Living with Parkinson’s disease

Progression of the disease is not sudden, and gradually begins to impact just about every aspect of a person’s life. From basic day-to-day routines to working ability, relationships and social engagements. The gradual loss of independence can be increasingly difficult and frustrating.

There is, however, plenty that can be pre-planned for when it comes to ‘what lies ahead’ following a diagnosis. Sure, critical aspects of the disease are not yet known, but there is plenty to work with in terms of preserving the best possible quality of life with a variety of different experts on hand to assist with making the adjustments that enable a person to achieve this in the best way possible. 

It is very important for a newly diagnosed Parkinson’s sufferer to make an effort to develop strong relationships with his or her medical care team and seek consistent support from counselling groups, and loved ones.

As the disease progresses, treatment across all areas of expertise will need to be adjusted in order to maintain the best quality of life possible. Preparing for this mentally may make for smoother transitions when the time comes.

By taking an active role in managing Parkinson’s disease, a sufferer can ensure that treatment is successful in targeting degenerative symptoms. As there are multiple disciplines involved, it is wise to ensure that each of the various areas of expertise are well aware of one another, so that treatment can be effectively coordinated.

What can a Parkinson’s disease sufferer do for themselves?

Once a healthcare team has been established and a level of comfort is achieved taking medications, and managing symptoms and side-effects, an individual can begin implementing a variety of other coping mechanisms into daily life.

Lifestyle considerations and coping mechanism tips include:

1. Making efforts to improve walking ability: Develop habits of walking at a controlled pace (not too quickly) and carefully, placing the heel on the ground first and adjusting posture as best possible. Standing up as straight as possible will help to reduce foot shuffling when walking.

2. Making efforts to reduce the risk of falling: Never backtrack or walk backwards, avoid carrying objects that can influence balance while walking, refrain from leaning or reaching when moving around and avoid sharp movements or pivoting on the feet in order to turn (rather make a U-turn).

3. Dressing adjustments: Clothing choices may need to be changed so as to avoid finicky things such as buttons and zips which can become difficult to use when dressing and undressing. Clothing that is easy to put on and take off is best – Velcro and elasticated waist bands will make for easier dressing. It may take a little longer to dress and undress, requiring a little more patience than was once necessary.

4. Diet and nutrition adjustments: There is no set diet plan for Parkinson’s disease, but healthier ways of eating can certainly work in a person’s favour for optimum all-round health. A balanced diet can help to reduce the amount associated complications such as constipation. Omega-3 fatty acids, whole grains, fruits and vegetables, dairy products, protein-rich foods such as beans and meat, as well as healthy fats found in olive oil, nuts, fish and eggs are all good options to include in a daily diet. Adapting one’s diet may be a little challenging, but working with a registered dietician may help to make smoother changes, especially when made one at a time. An occupational therapist can also introduce helpful devices which aid in making swallowing difficulties easier. What a person is able to eat in terms of textures (those which are easier to swallow) may need to be adapted as the disease progresses, but for the most part, an individual will need to develop the habit of being in tune with their bodies and how symptoms affect certain areas:

• Digestive difficulties and urinary issues can be alleviated with enough water intake (or consuming foods with high water content such as watermelon, grapefruit, strawberries, butternut squash and celery) and fibre-rich foods such as wholegrains, brown rice, beans and fruit.
• Medications can be taken with a full glass of water so as to assist in easier drug breakdown and absorption in the body. Most medications are best taken on an empty stomach (or sometimes with a small snack) and certainly not before consuming a protein-rich meal (which can slow down absorption and make the drug less effective).
• Reducing intake of sugar, caffeine and alcohol can help to alleviated trouble with sleep.
• Vitamin D intake in either supplement form or via milk products can help to promote better bone health.
• Improved brain function can be achieved with regular consumption of nuts (in small quantities) such as walnuts and cashews, as well anti-inflammatory foods such as salmon, dark leafy green vegetables and tuna, as well as berries which contain high concentrations of antioxidants.

5. Developing an exercise routine: It’s all too easy to want to give in to mobility problems and hide away, but regular exercise (long-term) is the best way to achieve muscle strength, balance and flexibility, which in turn can help to improve many physical Parkinson’s disease symptoms. Developing a personalised exercise programme can be hugely satisfying and help to counteract symptoms, by working against degeneration of walking, balance and general mobility. A physical therapist can assist with developing a programme of activity that best suits a person’s interests and physical capabilities.

A programme that includes areas of aerobic exercise and resistance training, can include activities such as swimming, water aerobics, rowing, walking, dancing, barre work, golf, gardening, boxing (non-contact), weight lifting, resistance bands, yoga, tai chi, Pilates and stretching. Benefits of exercise can extend to managing non-motor symptoms such as emotional distress, anxiety and depression, as well as improving overall cognition.

Caring for a loved one with Parkinson’s disease

As much as treatment focuses on enabling a Parkinson’s disease sufferer to develop newly adjusted ways to maintain an independent lifestyle, disease progression cannot be curbed. This means that many will reach an advanced stage of the disease and become almost completely dependent on a caregiver.

Basic functions such as help with dressing, eating, bathing or getting to an appointment with a doctor or therapist can reach a point of total dependency. A caregiver can be known to a person with Parkinson's disease (a loved one – family member or friend) or an individual involved in caregiving professionally.

The impact of care not only affects the life of a Parkinson’s sufferer, but also the caregiver too. Caregiving is taxing physically, mentally and emotionally too and best serves an individual with Parkinson’s disease when the caregiver ensures to take care of him or herself too. Caregiving requires patience from both sides – the caregiver, as well as the individual with Parkinson’s disease.

A caregiver can ensure that caring for an individual with Parkinson’s disease is a lot less complicated by:

• Attending all medically related appointments and assisting with explaining to relevant medical professionals how the person is faring with treatment, day-to-day function, possible side-effects and the overall progressive nature of the disease. A Parkinson’s sufferer may lack in being able to communicate important information, especially if memory has become problematic. A caregiver who takes an active role in a person’s Parkinson’s disease treatment can be of great help to them.
• Ensuring the best quality healthcare is available for an individual with Parkinson’s disease. This may also involve ensuring that a sufferer receives appropriate vaccinations, especially when it comes to annual flu shots or the pneumococcal vaccine to keep infections at bay.
• Involving friends and family in a Parkinson’s disease sufferer’s day-to-day life. This will not only do them good by having frequent company, but also allow for easier management of other errands, such as grocery shopping or picking up children from school (if early onset Parkinson’s occurs).
• Finding support where it is needed, including groups which assist those with a debilitating illness, as well as their close family members and caregivers in coping with the emotionally straining effects of it all.
• Caregiving during the latter stages of Parkinson’s disease can become more difficult and demanding. It is best to enlist the help of professionals (palliative care) to help best manage symptoms and side-effects, especially if a person with Parkinson’s disease has severe depression or dementia. Options include home health nurses or a nursing home environment.