A Caregiver’s Guide to Parkinson’s

Caring for someone with Parkinson’s disease requires a special type of caregiver. In order to provide effective home care for someone with Parkinson’s, their caregiver will need to be aware of the various aspects to the disease and how it affects each person. Due to treatment of Parkinson’s being highly specific to each person, a dedicated caregiver is required to be fully aware of what to watch out for with Parkinson’s, as well as the overall role they will play in improving the quality of life for someone with the devastating disease.

What is Parkinson’s?

Parkinson’s disease is chronic and progressive disorder that affects the cells in the brain that are charge of movement. According to the National Parkinson's Foundation, the disease affects an estimated 1 million people in the U.S. The disease specifically targets the central nervous system and affects the nerve cells in the brain. The cells it affects are in charge of producing dopamine, and when those cells die it causes nerve misfirings and are the reason those with Parkinson’s experience impaired movements, tremors and loss of balance.

There are a variety of factors of Parkinson’s disease that make it difficult to deal with. First, there is no known cure for Parkinson’s and currently the only way to help alleviate symptoms is through various lifestyle changes. In addition to this, the cause of Parkinson’s is still unknown and doctors often have a difficult time diagnosing the disease, as there are no specific tests physicians can use to determine has the disease. Instead, many physicians rely on a system of studying four features of the movement disorder, called T.R.A.P.

This method includes checking for:

  • Tremor or shaking at rest
  • Rigidity felt by doctor when holding the wrist
  • Akinesia, which is a lack of or slowness of movement when swinging your arm
  • Postural instability, meaning you need to hold on to something to balance when standing or getting up

While this system is reliable, it also requires the doctor to be aware of various factors that could sway the results, such as certain medications and existing conditions. 

How Can Caregivers Help?

Often times the most frustrating part of Parkinson’s is there is no universal method to alleviate symptoms, as each person will experience the disease differently and require a different change in lifestyle. As a caregiver, you have the advantage of being in regular contact with your Parkinson’s patient and you can use this relationship to better understand their specific needs and help them with working towards improving their quality of life. There are a couple of specific areas that you can focus on to help someone with Parkinson’s.

Medication Assistance

Parkinson’s medication is designed to work on the biochemistry of the brain to help alleviate symptoms, but these types of medication require adhering to a strict schedule to make them work effectively. Even a few minutes too early or late can result in increased rigidity or tremors. As the caregiver, you are able to help them stay on track with these medications and give them one less thing to worry about. 

You should also be aware of medication your client is taking to alleviate other issues such as depression or insomnia, as you will need to be aware of everything they are taking in order to make a reliable and effective medication schedule.

Exercise and Physical Therapy

There has been growing evidence and recent studies that have found that a regular exercise routine can almost be as effective for alleviating Parkinson’s symptoms as medication. Helping your client get their daily dose of exercise can help keep their bones and joints limber and more active, which helps their neurological health.

As a caregiver, you can also assist or suggest that your client seek professional physical therapy in order to help reduce Parkinson’s symptoms. While most people consider physical therapy following an accident, it can be a part of a regular exercise routine for those with Parkinson’s in order to keep them moving comfortably as they age.

Observation

The third and final area that caregivers can assist is arguably the most important to someone with Parkinson’s. Because this disease is so individualized, and your treatment options are dictated by how your body is being affected by the disease, having a constant outside observer becomes highly valuable. 

As a caregiver you can be an extra set of eyes for the physician to watch out for changes in:

  • Symptoms: Due to the fact that Parkinson’s treatments are catered specifically to each persons symptoms, one major change you will be monitoring is any progression of existing symptoms. If you are adhering to the medication schedule properly and you notice their symptoms are getting more severe, you need to report that change to their primary physician so they are able to adjust the medication accordingly.  
  • Mood: Depression is present in over half of those who have Parkinson’s, and is has many physicians wondering if depression should be considered a major symptom of Parkinson’s. In addition to depression, be on the lookout for an increase in stress or anxiety and report any changes to their primary physician. Your client could potentially benefit from being prescribed anti-depressants if their doctor is aware of these changes.
  • Sleep: Those who are diagnosed with Parkinson’s typically have a difficult time maintaining a proper sleep schedule. With disruptive symptoms and strict medication regime, they are often left feeling tired and slow during the day, but still unable to stay asleep during the night. A lack of energy makes it hard for those with Parkinson’s to keep up with exercise or physical therapy, which results in a decline in overall health. Report any sleeping problems to the physician so they can adjust medication accordingly.

Companionship

As mentioned in the previous section, those with Parkinson’s have also been found to experience depression, anxiety and other difficult mental conditions that add to the stress of the disease. It's also been found that this added  stress can cause an increase in symptoms. Many of those diagnosed with Parkinson’s have found that sharing their diagnosis, as well as the aspects of the disease they struggle with, can help take a portion of  the emotional burden off the person with Parkinson’s.

As their primary caregiver, you can provide invaluable companionship to someone diagnosed with Parkinson’s. Being able to be someone they can talk to throughout the day, and help the person fight for a higher quality of life, puts you as the caregiver in a position to have an immense effect on the life of the person you care for. 

Your Role is Vital

As the primary caregiver of someone with Parkinson’s, you are going to be able to help improve their quality of life in a more meaningful way then their primary physician. While the doctor is responsible for diagnosing, prescribing and overall dealing with treatment options for the patient, as the caregiver you are able to provide more information to the physician which can help them treat your loved one more effectively.

Due to the high personalized nature of the Parkinson’s disease, your loved one’s primary physician is going to rely on your insight and observations. Now that you are aware of what to watch out for, and how you can play an active role in improving the life of your loved one with Parkinson’s, you can feel confident that they are able to make the most of life.


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