "Best Year" award. But 2010 still wins the gold medal for the reasons briefly listed below. (Separate posts follow elaborating on each reason if you are interested in a fuller explanation.)

1. PD has given me a new focus, challenge, and cause.
2. Knowing what I'm dealing with and using the PD meds and exercises has restored my spirits, energy, and drive.
3. 5-HTP has alleviated my depression, insomnia, and constipation, greatly enhancing the quality of my life. It also has had some interesting side effects. (See separate post below.)
4. Working on this blog definitely adds to the quality of my life, I love doing this!
5. My PD support group and online support networks give me a community for sharing our experience, strength, and hope … and laughs.
6. I've returned to meditation and find it to be more helpful than ever, particularly when combined with 5-HTP.
7. Exercise has been a BIG factor in making 2010 my best year ever.
8. My days are more filled than ever with activities that keep me interested and involved.
9. Last and definitely not least, my already strong support network of family and friends got even stronger in 2010.

No problems? Of course the past year has not been problem-free, Life always is a hassle. One of my best friends lost his 15-year struggle with cancer last year. Several friends have been hard-hit by the recession. Others are struggling with health problems and the lack of affordable insurance. My libido seems to be sinking and almost disappearing (which might be a blessing given my past history). 

Enough about me. How about you? I’d love to hear from you about how you’ve been dealing with any of these issues. Also this blog will be posting a report each week on research done in answer to inquiries or comments submitted by readers like you. (I love doing internet research.)

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January 17, 2011

1. Parkinson's has given me a new focus, challenge and cause.

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My best drinking buddy, who knew me better than most, once told me: "You aren't truly happy unless you have some cause you're fighting for." A bit overblown, as many of our alcoholic conversations were, but it's true that I get a great deal of satisfaction out of working on a project that will help others.

I've been involved in several of these projects since my retirement in 1994. But Parkinson's has given me the opportunity to work on something that helps others and myself. In many ways, it's similar to the early years of my alcoholism recovery in this regard. But, unlike Parkinson's, the progressive nature of the alcoholism "disease" can be arrested by simply not drinking. No way has been found so far to stop the progressive decline from Parkinson's. You might think that this would make it depressing to do battle with Parkinson's. But that hasn't been true for me. Nor has that been the case with others, even those who are much further down the PD road than I am.

Michael J. Fox is the most prominent example of this positive attitude. He decided to title his memoir on his first 10 years of dealing with early-onset Parkinson's "Lucky Man." He explains:
"Coping with the relentless assault and the accumulating damage [of Parkinson's] is not easy. Nobody would ever choose to have this visited upon them. Still, this unexpected crisis forced a fundamental life decision: adopt a siege mentality -- or embark upon a journey. What it was -- courage? acceptance? wisdom? -- that finally allowed me to go down the second road (after spending a few disastrous years on the first) was unquestionably a gift -- and absent this neurophysiological catastrophe, I would never have opened it, or been so profoundly enriched. That's why I consider myself a lucky man."

I can only say "Amen!" … and add "Lucky John."

2. Knowing what I'm dealing with and using the Parkinson's meds and exercises has restored my spirits, energy, and drive.

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I now realize that I had Parkinson's for several years before I was diagnosed. I lost my sense of smell (an early indicator of PD) four years ago. My right arm stopped swinging when I walked at least three years ago. For a year or more before diagnosis I was having serious problems with my sense of balance, and I was dealing with the depression, insomnia, and constipation that often accompanies PD. But I didn't have (and still don't) the typical PD tremor, so an earlier diagnosis was missed.

I knew something was wrong, but I thought it was probably age-related deterioration and would just keep on going on. So with this assumption combined with the depression, I made plans to sell my house (which I love), sell my car, and move into a senior residence in downtown DC. And I bought the book Final Exit, which I intended to make use of at the first signs of dementia or Alzheimer's.

Given this mind set, the PD diagnosis was almost a relief. At least my problems had a label. As I've said many times, I can deal with adversity a lot better than with ambiguity. I was given a prescription for Sinemet, the brand name for carbidopa/levadopa, which is the "gold medal" med for PD, and for Azilect. Almost immediately I began to feel better physically. The right arm began to move some when I walked. Maintaining my balance wasn't as much of a problem.

I also was prescribed the old-line antidepressant Elavil to deal with the depression and insomnia. Almost immediately, it took care of the insomnia and much of the depression. But it also left me feeling groggy for most of the morning, and I began gaining weight, putting on over 5 pounds in the few months I was on Elavil.

I got a new neurologist in December 2009 -- Dr. Laxman Bahroo, who is affiliated with the Neurology Department at Georgetown University Hospital. He expressed concern about the possible cognitive side effects of Elavil. Given my concerns about dementia and/or Alzheimer's, I decided to switch from the Elavil to an over-the-counter supplement -- 5-HTP -- that I had tried a few years earlier. 5-HTP warrants a separate billing as one of the reasons 2010 was my best year.

3. 5-HTP has greatly enhanced the quality of my life and has had some interesting side effects

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Before I start touting how great 5-HTP has proved for me, I want to emphasize the "for me" aspect. Parkinson's is a very idiosyncratic disease, and the reactions to any drug or supplement, whether prescribed or over the counter, varies greatly among individuals. So don't rush out and buy some 5-HTP based on what follows. For example, 5-HTP should not be used if you already are on an antidepressant unless your doctor says it’s OK.

Several friends have tried 5-HTP upon hearing my raves but without a lot of success. However, all but one of these friends, did not have PD. And the jury is still out with the one who has PD. I have a theory, substantiated by some studies, that 5-HTP works particularly well when combined with carbidopa/levadopa. One of the reasons I started this blog is to see if others with PD also are having a similar experience to mine.

If you do an online search on 5-HTP's interaction with other meds, you will find reliable information at sites like www.WebMD.com. You may be concerned by warnings you'll find about using 5-HTP and levadopa, but I've done further research on this, which you can find in two blog posting on Nov. 27, 2010, that show no basis for concern if you are taking carbidopa/levodopa. Some studies have shown an actual beneficial interaction.

Now back to me and 5-HTP. What is 5-HTP? It's basically a serotonin booster. Serotonin is allied with dopamine as two of the three major neurotransmitters in the brain. PD, of course, causes depletion in dopamine.

I started with the smallest available dosage of 5-HTP (50 mg) and found that it worked almost as well as the Elavil for insomnia and even better for depression. 5-HTP did not produce the morning grogginess that always bothered me when taking Elavil or Ambien. And instead of gaining weight, I lost 10 pounds within the first few months on 5-HTP. (5HTP is often used by those seeking to lose weight, but usually in much higher doses than I could handle.) 5-HTP also has alleviated the periodic constipation I've had that has always seemed to be tied to sleep difficulties. (I intend to do research and a posting later on possible links between constipation and insomnia).


After six months on the 50 mg dosage, my sleep was becoming increasingly fragmented so I upped the dosage to 100 mg. I experimented a couple of times with taking an extra 50 mg when my bathroom scale showed my weight ascending yet again. But I've found this pushes me over the border into manic hyperactivity.

A particularly strange -- and seemingly unique (a Google search found no other reports) -- side effect I've experienced with 5-HTP is that I often wake up in the morning with a blast of creativity -- ideas come flooding in for solving problems that had been bothering me or for undertaking new ventures. When this happens at my usual 4 to 5 a.m. wakening, it sometimes is difficult to get back to sleep. But thanks to my current practice of meditating at that time, I’ve come to see that early awakening period as one of my favorite times of the day. (See the entry below on meditation.)

4. Working on this blog definitely adds to the quality of my life.

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While I was HR VP at BNA, we brought in a psychologist/consultant, Karol Wasylyshyn, who specializes in executive development and couching. In my last year before retirement, she did a pre-retirement assessment on me to come up with a plan for a creative retirement.

One of her major recommendations was that i I look for a driving force that would involve a riveting interaction with other people (preferably one on one), have tangible outcomes, be intellectually demanding and multifaceted, and require a synthesis of information. Now, l6 years after my retirement, I've found a project that is right on target with this template.

I've always enjoyed writing, particularly when it involves pulling together information from a variety of sources. And I’ve always enjoyed research projects, but the Internet has escalated that interest dramatically. I can happily spend hours tracking down information through Google.

I would be delighted if this blog, which is in its infancy, grows into a place where people with PD and their caregivers and friends can turn when they want questions answered or research done. I also will be glad to be on the receiving end of helpful tips from others.

5. My Parkinson's support group and online support networks give me a community for sharing experience, strength, and hope … and laughs.

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When I was dealing with getting sober and coming out into the gay world, becoming involved with others who shared these concerns was one of the things that enriched my life. The feeling of belonging to a community is recognized by medical authorities as a key to mental health.

Because of these experiences with alcoholism and coming out, I early on sought a PD support group. Finding one was easy. The Parkinson's Foundation sponsors groups all over the country. By just putting "parkinson's support group dc" into the Google search box, I quickly found one that's just a 10-minute drive from my house. (You also could log in to the Parkinson's Foundation's website and find local groups.)

When I told a friend that I had joined a Parkinson's support group and many of its members were much further down the road of Parkinson's progression, he asked: "Isn't that depressing?" I replied that it actually was reassuring and inspiring. Our leader was diagnosed with Parkinson's in 1987 at age 43, yet today -- 23 years later -- he's a high-functioning person with PD. Others in the group are not functioning as well, but one member in the later stages of the progression.is probably the most inspiring. Even though he needs a walker and a caregiver to get to the meetings, he's one of the most faithful in attending. He shows the determination to keep on fighting that marks just about every member of the group. A robust sense of humor about the problems of living with PD also is shared.

When I joined this support group, I thought we'd meet each week to exchange information on what works in dealing with the physical aspects of the disease. But I soon realized that the moderator was determined to keep us focused on sharing the emotional turmoil. This makes sense. The other stuff you can get from your doctor, books, online, and elsewhere. The emotions and feelings can best be addressed face to face. New friendships are sprouting from the group, just as happened when I was dealing with my alcoholism and sexual orientation

Online support groups also are readily available. If you go to groups.yahoo.com, and put "Parkinson's" in the search box, you'll find many groups listed. I've joined two:
• plwp2 -- People Living With Parkinson's
• pcsg -- Parkinson's Caregivers Support Group

(BTW, when I join any group, I select daily e-mails so that I'm not bombarded with e-mail interruptions during the day.)

6. I've returned to meditation and find it to be more helpful than ever.

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Since meditation only came into play toward the end of the year, it’s a late bloomer in making 2010 my best year.

I'd tried meditation in the past but erratically and without much success until three years ago, when I was going through a particularly rough period. After running through a half dozen prescribed antianxiety and sleep meds, I stumbled across a meditation adaptation designed to deal with insomnia. (I described this in some detail in a posting on Dec. 11.)

Since then, I’ve used this form of meditation off and on whenever I had problems getting back to sleep, but in the past,I seldom meditated for more than 5 or 10 minutes. Now I’m in a very different pattern.

Thanks to the incontinence training I’ve just started, I now get up for a bathroom break only once a night, usually sometime between 4 and 5 a.m. In the past, I often had trouble getting back to sleep at that hour. I know from talking with other seniors that this is often their worst time slot in dealing with the insomnia that seems to come with aging (and often accompanies PD).

Now, after I get up for the bathroom break, I spend a few minutes doing the Kegel and other exercises recommended by my incontinence physical therapist and then sit on the straight-backed chair in my bedroom and start meditating. Though I sometimes have to deal with the new-ideas bombardment that I’ve attributed to 5-HTP, I let these ideas go and then get back to observing my breathing and using adaptations of the “secret handshake” (described in the Dec. 11 posting).

This meditation goes on for at least half an hour and sometimes for more than an hour. I’m very comfortable with this, since I’ve conned myself into believing that time spent meditating is just as good as time spent sleeping. And this may well be true.

When done meditating, I get back in bed and almost invariably fall asleep quickly, logging another couple of hours of sleep.

This meditation routine, combined with the mood-enhancing effect of 5-HTP, resulted in my experiencing the most mellow Christmas season I can remember. And I actually look forward to the 4 a.m. awakening and meditation.

7. Exercise has been a BIG factor in making 2010 my best year ever.

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Exercise has always been a big part of my life. The Parkinson’s depression I was experiencing before my diagnosis was compounded by my unhappiness at giving up biking because of balance concerns. Biking had been one of the most important features of my life. Long before bike commuting became common, I started biking to work back in the early 1960s, even through most of Washington’s cold winters and hot, humid summers. I also could be found on my bike most weekends when the weather was at all tolerable.

When I abandoned biking a few years ago, I substituted walking and took hour-long walks most days around my lovely neighborhood (the Palisades section of D.C.). But tripping and falling began to be a problem.

BIG exercise program

Dr. Bahroo, my neurologist, early last year gave me a prescription (the needed pass for getting my sessions covered by Medicare) for the BIG exercise program at the physical therapy department at Georgetown University Hospital. This program was specifically designed for people with Parkinson’s by the same organization – Lee Silverman Voice Treatment (LSVT) – that developed the LOUD speech therapy for PD people. Georgetown’s program is also designed to help with the individual client’s special needs. The PT program also incorporates some of the ideas of the voice training program since you are trained to shout out your exercise counts in a good, loud voice. (If you are interested in finding someone to work with on either of these programs, click on the “Find a Clinician” button on this home page for LSVT: http://www.lsvtglobal.com/index.php?action=what-is-lsvt)

The BIG physical therapy program is pretty intense and probably works best for those in the early stages of PD. It also requires a commitment to four weeks of one-hour training session twice a week.

The seven exercises I learned in BIG are now an integral part of my daily life. I have an incentive to keep doing them, since I can clearly see that I’m much better for it. My therapists also taught me how to walk with big steps and arm swings and worked on the balance issues I have while gardening.

Finally, the therapists surprised me by saying they couldn’t see any reason why I couldn’t resume biking. One therapist, a bike specialist, had me bring my bike in and checked that it was set up properly for me. He also suggested ways for me to get on and off the bike without the balance problems I had been having.

Incontinence rehab program

If it hadn’t been for the success I had with the BIG program, I probably wouldn’t have signed up for another therapy program the hospital offered – a program to deal with incontinence. I’ve suffered with this ever since I had a radical prostatectomy in 1995, and aging and Parkinson’s has made it worse. I’d read that Kegel exercises were the best way of dealing with incontinence, and I tried them in the past without any discernible success.

Nevertheless, with low expectations, I got a prescription for the incontinence program from my urologist and began the program late in 2010. I’ve been amazed and delighted with the progress after only a couple of training sessions. I used to get up three or four times a night to pee. Now it’s only one time. The daytime leakage and panic about finding a bathroom now seem to be lessening, and I’m only midway through the program.

Gardening

In 2010, I found a new obsessive/compulsive physical activity -- gardening. When I retired in 1995, I used a terrific professional landscaper to replace my backyard lawn with a large fish pond and surrounding gardens. Then three or four years ago, I was tiring of power-mowing the front lawn in D.C.’s summer heat and humidity, so I had the same landscaper to substitute ground covers and plants.

While the landscaper did a great job on the basics, there’s still much maintenance to do and much that can be done to enhance the basics. Last year I got caught up in this big time, and I’m thoroughly enjoying it. Unlike my former preoccupations with biking or walking, gardening goes beyond the physical benefits of exercise by producing an immediately visible reward.

Physical activity in the winter remains a problem, however. I may have to begin using the elliptical training machine that sits abandoned in my furnace room. 

8. My days are more filled than ever with activities that keep me interested and involved

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Here’s a quick run-down:

Travel


In 1978, my wife died as did our dog and my son and daughter headed off to start their careers. For the next five years, my vacations consisted of visiting friends in London and then taking off on my own for Europe with a 15-day Eurail pass and bouncing around the continent with no reservations and just a vague idea of where I wanted to go. After years of having to consult with a wife, two kids and a dog on vacation options, I loved traveling by myself.

In subsequent years, I spent much time in the UK. I had two very good friends in London, one of whom I usually stayed with and who loved to travel Scotland. Then a DC pal and I began planning trips together every year, usually to Europe but once to China.

In 2001, the pattern shifted. Two of my London pals and I planned a 3-week trip to India. My son who is both a traveler and trekker told me that if I was going to India I should go to Nepal. So we added on a side trip to Nepal. I fell in love with Nepal and its people. For the next 7 or 8 years, I made at least one and usually two trips to Nepal. Each visit usually involved a side trip to a nearby country – India, Sri Lanka, Thailand, Laos, Sikkim, Tibet and Bhutan (my favorite). I also “adopted” a Nepali family and worked for 6 years or more on getting a U.S. green card for the husband. My last trip to Nepal was in December 1978 when we nailed down the green card and he arrived in the U.S. in January 2009.

After all these years filled with travels, I only took one trip in 2009 – a short trip to visit my brother and his family in Ithaca with a few days in Niagara Falls added on. My concern about my physical “aging” and my unacknowledged Parkinson’s depression made me think that my overseas travel days were over and I was resigned to spending most of my time at home base.

But with the Parkinson’s diagnosis and treatments came the travel renaissance. In 2010, I had a terrific 3-week trip with a good friend to Turkey – Istanbul, the area around Ephesus, and Cappadocia. This involved a fair about of hill climbing and trekking and I was pleased with my ability to handle it. Then in August I decided I needed a reprieve from what was to turn out to be Washington’s hottest summer ever. So I took a one-week trip on my own to the Canadian Rockies – Calgary, Banff, and Jasper (Jasper being my favorite).

In the fall, my Nepali housemate decided he had enough free time during his mid-semester break in his MBA program at American University for us to take a quick trip to California – two days in San Francisco, one very long day driving the Pacific Coast highway from SF to La Jolla, and two days in San Diego. I was pleased that I could handle long napless days during this trip that also was filled with lots of walking.

Bridge

I’ve always enjoyed bridge and have several local friends with whom I’ve played over the years on a somewhat hit or miss basis. But now my bridge cup runneth over. I play every Monday afternoon at the local senior center and every other Tuesday evening at a nearby condo development, , both are just a short drive from my house. Often I also play at a Saturday afternoon bridge game that a good friend brings to an assisted living facility that is now the residence of a very nice guy who used to play with us at the other venues, And I still have regular bridge get-togethers with other pals.

The game is fun and challenging in and of itself. But it’s also a great way to meet new friends and to maintain old friendships. I wonder what the younger generations are going to do in their retirements. Playing video games doesn’t seem as satisfying or social.

Theatre and other “cultural” activities

After years of semi-drought, Washington is now second only to NYC in the number of live theatrical performances. And most of our museums are world-class AND free.

I maintain season subscriptions to the Kennedy Center’s ballet series, the Shakespeare Theatre, and the Studio Theatre, each with a different friend. I find the subscription series are a great way to ensure that I get out to the theater and maintain friendships.

Now, thanks to the BIG exercise program, I’ll be able to make more use of the mall museums since I can put the bike on the car’s bike rack and park free a short bike-able distance from the mall where the museums are centered

A variety of other activities

As mentioned earlier, gardening has become a treasured new hobby. Going to movies, reading books and magazines, working Sudoku puzzles take up any gaps in the day.

I’ve always lived my life by Mae West’s motto – “Anything worth doing is worth overdoing.” 

9. Last and definitely not least, my already strong support net of family and friends got even stronger in 2010.

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2010 was a very good year for the family. My son bought his “dream house” in forested hills that are an hour or more driving time from center city DC but well worth the commute for this woods-loving guy. My daughter, following in the footsteps of her parents, is doing very well in a research/writing job with a consulting company. My grandson is in his third year at an arts school and is getting well deserved accolades on his art work. One of my two granddaughters is expecting a sister in April for my 4-year-old great-granddaughter, My other granddaughter graduated from college in 2010 and has been accepted in law school.

I am exceptionally blessed in this age of nomadic families by having all of the family in the D.C. area (if you include Baltimore in the area).

I’ve maintained many treasured friendships over the years and, thanks to my Parkinson’s Support Group and my bridge groups, I’ve acquired new friends.

My involvement in the last decade with the Indian Subcontinent has given me a wealth of new friends and a welcome exposure to other cultures, My Nepali and Bangladeshi friends are doing well Those who have made it to the U.S. are typically hard-working immigrants, often holding down at last two jobs and balancing the need to build a new life here with the desire to help family members back home.

Last week's Parkinson's news on the web

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Here’s a rundown on the major PD treatment stories reported on the internet or other news sources this past week:

Leukemia Drug Gleevec is being studied to see if it can help preserve the neurons that are affected during PD. Researchers at the University of Texas Health Science Center in San Antonio have reported, based on a three-year study with mice, that the drug Gleevec, which is used to treat chronic myeloid leukemia, might show down the progression of Parkinson’s. The study with mice showed that Gleevec helped PD by clearing up the proteins that accumulate and destroy brain cells. Gleevec, however, doesn’t penetrate the brain tissue as well as researchers would like. But they are hopeful that other drugs in the same class will work with Parkinson’s.

As with virtually all reports on current research like this, the report concludes: “'Use of the drug for Parkinson's in humans is still years away.”
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Botox, however, IS being used with humans now and it shows promise for helping people with Parkinson’s by releasing the grip of muscle spasms, tremors, and pain. Botox is usually used cosmetically to treat wrinkles. But at the Muhammad Ali Parkinson’s Center, patients with PD and other muscular disorders get multiple targeted injection of botulism toxin (botox) guided by electro myography. The botox injections relax tight and spastic muscles.

Dr. Guillermo Moguel-Cobos, MD, a neurologist at the Muhammad Ali Parkinson Center Barrow Neurological Institute, said the botox takes about seven days for it to work.
He added, "The Botox, what it does is it goes into the nerve terminals and then makes those nerve terminals fire less, and by firing less the muscles or the limbs return to their original or more normal position”

On average, the botox injections last for about three months. Another round of treatment is then needed. The treatment works best if combined with physical therapy. A therapist can work with the patient to strengthen the newly loosened muscles.

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GaitAid, a training device that gives movement feedback , has been shown to improve walking for a variety of neurological patients, including stroke, cerebral palsy, and multiple sclerosis, but it seems to work best with those with Parkinson’s. The device apparently has been used for a couple of years but the news reports that came up on the web this past week were the first I’d heard..
The GaitAid device includes special glasses and/or goggles worn over the eyes and headphones which output visual and audio cues. The patient is given a target for each walking step and feedback on their movement. With daily 20 minute practice sessions, patients re-learn to walk better with more confidence and balance.

“The GaitAid isn't right for everyone.", says Prof. Baram, inventor of the device. "Patient's need to be cognitively intact and not be wheelchair bound. Motivation, persistence and caregiver support are crucial for success.

"Here’s a description from the GaitAid website:

“The GaitAid, a portable home-use device, provides an alternative means to sensing and balancing the walking body. It includes glasses and headphones which display an image super-imposed on the real environment and plays a sound for every step.
The idea is to give the brain additional sensory input through sight and sound which establishes a clear sense of timing for walking, a target for each step, and feedback that the body has moved.

The GaitAid can be used as a walking aid by clipping the control unit onto the pants and wearing only the headphones.”
See http://www.gaitaidmedical.net/parkinsons.html

GaitAid is not cheap. It costs $1995 (including shipment) or $185.00 per month for 12 months (total: $2220.00). I looked for reviews and the only ones I found were positive.

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DaTscan, an imaging technique that captures detailed images of the brain, including areas affected by PD, has been approved by the FDA. The Michael J. Fox Foundation applauded the approval, noting that this is the first time the FDA has approved an imaging agent to aid in assessing degenerative movement disorders such as Parkinson’s.

DaTscan already is in use in 14 U.S. medical centers as part of the Foundation’s “landmark clinical study” – Parkinson’s Progression Markers Imitative (PPMI) – seeking biomarkers of PD. With DaTscan, for the first time we have an objective test to help confirm a clinical diagnosis of Parkinson’s, the Foundation said. It added:

“DaTscan represents a major step forward in enabling timely initiation of appropriate treatment and improved disease management, which contribute to greater quality of life and better long-lasting treatment."

This week's research report: CoQ -10

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This is in reply to a posted comment by Hans asking about taking CoQ-10 for Parkinson's. When I first was diagnosed with Parkinson's, I researched this and decided to gamble on taking it in the large dose of 1,200 mg a day that is generally cited as having the potential to slow the progress of the disease.

I researched it again just now and found the same results. Preliminary studies indicated that a high dose of CoQ-10 might slow the progression of Parkinson's.
The initial study was conducted in 2002 and was led by Clifford Shults, M.D., of the University of California, San Diego (UCSD) School of Medicine. It looked at a total of 80 PD patients at 10 centers across the country to determine if coenzyme Q10 is safe and if it can slow the rate of functional decline. The study was funded by the National Institute of Neurological Disorders and Stroke (NINDS).

"This trial suggested that coenzyme Q10 can slow the rate of deterioration in Parkinson's disease," Dr. Shults said. "However, before the compound is used widely, the results need to be confirmed in larger groups of patients."

A subsequent study tested the efficacy of different doses of CoQ-10. The results of this study suggest that doses as high as 1,200 mg/day are safe and may be more effective than lower doses.

The researchers on this study cautioned that it involved only a relatively small number of people, all of whom had been diagnosed for less than 5 years. They warned against taking CoQ-10 until a larger, more definitive study is conducted. They also warned that CoQ-10 is not a prescribed medication and therefore isn't tested by the FDA and that therefore what's sold in stores and online may not contain the promised dosage. They also noted that CoQ-10 at the higher dosages is relatively costly when taken over a long time and that the results of the study of people with less that five years of PD might not extend to those with a longer history or to those who have not yet been diagnosed.

But many people with PD have decided, like me, not to wait for the results of later studies and to go ahead with the 1200 mg dosage. (Usually in stores, the maximum dosage you can find is 400 mg, which means 3 pills a day. I've found that the Puritan's Pride website offers a 600 mg pill at a good price.)

Other reputable medical websites generally make the same observations about CoQ-10 and Parkinson's – promising evidence that it can slow down the progression but wait for results of later and more definitive studies. Those of us who have decided not to wait, of course have no way of telling whether it’s helping slow down the progression.

I’ve told my neurologist about my taking the 1200 mg of CoQ-10 each day and he didn’t raise any objection.

January 13, 2011

My Parkinson's Week (4) -- Ambien vs. 5-HTP, progress on incontinence

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Here's a rundown on the major PD happenings of the past week:

Ambien vs. 5-HTP

One night last week I ran into a technical glitch on the computer that had me panicked and working until 2 a.m. to come up with a solution. As a recovering alcoholic I should know better, but I decided to try an ambien at bedtime to assure a good night's sleep. I did sleep for a solid 8 hours but the next day I felt terrible -- groggy, mildly depressed, apathetic. This even continued, although lessened, into the next day. I gladly returned to my regular bedtime 100 mg 5-HTP. No serious side effects have been found with 5-HTP.

Contrast this with the list of warnings agreed to by Lunesta (ambien) and the FDA and recited in the Lunesta commercial you often see on TV:

http://www.youtube.com/watch?v=U7a6y7G61J0

Here's a funny spoof:

http://www.youtube.com/watch?v=5vRDEyYR68A&feature=player_embedded

More Incontinence Training

I had another training session at Georgetown University Hospital on the incontinence exercises I described in earlier posts ( ) I was doing fine on the basic Kegel exercises, but I found out that I'd been doing the "transverse abdominal exercise" all wrong. It took all of the scheduled hour for me to get the hang of how to do this exercise. We found that, for me, trying the exercise lying down just didn't work. So now I do it both sitting and standing. It requires (1) taking a deep in-breath,inhaling up (raise the body), not out, (2) slowly letting it out while pulling in your belly button and stomach as though you were tightening your belt, (3) at the same time tightening your pelvic floor muscles (Kegel exercise, and (4) doing this exhale exercise to a count of five.

It's tough, at least for me, to learn this without the help of a trained physical therapist.

But it does produce results. As I reported earlier, the basic Kegel exercises almost immediately reduced my nighttime trips to the bathroom from 3 or 4 per night to one. Now, combining the new exercise with the Kegel, I've found that in the past week I've been able to sit through a two-hour-plus movie without a rest room break and a similarly long play.

Lisa, my physical therapist, also is encouraging me to extend the time interval between bathroom visits during the day to at least an hour or longer. And then gradually increase the interval. This is to reprogram the mind not to give in immediately when the urinary urge first arises.

Meditation and 5-HTP

My bedtime 5-HTP combined with meditation when I wake for a bathroom break at 4 a.m.
has resulted in my looking forward to the 4 a.m. wakefulness as one of my favorite times of the day. Previously I had viewed this as a time of anxious concern about whether I could get back to sleep. Now I meditate for anywhere from 30 minutes to an hour, usually, but a couple of times the interval extended to nearly 2 hours. I count this meditation time as the equivalent of sleep time. Then I go back to bed and easily fall back to sleep for another couple of hours.

Another good week.

January 1, 2011

WebMD warning on abuse of drugs and supplements

Health
charter maldriverna
 WebMD is one of the best web site for medical and health  information IMHO. I've signed up for their daily e-mailings. I look only at the lead item and click on it only when it's of interest. This morning's provides a brief slide show on the most commonly abused OTC and prescription drugs. See:

  http://www.webmd.com/drug-medication/slideshow-commonly-abused-drugs?ecd=wnl_day_010111

As a recovering alcoholic with over 30 years of sobriety, you'd think I'd know better but I didn't and  came close to becoming addicted to Ambien and Tylenol PM which I started using for jet lag in my travels to Nepal but then began using on a more frequent basis.  This is something we all need to be cautious about.

A simple answer to the old question "Did I take my medication?"

Health
charter maldriverna

Like many of us with Parkinson's, I'm taking my meds four times a day - first thing in the morning, before lunch, before supper, and last thing at night.  My short term memory has always been lousy and aging hasn't helped it.  As a result, I often can't remember whether I'd taken my pills at the designated time.

I've tried various ways of dealing with this.  Most recently  I bought a small tabletop clock that announces in a loud voice that it's time to take the meds.  I've found this an irritating interruption and it drives my housemate crazy when I'm not at home to turn the thing off. I keep the clock on my desk and if  I'm deeply involved in a project, I can shut the alarm off and forget I did it.

Last week inspiration struck.  I now keep in the bathroom near the cabinet with the pills four post-em notes, each of which designates a pill time.  When I get up in the morning, I see a note posted under the cabinet that says "wake-up pill." I take the pill, take down the note, and put up the note that says "11 a.m. pill."

So far this works great.  It of course doesn't cover the occasions when I'm out of the house at a  pill-taking time.  But usually I'm fairly good about remembering to take my pocket-size pill box with me.  Since I keep it in the same pocket with my car keys and handkerchief, I'm usually reminded that it's there.

Just to show that no system is fool proof with this fool, this morning I took advantage of the unusually mild weather for January 1 in Washington, and spent a couple of hours in the late morning cleaning up the garden.
I then had lunch, after which I went to the bathroom and saw the "11 a.m." note. In my meeting with my neurologist last week, I asked what I should do in this situation -- just skip the bill or take it after the meal.  He said I should take the pill but wait 45 minutes to an hour after the meal.

My Parkinson's WeeK -- Happy Old Year!

Health
charter maldriverna

This week, the last week of 2010, marks the end of my first full year with Parkinson's (or, more accurately, with a diagnosis of Parkinson's)  I realize now that I'd had many of the symptoms of Parkinson's for several years but I wasn't diagnosed until September 2009.

I've concluded that this past year may well have been the best of my 81 years.  I'll be doing a blog posting in the next day or two detailing the reasons why my first calendar year of diagnosed PD has also been one of my best.

Last week was again marked by testing different ways of handling the 4-5 a.m. wakefulness.  As I've noted before, until 2 weeks ago, I was getting up 3 or 4 times a night to pee and I could fairly easily resume my sleep after each outing except for the last one at 4 or 5 in the morning. Thanks to the incontinence training program I'm now midway through, I've only been getting up once a night and that's usually between 4 and 5; more often than not, I continue to have trouble getting back to sleep at that hour.

I've also mentioned before that frequently I have difficulty getting back to sleep because on awakening I'm deluged with a flood of ideas for solving problems or undertaking new ventures. This unique experience has occurred only since I started using the over-the-counter supplement 5-HTP to deal with the PD-related depression, insomnia, and incontinence. While I benefit from the idea bombardment, I don't like it if, as a result, I get only 4 or 5 hours sleep.

This past week I've solidified my early a.m. practice of meditation as a way of dealing with this.  My new year started off by my waking at 5 a.m. (even though I hadn't gone to bed until 1 a.m. because I'd been trying to resolve a computer glitch).I  got up and, after using the bathroom, I sat in the straight-backed chair I keep in the bedroom.  This morning I was getting a particularly strong influx of ideas that kept interrupting my meditation.  But I stuck with it; I'd let the ideas register but then I would  pushing them gently off center stage  and resume the meditation. I was surprised when I finished to find that I'd been at it for 1 1/2 hours.  I regard an hour spent meditating as about the equivalent of an hour's sleep, so I don't get anxious about the loss of sleep when I'm up meditating. This morning after the 90 minutes of meditating, I got up, checked my e-mails, and then decided to get back in bed where I  logged in 90 more minutes of sleep.

So the New Year is off to a good start.  We'll see what it brings.
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