A Final Note from Barb

Well, this note is my last for our blog. I stopped the Mucuna…the Amino Acid Therapy…on February 8th. I know that it works for many people, so I want to clarify my problems with it. First, I was very motivated; however, I did not have any family support in terms of someone checking on me.  Our Parkinson’s support group was a great support to me, but it was not enough.  I was also experiencing a lot of personal stress; I have had this stress for years, but simply decided that I would go ahead and try the Mucuna. In retrospect, it was not a good idea.

Then, I was among 5 per cent of patients who get a Tyramine reaction. This reaction causes blood pressure spikes. I would have a hypertensive crisis almost daily. This was an exhausting experience; my blood pressure would spike to 280/120, then, in around 30 minutes it would go down. I was very sensitive. This problem persisted.

Third, my energy level was very low. I napped from 2-5 hours daily. I could not handle the exhaustion. The tiredness and mild nausea, along with the hypertension, were overwhelming.

Fourth, I was spilling a lot of Mucuna in my urine. I could not seem to get it balanced. I had a final urine test on February 1st, and, at this time, I do not know if the situation had improved.  The spilling of the Mucuna was puzzling to me, and it is something on which I will follow up.

My last concern was my gut problem, which I think was getting worse. I had more abdominal pain on the amino acids. I think I need to see a gastroenterologist, and I plan to do so soon. However, my gut is a little better now that I am off the amino acids..

So I see this as a side trip on my Parkinson’s journey. I am glad that I took it. I think the amino acid therapy works for many people, but it was not for me. I am sad that I could not handle all of the difficulties.  I do not see myself as a quitter, but I had to listen to my body.

Thank you, Barbara Roy

A note to readers from the support group:

Dopamine fluctuations such as those described by Barb (“spilling a lot of Mucuna in my urine”) are common. The body is diverting dopamine to create melanin, which is a competing process. The remedy is taking the amino acid Tyrosine which is needed by approximately 80% of people on the protocol. This is a typical part of the protocol and no cause for alarm. On the other hand, Barb’s reaction to Tyramine was challenging, although exceedingly rare as she notes. None of us have experienced it. The tyramine reaction is almost always controllable through dietary interventions (avoiding tyramine rich foods).  Finally, in our experience it takes six months, more or less, to reach equilibrium with the protocol although we note that we did not necessarily feel bad for that length of time. In fact, all of us felt significantly better within a few months of beginning the protocol. Medical practitioners typically say that it takes 4-9 months of adjustments to reach optimized function.

Barb continues to join our group meetings and we continue to support her.

 

Advertisements

What does it mean to be “on the clock” with amino acid therapy?

For me, every day is an “on the clock” day with amino acid therapy. The protocol works well for me, as long as I take my supplements on time, every time. Otherwise, I suffer from nausea.  I tend to feel nauseous before I lose movement, which is not the case for everyone. Sometimes, I just want a day off. Instead, I carry a “medi-bag” filled with pre-measured supplements and foods with which to take them. The bag goes with me everywhere. It allows me to be mobile, anywhere, any time. Trouble is: I’m always taking medicine, stealing moments to eat a little here and there. (Sometimes, I feel like I’m in the eye of a storm, calmly taking medicine while activity whirls around me.) Next week, my dog will be shown in a major dog show. It’s a four-day show, out-of-state, in an exceptionally large convention center. Show rings, bathrooms, and grooming set-ups are at a distance. A lot of walking is expected. Ring times rarely match supplement times. But, I’m going to be there. I’m going to participate. The amino acid protocol allows me to dance around “normal.” I’m on the clock, but I’m also on the floor, proudly walking my beautiful boy to the ring–like all the other owners. I need to remember to be thankful.

Submitted by Lynne

Is there any hope for those of us with Parkinson’s disease?

I am tired of the negative, downbeat way that Parkinson’s disease (PD) is portrayed. Let’s take a look at the messages we (people with Parkinson’s) hear and the images we see.

Doctors tell us we will become wheelchair-bound, demented, depressed individuals within a few years. While drug commercials are ubiquitous on television, no miracle cure is touted for PD. In fact, I have never seen an ad for Sinemet, the most prescribed drug for Parkinson’s. (My guess is that side effects are too common, weakening the hype.) The only television commercial about PD that I have observed shows people having hallucinations, their world a blurry grey. No drug therapy is offered, just a website to learn more. I have noticed that Michael J. Fox, famous spokesman for PD, often displays Dyskinesia (uncontrollable movement), a side effect of Sinemet on televised venues. Not long ago, a member of our support group sent me an electronic version of the Parkinson’s News Today Weekly Digest. Eight of ten articles, while informative, suggest calamity.  Article titles include: Parkinson’s Patients on Dopamine Replacement Should be Monitored for Psychosis, Study Links Parkinson Patient Depression to Deterioration of White Matter in their Brains, and Weight Loss Linked to Worse Outcomes in Parkinson’s Patients.

PD is incurable, progressive, and chronic. We get that. Yet, we can retain (and sometimes improve) function, stamina, and humor, especially with the support of amino acid therapy. We can slow progression of disease by avoiding non –therapeutic, vitamin B6-damaging Carbidopa; a compound in Sinemet. The posts on this blog attest to this possibility. Certainly, the protocol is complicated and individualized; programs are similar, but individual needs vary.  Sure, it takes time and persistence to reach one’s optimum dose. Unquestionably, the course is expensive and it’s rarely covered by health insurance plans. But, it does work. Let’s stop the futile way this disease is depicted. A diagnosis of PD does not have to be a death sentence. I, for one, can benefit from optimism and hopefulness from those around me.

Submitted by Lynne

Memory as Touchstone: Why do I keep going with amino acid therapy?

Hello, I am Mike C., another member of the Parkinson’s Support Group. I started the amino acids therapy for Parkinson’s disease (PD) 15 months ago. I still have Parkinson’s. I still experience bothersome PD symptoms at times. Why do I keep going with the therapy?

In a word: memory.

I remember what living with PD felt like in September 2016 and it is clear that I am doing much better now. However, memory is a funny thing—science increasingly shows that it is malleable, perpetually shifting and adapting to our environment.

I recently constructed a before/after table to help me hold on to the memory of Parkinson’s before amino acid therapy. I turn to it when I feel discouraged about current struggles. Here are a few things from my touchstone table.

Before: Tremors were so distracting that it was difficult to engage in conversations longer than a few minutes. I consistently felt like I was not able to participate fully in work meetings.

After: Tremors are now an occasional feature and I am almost always able to more fully engage.

Before: I used dictation software 90% of the time for writing. I was able to type “normally” with my fingers for only a short time after taking my largest dose of Sinemet of the day. Some days I was not able to type at all.

After: I rarely use dictation software. I am usually able to type normally at all times of the day.

Before: My voice was noticeably weak and hoarse most of the time.

After: My voice is significantly better although not what it once was. It is sometimes weak and hoarse.

Before: I could not scramble an egg with my left hand (my dominant hand and the one most impacted by Parkinson’s). I could barely scramble one with my right hand.

After: I am able to scramble eggs with both hands! One hand at a time, of course.

Before: I would sometimes lose my balance while standing still in one place.

After: I rarely lose my balance.

I also checked in with my wife for her perceptions. She notices that my sense of smell has partially returned, I am not shuffling around as much, and that I am able to participate more in the life of the household (which includes a 12-year-old.) She also notes that my guitar playing is more fluid, appears to be less of a struggle, and sounds closer to the way it used to be.

Indeed, occasionally I even feel normal, whatever that means.

While we are still working to find the best dose for me, I am significantly more functional and feel better than I did 15 months ago when I was taking a low dose of Sinemet. For that, I am profoundly grateful.

 

 

What are the first weeks of amino acid therapy like?

Hello, Barb Roy reporting in. I think it has been three weeks since my last blog…..three weeks!!!

I have been on the new protocol for 6 weeks. I have had my share of difficulties. I am in the 5% of people who have a spike in their blood pressure (BP) as a reaction to changing levels of one amino acid, tyramine. Tyramine is displaced by mucuna and increases in the bloodstream. The tyramine causes BP to go up, spiking in some people. However, it does go down again in about 30 minutes. This BP change happened to me at least three to four times a week for the last 6 weeks. I am sensitive to foods, like wine, chocolate, processed meats, cheese, and beans.  I stay away from these foods to keep my tyramine reaction down.

Also, I am very sensitive to amino acids. My body gets acidic very easily. Dr. Oler is working with me to find the right balance of amino acids. In the early days, you can expect a lot of adjustment for your individual responses to the protocol.

On the positive side, I am beginning to notice minor changes. I am walking easier in my home. I still use a cane, but my gait and balance is improving. My handwriting is becoming more legible. I think my speech is improving a little also (and my support group members really notice a change for the better).  I am able to exercise almost daily. Well, I am going to stop for now. I will write more later.

 

 

Why is it so difficult to “live outside” the pharmaceutical box?

Living outside the pharmaceutical box can be demanding and expensive. There are no insurance companies or plans (that I know of) which pay for alternative treatment for Parkinson’s disease. Also, health care providers who support alternatives, like amino acid therapy, are hard to find. All too often, people with educational access and financial means, are more aware and able to take advantage of non-pharmaceutical options, than those with limited circumstances. I commonly say that “I spend my wealth on my health,” which is irksome, though, luckily for me, possible. Still, I’m miffed by paying for traditional drug insurance premiums, which I rarely utilize, while simultaneously spending hundreds per month–out of pocket–for dietary supplements. “Wellness” provisions of insurance plans seem limited to reimbursement for work-outs in the gym.

Recent events illustrate these challenges.  The U.S. President nominated a former drug company CEO for Director of the Department of Health and Human Services. His top goal: reduction in pharmaceutical drug prices. Also, CVS Pharmacies intend to purchase Aetna, the third largest insurance company in the U.S.. The merger aims to enable a one-stop, pharmaceutically-centered, healthcare shop. Then, a few days ago, my state’s attorney general declared cannabidiol hemp oil (CBD oil) illegal. CBD is a non-psychotropic cannabinoid found in marijuana or manufactured from industrial hemp (it doesn’t cause a “high.”) Potentially, it eases chronic pain, anxiety, nausea, tremor, and/or other ailments–drug-free. People, like me, who saw promise in this remedy, made a run on the product.

I do not want to argue against pharmaceutical drugs. Their utility is well-known. However, health care is meant to help heal all of us, in a myriad of ways, not to support the medical establishment or to enable drug companies. “We the people” can demand acceptance for health alternatives. It should be easier to live outside the pharmaceutical box.

 

How can amino acids help you recover from Parkinson’s disease?

Hello, this is John writing. I’m one of the founders of our Parkinson’s support group. On January 15th, 1997, at the age of 46, I was diagnosed with Parkinson’s disease.

I became aware of Amino Acid Therapy and Dr. Marty Hinz (lead researcher for the therapy) sometime in 2002. For the previous 5 years, I was engaged in a somewhat desperate search for a cure; or, at least an effective way to manage my symptoms which were intensifying monthly. My search took me into classical medical treatments, as well as to the lunatic fringe. I found Dr. Hinz’s approach to treating Parkinson’s both levelheaded and exciting. I began the protocol. Unfortunately, after a few weeks I began to experience severe nausea. Try as I might I couldn’t stop it, and as anyone who has been plagued with nausea knows, it is a real spirit killer. I had to stop. Apparently, this side effect affected many (if not most) of the people on the protocol as it was structured at that time. I was disappointed but not discouraged.

Let’s fast forward to 2012. I found an article about Dr. Hinz’s new insights which included a way to mitigate nausea. I immediately restarted the protocol and, sure enough, did not experience any nausea. It took about three and a half months to reach the right dosage where I was 90% free from Parkinson’s symptoms. By far and away this program is the most effective way to manage Parkinson’s symptoms that I have discovered. Once you arrive at the proper dosage almost all symptoms disappear.

I must tell you, though, that this program is not a cure. You depend on the amino acids every day, but compared to being crippled with Parkinson’s symptoms, it is an enormous freedom and relief. I have been on the “amino’s” for close to 5 years now and something interesting is beginning to happen. The assumption of this program is that the cause of Parkinson’s symptoms is nutritional deficiency. This theory seems to be accurate because I now need only about a half of the dosage I once needed. So, apparently the deficiency is being satisfied. Maybe one day the deficiency will be entirely satisfied and there will be no reason for the symptoms. Cross your fingers.

As I said before, amino acid therapy is the best program to manage the symptoms of Parkinson’s. Being free of symptoms allows me to think much more clearly and deeply. This is a wonderful thing. My personal work remains to find the cure for this disease. I continue to explore potential avenues for recovery: emotionally, psychologically, exercise physiologically, and through meditation, movement, prayer, and dance etc., etc. I believe it is possible to send the symptoms of Parkinson’s disease into permanent remission.  The amino acid therapy gives me a clear space from which to explore that possibility.