A Delicate Balance

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A Caregiver’s Life:  A Delicate Balance

By Beverly Evans

           

When my husband was diagnosed with Parkinson’s Disease eleven years ago, we were both still working, socializing, finding the joys in life with travel, hiking, and a newborn grandson.  As the early years with the disease went by, I remember thinking, “Well, if it doesn’t get any worse than this, we’ll be fine.”

Of course, that was not meant to be.  As the years went on, more changes occurred, more challenges arose, working ceased, large social settings became more stressful, travel became more challenging, and everyday activities became more frustrating.

I now find that being the caregiver is like walking a tightrope—a very delicate balancing act.  When I try to help with the little things, have I gone too far and encroached on his independence?  When I insist on driving, have I belittled his manhood?  When I ask him to repeat what he has said because his voice is soft, have I reminded him of only one more frustration this nasty disease presents?  When I check on his pill schedule for the day, have I caused more aggravation than helpful support?  When his patience waxes and wanes, have I remained tolerant enough, understanding enough?  When he senses a loss of control over the things that once were so easy to accomplish, will I know when to step in and when to back away?  Such is the balancing act of the caregiver.

But through it all, we have become more understanding of each other, more loving, more tolerant, more thankful that we have each other to depend on.  So we do our best to find that that balance as we walk the PD tightrope together—not looking down, but trying to look up, holding hands to steady each other, and doing our best not to fall.  Somehow we’ll make it to the end of that rope—together.

The Long Battle

IMG 7074The Long Battle With Parkinson’s Disease

-From a personal perspective, by John Evans

For the past 11 years I have been trying to stay ahead of the inevitable physical and mental decline associated with Parkinson’s Disease. Family and friends have voiced how well I manage this disease and their wonderful support is greatly appreciated and much needed as I move deeper into life with Parkinson’s. 

Movement problems have increased this year including dystonia issues for the first time. Medication is unable to control the increasing periods of slow movement and dyskinesia has significantly increased. Despite trying different drug intervals and Rytari the off times continue to increase. So the time has arrived to seriously consider Deep Brain Stimulation Surgery (DBS). For myself, this a rather frightening procedure, but there do not appear to be any other options, as I have no interest in the Dupo stomach pump. My goal is to reduce the drug intake following the surgery and gain significant medication on time. If this procedure will provide improved daily life even for five to ten years it will be well worth any risks associated with surgery.

I know all Parkinson’s patients experience different issues at different stages of the disease. No two patients are the same, but progression will occur at various levels. Be prepared for the day you realize you cannot continue on without medical help as drugs do become less effective over time. We all continue to hope for a miracle drug to eradicate this terrible disease. I believe that day will arrive but not in the near future. So we only have current treatment methods to help us live close to a “normal life”. Please continue to donate to Parkinson’s research to hopefully reduce the time for finding a cure or at least better treatment.

Being Active and Staying Active

Dr ShulmanBy Lisa M. Shulman M.D. 

Those days are over… when daily activity and exercise were considered admirable but not in the same class as say, recommendations for starting medication for Parkinson disease.  Over the last 20 years, we’ve moved into a new stage, indeed, a new understanding of PD and its management.  Today most clinicians caring for people with PD, actively recommend regular exercise.  And the importance of both the motor and non-motor symptoms of PD is virtually conventional wisdom.  There is ample evidence that problems walking and poor endurance are improved or delayed with regular physical exercise.  And many believe that it’s just a matter of time before we have evidence to support the benefits of exercise for non-motor symptoms, especially cognitive problems.

Today, the goal line has moved from establishing the benefits of exercise to finding strategies to keep people active.  Research shows that exercise promotes neuroplasticity- the remodeling and rewiring of nerve pathways in the brain.  But these benefits are not stable and enduring.  They begin quite soon after physical activity commences and the reverse is true- these changes regress when activity halts.  We need to continue to exercise about three times a week for 30 to 60 minutes a session to achieve the benefits shown in study after study.  Exercise need not be very high intensity, but it does need to “stretch your envelope”, in other words it should be challenging for you based on your baseline activity and level of fitness.  Our studies show that most people with PD are so sedentary, that simply walking at their normal pace for a half-hour is aerobically challenging.  We now also recognize that an exercise regimen needs to have several components- 1) aerobic (cardiovascular), 2) gait repetition (e.g. walking or cycling) and 3) progressive resistance (muscle strengthening).

But here’s the discouraging news- we’ve known for many, many years that exercise is highly effective for heart disease, for diabetes, for high blood pressure… but relatively few people take this to heart (pardon the pun).  And now we’re in the same boat in PD.  Yes, more people are exercising, but many don’t exercise at all, and many exercisers don’t sustain their activity.  So, at the University of Maryland, we’re now focusing our attention on the activity of our patients between office visits.  We want to understand the relationships between activity and disease stage, activity and age, activity and gender, activity and education.  We want to know how to set reasonable exercise goals for our patients.  And we’re studying what motivates people to sustain daily activity and routine exercise.  Because we want everyone to reap the health-promoting benefits of exercise- not just for PD, but for an increasing number of medical conditions. Try it today – take a 10 minute walk around the block and increase your time each day. Take the first step to a healthier you!