SCIENTIFIC STUDY vs. REAL TIME EXPERIENCE

E-MOVE, a research news service, has announced a study just released that confirms a relationship between Peripheral Neuropathy (PN) and Parkinson's Disease (PD).

Since Wally has suffered from Peripheral Neuropathy since 2001, I have found this study very interesting. In Wally's case, however, when he was first diagnosed, he was started on the agonist Bromocryptine alone rather than introduced to a dopamine replacement i.e. L-dopa or Sinemet or combination of an agonist and L-dopa as so often happens. He was diagnosed with PD in 2000. In the late fall of 2001, he didn't feel his leg resting against an electric heater (20 minutes) and suffered third degree burns as a result. The burn actually went down to the bone by the time I became aware of it. It was a miracle that this severe a wound healed, but what concerned us was the fact he never felt his leg burning and as the nerve cells regenerated still never felt any pain. The neurologist took him off the Bromocryptine and started him on Sinemet immediately.

In the study just released, the connection between PN and PD seems based on the patient's dosage of Sinemet. Perhaps more factors need to be worked into the study to figure out what happened to Wally. Still, it creates awareness of this real association for the first time. I thank Rob Bristol for bringing this to our attention on Facebook's PARKINSONS DISEASE AWARENESS GROUP page and have copied the report from the website news service for your reference.

Subject: Peripheral Neuropathy in PD

Date: 6/29/2010

Peripheral neuropathy is common in Parkinson’s disease, and is associated with greater levodopa intake, according to a new study.

Peripheral neuropathy (PN) was assessed in 58 randomly selected PD patients and 58 age- and sex-matched controls. PN was present in 55% of PD patients and 9% of controls (p<0.05). PN was symptomatic in 24 patients (41% of the entire sample). Comparing PD patients with PN to PD patients without PN, those with PN had similar duration of disease and time since diagnosis; greater disease severity; similar cobalamin levels; higher fasting homocysteine and methylmalonic acid; higher likelihood of using levodopa; and higher cumulative exposure to levodopa.

Severity of peripheral neuropathy was associated with greater levodopa intake and higher methylmalonic acid levels.
Elevated methylmalonic acid may lead to peripheral neuropathy, the authors note. MMA elevation can arise from cobalamin deficiency and from levodopa use. While they note they have not established a causal connection, the authors “suggest that L-dopa-induced elevations in MMA are responsible for the presence and severity of PN in IPD patients. We recommend screening for MMA levels in all PD patients receiving L-dopa to potentially identify patients with PN or at risk for PN.” They also suggest studies of cobalamin supplementation for patients taking levodopa.

Levodopa, methylmalonic acid, and
neuropathy in idiopathic Parkinson disease
C Toth, K Breithaupt, S Ge, Y Duan, JM Terris,
A Theissen, S Wiebe, DW Zochodne, O Suchowersky
Ann Neurol 2010;67:28-36
WEB SITE: Peripheral Neuropathy in PD

Henry McCambridge's Story: Being My Father's Caregiver

Today I am pleased to post an article from a member of our group who has volunteered to tell us about his experience caregiving for his father who has Parkinson's disease. Henry has given up his career to take care of his Dad. We tend to forget the many sacrifices many caregivers make for those they love. This is a touching and remarkable story. Bonnie

BEING MY FATHER'S CAREGIVER
My father has always been an active and outgoing man. However, he developed Parkinson's disease in his 70s. It started with a slight trembling of the hands but this gradually worsened over time with akinesia and dementia appearing in the later stages. The decline in health depressed my father. It was heartbreaking to see the most influential man in my life lose the ability to take care of himself.

Before my father fell sick with Parkinson's disease, I was a full-time paralegal living only a few blocks away from him. When the doctor informed my sister and I that our father may require a dedicated caregiver, I volunteered to quit my job as my sister lives in another city with a family of her own.

Once I moved in to my father’s house, the first thing that I did was clean out all the clutter so that he could not trip. I then made sure that all of his chairs had a comfortable backrest with strong armrests so that he could lift himself out of them. To make sure that my father would be able to contact me when I am not at home, I purchased a personal medical alarm system. Renovating the bathroom was a more daunting task. I replaced the traditional bathtub with a walk-in one that is equipped with a seat. I also installed railings on the wall next to the toilet and bathtub so that it would be easier for him to move around.

My father now takes a longer time to complete daily tasks, such as getting dressed and taking a shower. He often gets frustrated with himself and irritated at his reliance on me. Sometimes I too become impatient and try to rush him, but that is often counter-productive. I now learn to use humor to alleviate the frustration. When my father is struggling with a task, I will crack a joke so he will lighten up.

Now that my father is no longer able to drive, I have become his driver. We go on regular outings to the park and store so that he has a chance to get outside. I make sure to stay by his side during these excursions so that I can assist him with anything.

When taking care of my father first became my full-time job, I experienced a lot of stress due to the loss of my social life. Plus witnessing the deterioration of my father’s health is a heartbreaking process. To help alleviate this stress and to give the both of us a break, I hire a caregiver from the local clinic twice a month. This gives me a chance to go out with some friends. While I enjoy the time off, I must say that I am always anxious to get back home and see my dad. He will always be the most important role model in my life and nothing can change the love that I feel for him.

REFERENCES:
Terms:
http://www.medicinenet.com/parkinsons_disease/article.htm
Definition of Akinesia:
http://www.medterms.com/script/main/art.asp?articlekey=6988
Medic Alert Alarms:
http://www.directalert.ca/

CAUTION AND CARING

Today Wally's neurologist and I had a long discussion about what's happening with PD patients as their Parkinson's progresses.

He is reducing or removing Mirapex in his patients' treatment program because in addition to the compulsive and obsessive behavior that increases over time, he has found that Mirapex is contributing to a patient's "freezing," where the patient "locks up" or can't move. When he took the Mirapex away from one patient who was experiencing "freezing" at an alarming rate, the "freezing" stopped, almost immediately.

Different things can trigger "freezing" for a person with PD such as walking through a very narrow space or feeling crowded. It's not uncommon for "freezing" to occur while a patient is taking a bath. Looking back on such things, a person with a wacky sense of humor could write a comedy skit, but while you are faced with this dilemma, it is far from funny for both the patient and the caregiver.

Mirapex, like Permax before it, affects the circulation system and can erode the heart valve, so the patient may mimic symptoms of Diabetes where the limbs swell with edema and/or the skin becomes red and flaky and easily infected.

Wally also experienced Dystonia. It became so severe that he explained that he thought his body was going to explode when his muscles spasmed. Sometimes his feet faced each other when the contortion was severe. Removing Mirapex from his treatment has seen the end of his Dystonia.

The neurologist and I agreed that all drugs must be viewed with an eye on their toxicity. Everything including Sinemet at first seems to act like a miracle, but the basic effectiveness of any of the Dopamine replacement and enhancement drugs may only be within a five-year range. After that, increasing dosages enhances the side effects and augments toxic impact. Patients believe that the drugs are helping because there is the span of relief after receiving the drugs on schedule before the relief wears off and the patient is anxiously waiting for the next round of pills. This describes what happens to a person addicted to drugs, so that fallout cannot be dismissed with the use of these PD medicines as well.

As these results become more common in the medical field, don't be alarmed if your neurologist advises cutting back on meds rather than increasing them. A doctor's aim is still to try and give the PD patient the best quality of life possible, but it's becoming increasingly clear, more of the same meds are not the answer. Even meds to offset side effects of a drug program may lose their effectiveness and end up causing further problems. No one's sure because newer drugs are being released without long-term studies, thus the patients themselves become part of the experiment as PD progresses from person to person.

I wish I had answers for caregivers who are left feeling helpless as they watch their loved ones live with PD, and as one commented on our wall, the changes in the person she loves is driving her crazy. All of us who are caregivers understand her frustration and repressed anger.

What is the breaking point for the caregiver? Each is human, not superhuman, and what is demanded of caregivers becomes a superhuman expectation that few can meet. Even the strongest of the strong have breaking points. The neurologist repeated to me today, "None of this is your fault, so you must not blame yourself." But, we're talking about a person we love. Even if we rationally see that "it's not our fault," it's impossible to pretend it doesn't matter.