July 28, 2016

Could 5-HTP Be Even More of a Wonder Drug than I'd Thought?

I started this blog shortly after I was diagnosed with Parkinson's disease (PD) in the fall of 2009. The title I picked for the blog was "Parkinson's and 5-HTP." I intended to use the blog to tout this wonder drug for alleviating the major non-motor symptoms of Parkinson's.

5-HTP is a dietary supplement that can be bought over-the-counter without a prescription. I had used it to combat the insomnia I experienced during my extensive travels to Nepal and elsewhere from 2001 to 2008. As I started researching to learn more about PD, I found that the three most common non-motor side effects of PD ere insomnia, constipation, and depression. From my experience using 5-HTP during my travels, I knew that it helped me deal with two of those three symptoms.

After talking it over with my neurologist and with his approval, I started taking 5-HTP every night at bedtime. I found that it definitely helped with the insomnia and constipation I’d been experiencing. I'm usually not troubled by depression, but I did sense that the supplement was making my usual good mood a bit more euphoric.    

I couldn't find anything in the medical literature about using 5-HTP to help people with PD deal with these issues. So I started this blog mainly to let others know about this wonder drug.

Others with Parkinson's tried 5-HTP as a result of my blog posts. A few found that it helped alleviate constipation. But no one reported that it helped with insomnia, mood, or anything else. Later, I began having my own reservations about this wonder drug when it resulted in my ending up in the emergency room at Sibley Hospital on two occasions because it caused spikes in my blood pressure that had me close to fainting.

So I stopped advocating 5-HTP for use by others. But I continued posting reports on my own experience.

July 22, 2016

Using 5-HTP to Forestall My Orthostatic Hypotension

I use contact lens cases like the one shown above to carry essential pills in my pants pockets when I go out of the house. Usually I take two cases. One has a supply of my carbidopa/levodopa pills, the key medication for treating Parkinson's disease (PD). I take two of these pills every three hours, so I usually put at least four pills in the contact lens case.

The second case, shown above, epitomizes what is probably the most troubling issue for me in dealing with my Parkinson's disease.

The red pill at the top is nifedipine, prescribed to help me deal with the occasions when I get an unusually high spike in my blood pressure (BP). The spikes occur when the old pill of carbidopa/levodopa is wearing off and the new one hasn't yet kicked in. Usually the spikes are relatively small and they fade away within a half hour. When the systolic (upper) number climbs above 190 and doesn't begin heading down after about five minutes, I break open a nifedipine pill and take part of it. I have found that a full nifedipine pill works too well for me and can bring the systolic reading too low.

The bottom half of the contact lens case contains some table salt and a salt tablet, which I use when confronted with the opposite problem -- the sharp BP drop caused by my orthostatic hypotension. More about that shortly.

Some days my problem is systolic BP readings well above 200. On other days, the problem is a sudden drop of more than 30 points in my BP. Sometimes I can have the extreme ups and downs on the same day. How to deal with this double-edged threat has been a uniquely troublesome issue that I've discussed often on my blog.

Which brings us to the occasion that prompted this post. I had one of my regular meetings this past week with the doctor I've consulted on BP issues for about ten years. This time I brought up a new idea I've had now that I have resumed using 5-HTP, the over-the-counter serotonin-boosting supplement that may well head my list of most-discussed blog topics.

But before getting to that, here is...

A  Primer on OH
Orthostatic hypotension (OH) is a chronic, debilitating illness that is difficult to treat. It is marked by a sharp drop in blood pressure that often occurs when a person gets up from bed or from a chair, causing dizziness or even loss of consciousness. Doctors define OH as a drop of 20mm Hg in systolic blood pressure (the top number in a BP reading), or a drop of 10mm in diastolic pressure (bottom number) within three minutes after standing up.

If you feel a little dizzy when you first stand up, but the feeling passes quickly, you probably don’t have the condition. However, if your BP continues to drop after a minute or more of standing, OH could be the problem. Accurately identifying the problem can be cumbersome; you need to know what your BP was lying down or sitting, and you need the BP reading when you stand, too.

OH and Parkinson's
Symptoms of OH include lightheadedness, dizziness, weakness, difficulty thinking, headache, and feeling faint.

The condition can put people with PD at risk of fainting, losing balance, falling and being injured. Estimates of the prevalence of OH among people with Parkinson's vary, but 30% seems typical.

Both Parkinson's itself -- and the medications used treat it -- can contribute to OH. Specifically, the PD meds that can cause OH include carbidopa/levodopa (Sinemet), bromocriptine (Parlodel), ropinirole (Requip), and pramipexole (Mirapex).

Other medications can also contribute to OH, such as high blood pressure meds (including calcium-channel blockers), certain antidepressants, drugs that treat urinary problems, and drugs like Viagra for erectile dysfunction.

July 20, 2016

Health, Parents, and Parkinson’s Update by Leon Paparella

The guest post below by Leon Paparella is the first in what I hope will be a a series of posts by people I feel have an interesting and/or inspiring story to tell.

Leon is the therapist who leads the Parkinson's disease support group meetings I've been attending since shortly after my diagnosis in 2009. He is a talented group therapist, but his effectiveness is greatly enhanced because we know that Leon -- who looks to be in excellent health -- was diagnosed with PD in 1987 when he was age 43. That's almost 30 years ago.

Two years ago, I reported on an interview I had with Leon. But here we are rewarded with Leon's own open and honest sharing of his struggles to deal with both his Parkinson's and his over-protective parents. Leon's reflections were occasioned by the death earlier this year of his mother at age 96. 

Here's a picture of Leon, with his "guest post" immediately below:

In my nuclear Italian-American family, I am the youngest of two children and the only son, my sister being two-and-a-half years older. Throughout my childhood and early life I seemed to have been the focus of excessive concern and worry. Over-protective would be an apt description of my parents' attention to my well-being. I resented this.

An important early-life experience exemplifies and shaped my response to health concerns. It was my mother’s extreme reaction (over-emotional) to a baseball accident when I was eight years old. In my mind, the trauma of the accident will always be with me, both physically and psychologically. From it (besides losing two front teeth), I learned to hide, deny and minimize any and all injuries and sickness in order to counteract my mother’s anticipated fear and reactions.

In general, my family was very health conscious. My father, a physical education teacher, was an advocate (before it was popular) of natural food diets, and he strongly reinforced my athletic pursuits and healthy living. My mother was an excellent, health-conscious cook.

After college, intensely striving toward independence, I left home, moved to DC, got married and divorced, finished graduate school and began to establish my professional career. There were many hurdles to face along the way, for which I sought psychotherapy. Among them were authority issues and the Vietnam war, and psychosocial concerns related to marriage failure and depression. 

July 15, 2016

Comments on Exercise DVDs for Seniors and People with Parkinson's from My Terrific PT Adviser

Fitness DVDs are a multimillion dollar business. Those targeting the elderly and patients with specific diseases like Parkinson's are a major part of the market.

blog po

“There are tons of DVDs out there, 20 percent of them are purchased by older adults, and with few exceptions there is no evidence that they work,” said Edward McAuley, professor of kinesiology and community health at the University of Illinois.

McAuley led a new study to test the efficacy of a home-based DVD exercise program for people 65 and older. His results appear in the Journals of Gerontology Series A: Biological Sciences and Medical Sciences.

I've acquired several DVDs of exercise programs for people with Parkinson's and for the elderly. Their seldom  opened plastic cases have been stacked up by my TV for a couple of  years.

Thanks to my neighborhood listserv, I really lucked out and found a terrific physical therapist who lives just a block away.  We've worked together for several months. I  want to share her exceptional guidance on making the best use of three of my fitness DVDs.

Tai chi is increasingly touted as a particularly good exercise program for those of us with Parkinson's. Here are two DVDs I bought after seeing good reviews:

Here's a fitness DVD, designed for people with Parkinson's:

Before you begin a DVD exercise regimen, experts recommend that you work with a physical therapist or other fitness professional to individualize your program based on your own symptoms and abilities. That advice is especially important for people with Parkinson's, since everybody's symptoms are different, and since every day is unique.

July 13, 2016

Here's More Info on the PD Remission that's Been Attributed to the Patient's Use of Meditation

Needless to say, I was intrigued by the news report I summarized in yesterday's post about a 78-year-old man who is in remission from Parkinson's disease, reportedly as a result of his many years practicing meditation.

I managed to find and read the full report, and now I'm even more intrigued. The patient "has been off all anti-Parkinsonian pharmacotherapy since 2012 with no clear symptoms or signs of PD."

This passage describes the patient's meditation practice: 
​T​he patient meditates for at least 30 minutes daily using a practice called "centering prayer," which he learned during his brief time as a postulate in a Franciscan monastery 37 years ago. In this technique, he focuses his mind on a single religious word to reach a meditative state. He states that he feels less "PD like" when he meditates, so he began to reinvest energy in meditation practice after his PD onset.

Critics might well ask this question: If meditating somehow created a “cure,” why did this man come down with PD in the first place, in light of his 21 years of meditation BEFORE his diagnosis in 2000?

The report explains​:
​W​e are unable to offer insight as to why the patient presented with PD in the face of such possible benefits of long-term meditation practice; however, intensity of engagement with the practice likely increased after the diagnosis, and he may have benefited from this more intensive practice. Regardless of the role of the patient's meditation, this case demonstrates the possibility of PD symptom remission.​

I was also interested in the report’s mention of other instances of putative PD remission. Unfortunately, the technical language made much of the discussion incomprehensible to me. For example:

July 11, 2016

Did This Patient's Long History of Meditation Help in His Remission of Parkinson's Disease?

This morning while browsing through my daily Google alert for news about Parkinson's disease, I came across this reference:
A potential case of remission of Parkinson's disease
That phrase grabbed my attention. The link I then clicked referred to a PubMed report on the case of a 78-year-old male who, 16 years ago, was diagnosed with Parkinson's disease by a neurologist. Initially, this patient experienced left hand tremor, stooping posture, shuffling gait, and frequent falls. After three more years, he showed bilateral motor symptoms.

But since 2012, the man's symptoms have mostly disappeared, and he has stopped taking PD meds. The accuracy of the initial Parkinson's diagnosis is supported by appropriate clinical presentation, history of positive response to Sinemet (carbidopa levodopa), and an abnormal SPECT DaTscan.

This case certainly suggests that remission of PD symptoms is possible in some patients. The authors thought that the man's long history of meditating might have contributed to his improvement, since meditation has been shown to release dopamine in the striatum.

July 9, 2016

Ladies and Gentlemen... the Dancing Queen!

I love music and I love dancing. One of my big regrets is that I was born a klutz... and a particularly clumsy, self-conscious one.

Dance therapy for people with Parkinson's has recently become very popular. But I know it would not work for me.

Nonetheless, when I'm alone in my office or on the back porch, music can get me up and moving... even though I embarrass myself. Here's a recent example I permitted (with much trepidation) to have captured on my cell phone:

I have several CDs that get me up and moving. Naturally, this one is a winner:

Believe it or not, I "dance" to "Don't Cry for Me, Argentina."

Oh how I wished I could have had gotten out on the floor at the Sunday tea dances at the Lost and Found after I came out in 1978. But that 49-year-old klutz never had the nerve. But now I can... on my back porch.

Classical music can get me up and moving, too. "Rach 2" will do it.

Conducting Wagner's "Tannhauser Overture" can give me as good a workout as dancing to Diana Ross's "Touch Me in the Morning."

July 8, 2016

Prelude to the Dancing Queen: Exercise for Parkinson’s Disease

Last month, I wrote about a member of my Parkinson's support group – someone we haven’t seen for several months – who showed up again… this time in a wheelchair pushed by his wife. He couldn’t use his arms or legs, and he didn’t seem to know where he was.

We were stunned, seeing for the first time someone with Parkinson’s disease (PD) so completely disabled. We spent most of the meeting sharing our feelings, and thinking "that could be me."

I’d already been worrying that my PD – which has progressed pretty slowly so far -- might be on the verge of accelerating. I was “officially” diagnosed seven years ago, but I’m sure that diagnosis was several years late.

I know that PD is highly idiosyncratic; people experience symptoms and respond to medications in very different ways. But from what I've seen and read about others with Parkinson's, the downhill slide often speeds up as one approaches the ten-year mark.

Then a surprise attack of shingles this spring added to my health concerns.

So I decided to intensify my efforts to fight my PD. But how?

Second only to carbidopa levodopa, exercise is the best medicine for combating PD. For some, like John Pepper exercise may work so well that they no longer need to take the medication.

July 7, 2016

Lewy Body Dementia: Often Misdiagnosed as Alzheimer's or Parkinson's

Two years ago when the much-loved actor Robin Williams took his own life, initial reports focused on his long struggle with depression and substance abuse as a likely cause.

A year later, however, his widow Susan clarified the record; his death, she said, was a result of the debilitating brain disease known as Lewy body dementia (LBD).

Why was that diagnosis not made earlier? After all, LBD is the second most common form of progressive dementia, affecting around 1.3 million Americans, mostly age 65+.

According to the Lewy Body Dementia Association, it takes an average of three doctors and more than 18 months to correctly diagnose LPD. Most doctors fail to recognize the signs of LBD, since the symptoms are very similar to those of Alzheimer's disease and Parkinson's disease.

An examination of Williams's brain tissue revealed the presence of "diffuse Lewy body dementia." Williams's doctors thought that LBD "was a critical factor that led to his suicide."  

Williams presumably had top-flight doctors, yet it took an autopsy to correctly diagnose the LBD. 

July 6, 2016

Elderly Patient Care: Deciding on Treatment Options

Last week, my friend Brian sent me a link to a blog post, Yes or No to Treatment: The Conundrum of Decision-Making When Elderly.

The blog – Gap Year After Sixty -- belongs to another friend, Sam Harrington, who stepped away from his medical practice to spend some time in Maine, writing. There’s a book in the works, perhaps titled “A Better Death” or perhaps "The Boomer's Guide to the Last Trip." 

Sam’s blog post is about the difficult subject of what to do when an elderly patient is offered a new treatment. Sam includes some technical concepts, like relative benefits vs. absolute benefits, and the number of patients needed to treat vs. the number of patients needed to harm. I found some of those explanations hard to follow. 

But the post also includes a good list of questions to ask the physician of an elderly patient. Sam explains:
Don’t allow your doctors to limit their consultation to the relative merits of their treatment plan. Instead, ask them the following questions:
  • If I were your mother or father, would you put me through it?
  • If I live longer because of the treatment, will the quality of my life be reduced?
  • If I choose the treatment path, am I more or less likely to lose control?
  • Am I more or less likely to end up in an ICU?
  • Am I more or less likely to be in pain?
  • Is doing nothing reasonable?
Focusing only on the positive outcomes of a therapy versus no therapy limits one’s understanding of end-of-life issues to relative comparisons but ignores the absolute bigger picture of success without treatment, failures with treatment, and the inevitability of death coming for all.
 All good questions.

July 1, 2016

OTC Painkillers: Conflicting and Confusing Advice

More than 29 million Americans regularly use over-the-counter painkillers. The most common are:
  • NSAIDs (non-steroidal anti-inflammatory drugs).​ These drugs use ibuprofen and/or naproxen. The common brand names are Advil, Motrin and Aleve.
  • Acetaminophen. Tylenol is the leading brand name.

Conflicting Warnings
So which is safer and more effective?​ As usual, there are pros and cons for both choices. Here are two recent examples:
  • Studies reviewed by an FDA advisory panel last year found mounting evidence that NSAIDs increase the risk of heart attack, stroke, and heart failure in people with or without heart disease. Increased risk can occur as early as the first weeks of taking the drug, and the risk rises with higher doses and extended usage.​ See http://1.usa.gov/29cuFEM.
  • In light of this FDA report, it might seem that using Tylenol would be a wiser choice. But a 2015 review in the British Medical Journal concluded that the drug simply doesn't help with back pain. In fact, Tylenol may hurt more than it helps. Patients taking acetaminophen were almost four times more likely to have abnormal results in liver function tests than those taking a placebo. This report suggests patients consider NSAIDs, which appear to be more effective for back pain because they also ease inflammation.

​​Pill-​Free Option Is My Choice
I've been using OTC pills for back pain off and on for years. Until a month ago, I was taking Advil twice a day. But I've been making more of an effort to use physical therapy for my Parkinson's, and I have also incorporated some core strength exercises that have considerably eased the back pain.  Given the risks that come with any of the OTC pain pills, I've decided I can tolerate the low level of pain that continues.

I'll discuss my exercises and physical therapy in future posts.