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Stephanie Soto

Having a Parent with Parkinson's

There is a lot to process when you find out your parent has been diagnosed with Parkinson's. From the looming thoughts of "will I get Parkinson's" to grieving, there are a lot of thoughts and emotions that can occur. Let's discuss common experiences and what to do to help your parent live well today.




"Will I get Parkinson's?"

With emerging evidence around genetics and PD, this is a common question that people will have. Genetics is thought to cause about 10% to 15% of all Parkinson's cases, suggesting that children may have a higher risk. However, this does not mean that it is an absolute risk. If your parent has a genetic variation linked to Parkinson's, this still does not guarantee that you will have Parkinson's. You can undergo genetic testing to determine if you carry the genetic link to help determine your risk, but this still will not tell you if you will develop PD. Speak with a genetic counselor to discuss the benefits and drawbacks of undergoing genetic testing.



Make choices that will improve your health

Genetics only play a small roll in Parkinson's. It is the combination of genetics, environment, and lifestyle factors that researches believe will lead to PD. If you prioritize your health, your risk may be lower and your parent may find it easier to prioritize their health too. Changing behaviors is hard, but it is easier when your support system are making those same changes. Try to emphasize exercising regularly, eating fresh whole foods, limiting processed foods and sugar, prioritizing your sleep, and staying active socially.


Find a support group

There are lots of local support groups for caregivers. Even if you are not your parent's caregiver, understanding how to support your parent does involve understanding how to support their caregiver.

It is hard to really understand what someone with PD is going through. Especially if you do not live with your parent where you are exposed to their experience constantly. Support groups are a great place to gain more knowledge and awareness around PD and their experience. It is also a great place to share your experience and connect with others that share similar experiences.



Stay positive

Positivity is so important for yourself and for your parent. I am sure that the possibility of developing PD can feel really overwhelming, or the fears around what quality of life your parent may have as the disease progresses can feel overpowering. Allowing these thoughts about the future to prevail can be detrimental to your life today. Practice gratitude and mindfulness, talk with friends, talk with a professional, and try to focus on how your life and your parents life looks today. The power of positivity should be be understated.



Grieve

You should allow yourself to grieve the life you thought you would have and you thought your parent would have. Giving yourself the time and space to let these feeling come to light is an important part of dealing with loss. Yes, staying positive is such a huge part of coping with PD, but so is addressing any feeling of grief and loss. Both are important, and both have a time and place. Don't ignore those emotions.



Live well today

Just because your parent has PD does not mean that either of you cannot live their life to the fullest. Living well with PD looks different for each person, but it all boils down pretty similarly. Find new hobbies, rediscover old interest, focus on what brings you joy, and keep yourself open to new opportunities. Life is short for everyone. Just because your parent has PD does not mean they can't enjoy it.



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