Parkinson's Disease: Tips for Caregivers

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Sandra Ray

Caregiver.com - With more than one million people affected with Parkinson’s disease in the United States today, there are many issues that caregivers are either facing now or will face in the future. Parkinson’s disease is a slow, degenerative disease manifesting itself in stiff muscles, difficulty walking, and other movement-related issues over time.

With the majority of those who are diagnosed over the age of 60, there are still many people who are diagnosed as young as age 30. Caregivers need to be aware of not only the issues that Parkinson’s poses for their loved ones, but ways that they can help mitigate the damage and help in quality of life decisions. Some of the areas where caregivers can assist include: medication management, exercise and diet, and reducing stress, and even issues related to travelling.

Parkinson’s Disease – What Caregivers can Expect:

In Parkinson’s disease, the body’s ability to produce and utilize a neurotransmitter named dopamine is affected. This particular neurotransmitter affects the body’s ability to control movement and coordination, as well as regulating mood. The result is that body movements become more stiff and regimented over time, responding less to the move “fluid nuances” of everyday movement that the body was once accustomed to. Many people with Parkinson’s also face issues related to depression when the amount of dopamine in the brain decreases. Finally, dementia and hallucinations are also a possibility, although only about 20 percent of people with Parkinson’s will also experience problems related to dementia. The onset for dementia symptoms and other cognitive or memory issues generally are noticed about 10 to 15 years after the first onset of Parkinson’s.

The first noticeable symptom of Parkinson’s is usually a slight tremor in the limbs. Over time, the patient will experience difficulty walking and may progress into a typical “Parkinson’s Gait” – shuffling, head facing downward, and little or no swinging of the arms. Freezing in mid-stride is also a common feature. Other secondary symptoms related to Parkinson’s include difficulty swallowing, small or cramped writing, loss of bowel control or constipation, dry skin and scalp, and even excess salivation.

Medication Management:

One of the issues that caregivers can face is learning how to cope with the myriad of medications that their loved ones may need to take to help manage the disease. Some of these medications may help manage symptoms related to movement, while there are also medications needed to help offset depression and mood issues. If your loved one is experiencing difficulties related to dementia, there could be other medications for that portion of the disease as well.

Depending on the situation, your loved one may be able to manage taking medication with little help from you. Dementia, of course, will require extra vigilance. Some of these ideas may help ease the medication worries:

Keep medications in their original containers.
Keep handy a list of medications that your loved one takes in case someone else needs to dispense medications for you.
Take the list to each doctor appointment, especially if you are seeing a physician who isn’t familiar with your situation.
Consider using medication “minders” for time of day or days of the week to keep a good system in place.
Keep other family members and friends informed about the medication schedule, especially if you are the sole caregiver.
Medications can be expensive, and if prescription insurance is an issue, consider applying to the patient assistance programs available through most of the pharmaceutical companies. Pharmaceutical companies are required to have patient assistance programs to help those who may not be able to afford chronic medications. These programs are often guided by income and whether or not you have access to prescription insurance. The physician will often have to sign paperwork and provide a valid prescription for the medication that is needed. To find out if your medications are covered by these programs, visit www.rxassist.org or www.needymeds.com. Both of these sites list medications by generic and brand name and provide links to forms that you’ll need to fill out in order to qualify. Eligibility requirements vary according to the company, so read each one before you apply.

Lifestyle Changes:

Parkinson’s disease may not require a dramatic change in your lifestyle overnight, but there will need to be some adjustments made, especially as the disease progresses. For example, physical therapy may be needed in order to adjust to some of the debilitating effects of the movement difficulties that will become more apparent over time. Medication can manage some of these effects, but eventually the medications will lose their effectiveness and physical adjustments will need to be made. Physical therapy can help provide coping mechanisms for the days when your body simply will not move as you want it to.

Finding the right exercise program is important. Many people find that they are able to maintain a fairly active lifestyle, making minor accommodations in the beginning for Parkinson’s. It is important, however, to consider slowing down or limiting certain types of activities due to the disease and its progression. For example, if you and your loved one enjoy swimming, make sure you both go together. If an episode of freezing occurs in the pool, it could be dangerous. Instead of running on a regular basis, walking may become a more pleasurable alternative. There are many activities which require only minor adjustments in timing or scheduling that can keep your lifestyle active without feeling that you are missing too much of your previous activities. It is important to discuss exercise programs with your physician, and he or she may be able to suggest other activities that will keep the body active and healthy at the same time.

Diet is especially important. If your loved one is overweight, now is an excellent time to begin managing weight loss. Even though obesity itself is not a cause of Parkinson’s disease, it can be a limiting factor in how much movement is possible as the disease progresses. Losing weight can help your body adjust quicker to movement-related issues and can help muscles adjust to the extra demands of the disease. Your physician can suggest dietary changes that will provide the maximum health benefit and one that can be easily adopted by others in the household if this is a requirement.

While dietary supplements like Vitamin E do virtually nothing to help with the disease management, changes in diet may be needed over time. If problems like swallowing do occur, changing the types of food in the diet may become critical. In addition, too much saliva can hinder swallowing, so limiting the foods that aggravate salivation may be helpful as well.

Travelling with Parkinson’s:

Many people feel that Parkinson’s disease limits their ability to travel and enjoy the retirement or later years. Instead, people with Parkinson’s can still travel – they just need to make a few extra planning steps in order to make their trip enjoyable. Here are a few tips to consider:

If you’re flying, arrive at the airport earlier than usual to compensate for movement difficulties that may arise as you navigate the security checkpoints and allow for last-minute gate changes by the airlines.
Double-check your medication to make sure that you have more than you’ll need for the trip. If you’re stranded a few days at your destination before you can return home, having extra medication is not only handy – it’s a necessity.
If you can’t bring extra medication, check to see if your pharmacy is available in the town where you’ll be travelling. Make sure that you have enough refills in case you need to pick one up while you’re away.
Keep emergency numbers stored in more than one place – having them in the suitcase only, for example, can be a problem if your luggage takes a sudden detour while en route to your destination. If possible, carry a small bag with extra medication and emergency phone numbers, including your physician’s.
Plan extra time on you vacation for rest. In the excitement of the trip, it’s easy to overdo the amount of activity that is packed into one day. Schedule rest time to make sure that your body isn’t overtaxed. If you need to add more days to the trip or plan less, it will be worth it if you don’t have the stress of feeling as if you were too limited by Parkinson’s.
Caregivers can do much to help their loved ones keep the disease as manageable as possible. By helping with medication management, doctor’s appointments, keeping a consistent diet and exercise plan, and even managing those fun vacation getaways, caregivers can inject a feeling of hopefulness into an area of life that could quickly become too stressful. Reducing stress is also a key area to consider with Parkinson’s, since stress has been known to aggravate Parkinson’s symptoms.

There is no known cure for Parkinson’s, although researchers are working on one every day. Until a cure is found, the disease can be managed. The effectiveness of the treatment relies a great deal on the amount of planning and communication that takes place at home, as well as that done in the doctor’s office.

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