November 18, 2014

The Pros Offer Tips for PWPs and their Caregivers

An article in the October 4 edition of reviewed the presentations at a recent symposium for people with Parkinson’s (PWPs) and their caregivers. Doctors and other healthcare providers from the University of Florida’s Movement Disorder and Restoration Department addressed several hundred people at the event, sponsored by the National Parkinson Foundation.

Dealing with a Variety of Symptoms
First up was Ramon Rodriguez, MD, a neurologist specializing in Parkinson’s disease. He acknowledged that his audience’s doctors would certainly be treating their most common symptoms, like tremor, stiffness, gait and balance issues. As a result, he wanted to focus on several other important, bothersome non-motor problems that often accompany the disease.

Low blood pressure and neurogenic orthostatic hypotension (NOH) topped Rodriguez’s list. (These are issues I’ve been struggling with for months now, along with scary blood pressure spikes that typically hit as the levodopa wears off at the end of each pill cycle.)

Rodriguez made these points:
  • PD is an idiosyncratic disease which people experience individually. Therefore, PWPs must learn their own individual blood pressure (BP) thresholds, beyond which dizziness and fainting may occur.
  • Drinking lots of water—up to 64oz a day – helps regulate BP.
  • Eating salt (a remedy I use regularly to help treat hypotension) is very effective in raising BP. Said Rodriguez, “This may be contrary to a lot of doctors’ advice, but anything that comes in a can has high sodium content — so buy it and eat it.”
  • Comfortable compression stockings help regulate BP. They’re less risky than drugs.
  • Rodriguez urged listeners to discuss all BP drugs with their doctors – the drugs that raise AND lower pressure.
Constipation is a common non-motor PD symptom (and one I've managed effectively through the past years with the OTC supplement 5-HTP). Rodriguez suggested several remedies:
  • Water, the magic elixir
  • Fruits and vegetables to increase fiber
  • Metamucil
  • Prunce juice
  • Over-the-counter stool softeners
  • Gentle laxatives, like Milk of Magnesia
  • Prescription-only Lactulose if all else fails
Intractable urinary incontinence is an occasional problem for which Rodriguez offers only a single suggestion: trans-urethral IV Botox injections into the bladder wall.

Neuropathy (disease or dysfunction of one or more peripheral nerves, typically causing numbness, pain, or weakness) is a major complaint for PWPs. In a good article about PD and pain on the Parkinson’s Disease Foundation’s website, Jeffrey Wertheimer, Ph. D. writes: 
Up to 85 percent of people with Parkinson’s report pain as a troubling symptom. Some of these people experience pain as an early symptom of Parkinson’s, before their disease has even been diagnosed. Yet, pain in Parkinson’s disease often remains undiagnosed and untreated. Thus, it is important to understand that pain can be part of the Parkinson’s experience and to learn ways to manage it.

Neuropathies are complicated problems, with a variety of causes and treatments. In his presentation, Dr. Rodriguez recommended B-complex vitamins, including monthly Vitamin B12 injections for some PD patients whose oral medications might not be well absorbed.

Several promising developments are in the pipeline, according to Rodriguez:
  • “Race-PD,” a program of virtual care visits with specialists to take care of PWPs. Using software similar to Skype, Race-PD will provide specialty care to individuals with Parkinson disease in the comfort of their own homes.
  • A dopamine inhaler is on the horizon, as a rescue medication when regular dosages fall short.
  • A dopamine pump is also in development.
Relief for the Caregivers
Stacy Merritt, M.A., described the plight of the often-overlooked caregivers for PWPs. “Nearly two-thirds of caregivers — 62 percent– die before their patients do, because they don’t take care of themselves.”

Caregivers face a variety of issues of their own:
  • They are also aging, and struggle with physical issues they often ignore because they’re focused on the problem facing their PWPs.
  • They miss meals.
  • They’re overburdened by unending tasks.
  • They face tremendous tension and stress, a huge enemy of well-being.
  • They suffer silently from anxiety and depression.
  • They feel guilty for not being able to “do it all.”
Merritt listed a variety of resources:
  • Support groups
  • Adult day care
  • Family
  • Friends and neighbors
  • Clergy and church or temple members
She also offered a list of diversions that might help:
  • Get a manicure
  • Read a book
  • Go play BINGO
  • Get a massage
  • See a movie
  • Take a bubble bath
  • Meditate
  • Get help with cleaning, cooking, gardening, taxes
  • Take a day trip if possible
Caregivers as Advisors
Merritt suggested that caregivers are in an excellent position to help their charges prepare for the future, especially while their PD patients possess excellent cognitive function. She stressed the progressive nature of PD, and urged caregiviers to encourage their patients to make all legal arrangements – power of attorney, wills and trusts, funeral arrangements, etc.

PWPs should have everything in writing so that – when the time comes – there will be no questions about their wishes. These are difficult topics, Merritt said, and caregivers should use all the references at hand to help them successfully navigate these issues with their patients, in order to avoid bitterness and disagreement among family members when their loved one with PD dies.

Exercise is Key
Finally, UF Associate Biomechanics Professor Dr. Chris Hass talked about the importance of exercise for PWPs. He urged listeners to offset all their sedentary activities – working on the computer and watching television – with exercise, for both short- and long-term benefits. While much still remains unknown about the disease, Hass said, “One thing which we have reams of data to prove, is that exercise benefits Parkinsonism patients.”

The muscle weakness and balance issues that accompany the disease make PWPs susceptible to devastating falls. In addition, PD meds don’t help sensory orientation, motor coordination, or the biomechanics related to gait and walking. There are exercises that can mitigate the vulnerabilities of PWPs, especially modest strength training with weights, and treadmill exercises.

Exercise helps with other illnesses, too, like osteoporosis, pain, and cardiovascular disease. It also helps PWPs deal with issues that often accompany the disease, like psychological and sleep disorders.

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