Being diagnosed with Parkinson’s can be an unexpected and unwanted twist in your life journey. However, this unfortunate change can be an opportunity to negotiate how life will play out for you. Although you cannot completely control your future, making certain choices can set your path in the right direction. Smart planning, certain modifications, and keeping up the right attitude can make living comfortable and least challenging, even with Parkinson’s.
So, if you’ve just been diagnosed with Parkinson’s, here’s a list of things you should do to get through the first week after diagnosis.
1 . Talk to your loved ones
Don’t panic. Take a deep breath and break the news to your loved ones. Being fearful, you might like to withhold the news. But, being honest about your diagnosis is usually the best. The first conversation about Parkinson’s is often the hardest. Choose a time when you and your partner/parents/kid(s)/sibling(s) feel comfortable. All you need at this point is being honest and using simple language to explain Parkinson’s. They might feel sad or confused. Allow that to happen.
Hug each other and vow to do something good for the world. You can make a meaningful difference in life, even with Parkinson’s. This could be your answer to your diagnosis. World, look out, here I come!
2 . Discuss the diagnosis with your employer
Depending on the nature of your work and symptoms, your employment may get affected in the future. Talk to your human resources representative to find out what can be done so that you can work safely and productively. Ideally, your employer must take reasonable steps to:
- Change your work duties by removing tasks that require fine motor skills or heavy lifting.
- Move you to the ground floor.
- Change your workstation by providing a supported chair.
- Allow you some flexibility to work from home.
- Allow you to take time to attend medical appointments and sick leave.
- Schedule regular breaks.
- Make computer adaptations.
3 . Take your medication on time
Maximizing the benefits of your medication is important. Set up reminders on your cell phone to be certain that you are on time with every medicinal dose. Keep water, paper cups and straws available in your drawer so that you can prevent choking while taking medication.
4 . Exercise regularly
Exercising on a regular basis is a healthy habit to maintain balance, mobility, and daily activities in Parkinson’s. Working out not only looks after many Parkinson’s symptoms but also helps you sleep better and say goodbye to mild depression. Since everybody’s Parkinson’s is different, a standard plan cannot fit into your exercise regime. Sign up for an initialized Parkinson’s Therapy program. To make the most of your program:
- Always workout in a safe environment. Avoid slippery floor, poor lighting and loose objects around you.
- Understand that maintaining right posture while exercising is important.
- Keep a tab on your breathing pattern and heart rate. Breathing should never be labored and heart rate should never cross the max heart rate.
- Avoid using heavy weights during the workout as this may result in increased rigidity.
- Take adequate rest between exercises.
- If you are tired during the day, have trouble sleeping, and have low motivation, it could be a sign of overtraining. Talk to your physician to readjust the workout frequency or intensity.
5 . Consult an occupational therapist
Be willing to change the way you do things and live. Ask your doctor to suggest you an occupational therapist (OT). Modify your home in consultation with him/her. It can help you in determining where you require handrails, grab bars, non-slip mats, and night lamps. An OT will also help you discover new ways of doing simple, everyday tasks like dressing, eating, and cooking.
6 . Indulge in beneficial hobbies
Apart from improving motor skills and reducing the tremors and muscle stiffness, many hobby based activities seem to help Parkinson’s fighters by stimulating the imagination and promoting a sense of inner peace. And, the good news is hobby based activities are enjoyable, and there are no such rights and wrongs.
Approximately 70% of Parkinson’s fighters are affected by tremors that can be exacerbated by stress. So how do we manage them? By promoting relaxation. Art making can lower blood pressure, slow down breathing and calm the central nervous system. Pick an activity you like. It can be anything – painting, sketching, dancing, singing, listening to music, or playing a musical instrument.
7 . Combat fatigue smartly
At times, it would be hard to keep up with your exercise regimen due to physical and mental fatigue. Setting your priorities right and planning your day carefully can amp up your motivation. To maintain the right energy levels:
- Plan to take care of your daily activities around those times when your medication is most effective.
- Allow extra time to do everything, be it eating, drinking, dressing, talking, and writing. Tackle one job at a time and break down activities into a series of smaller steps.
- Try and test. Do not forget to try out any mobility equipment (canes, walkers, electric wheelchairs, or transport chairs) before you buy them.
- Set aside quiet time each day to grow spiritually. Listen to audiotapes that promote positive thinking and deliver a healing message.
8 . Maintain a healthy lifestyle
Take care of yourself to deal with the emotional side of the diagnosis. Grieving after diagnosis is taxing physically and emotionally. So, get enough sleep and eat healthy. This can improve your energy level. To ensure stress-free living:
- Get your living area arranged as per your needs. Build a clear and straight path, devoid of furniture in a home to prevent fall.
- Drink plenty of fluids to avoid constipation.
- Avoid slippery shoes/sandals or slippery tiles in your surroundings.
- Use adaptive cooking equipment.
- Educate your caregiver so that he/she can look after you in the case of emergency.
- If you are traveling, visit your doctor to figure out how you should handle medicine timing with time zones changes (in the case of international travel).
9 . Join a support group
Many people find support groups tremendously helpful right after the diagnosis. While they don’t exactly replace the standard medical care, they can make you feel less isolated. The groups come in a variety of formats. Introspect to know what exactly you want at the moment. Ideally, if you were recently diagnosed with Parkinson’s, you will benefit more from joining an educational group that offers helpful information and resources on Parkinson’s.
Attend a few support group meetings to make sure it meets your needs. Some fellow group members may be pessimistic about their future with Parkinson’s, while you could be looking for hope and optimism. Don’t feel obligated to keep attending if a group dynamic is upsetting. Not all support groups are a good match for you.