As parents we all deal with a lot of challenges. We have so many choices as parents – what can I do to keep my child healthy, how do I share with my child family values, what is best for their cognitive development, what about their social development? And the list goes on…. Imagine for a moment all your parenting responsibilities and then thrown on top of it dealing with an incurable disease. We met such a mom on Twitter. ShakyMommy is dealing with Parkinsons – a non-curable disease that attacks the neurological system. There are no cures for it; only medications with terrible side effects to control it. That doesn’t deter Brandi who is a loving mom to 3 beautiful children and a baby boy on the way.
You were diagnosed back in 2009. Were you feeling ill? What brought you to get tested for Parkinson’s disease?
I have had a tremor in my right hand for years. It had progressively become worse and more noticeable to those around me. I was chronically exhausted and had muscle aches that seemed to be unrelated to my daily activities. When I started falling down stairs, and even just falling down while walking, we realized there was something wrong with my balance. My husband began to think that my symptoms might be related and encouraged me to see a neurologist.
What was your first reaction when you heard the news? How did you tell your children?
I was just relieved to have an answer. Parkinson’s is rare in people my age so I had to see several doctors before getting a diagnosis. After searching for a cause, it was nice to have a doctor recognize that the symptoms were connected and give me a name for it. To officially diagnose the Parkinson’s, I was placed on the medication that treats it. So for the first time in years, my symptoms had gone away and I actually was starting to feel somewhat “normal.”
My kids are still young, so I have not had to tell them very much. My oldest, who just turned 8 and is by nature a very curious child, has had the most questions. She had noticed my tremor and picked up on the fact that I was going to the doctor a lot. When she asked, we told her that I have a disease inside my brain that makes me shake and that it sometimes makes me very tired and sore. We reassured her that I am not going to die and that I will be around for a long time to take care of her. I feel like the most important thing I can do for my kids, especially at this stage of their life, is make sure they know that I’m going to be here for them for a long time.
Would you say Parkinson’s has impacted your parenting? What have been the challenges? Have you experienced any hidden blessings?
Parkinson’s has definitely impacted my parenting. The biggest challenge I have faced is in not being able to do everything I want to do. For example, we took the kids to an amusement park this past summer. We had only been there a couple of hours but it was a hot day and became too much for me and we had to leave. I felt like I had ruined the day! We have since learned to plan our outings in smaller increments and to be realistic about what we can accomplish. We also have learned that PD is unpredictable. I might have a really great day and be able to handle hours of activity or I might wake up that morning and be so sore I can’t leave the house. My kids are great – they have been very flexible and understanding when we have to cancel or shorten outings.
As for hidden blessings, I’m definitely more grateful for the good days when I’m feeling good and make a point of doing fun things with my family on those days. If it weren’t for the bad days, I might not appreciate the good days as much as I do.
You are pregnant now with a baby boy due in February. Pregnancy has so many ups and downs. How have you be able to cope with pregnancy and Parkinson’s challenges?
I don’t really look at it as coping. This is my life and I try to live it the best I can. I went through a time when I was first diagnosed with Parkinson’s when I was constantly thinking “This isn’t fair!” as I would encounter situations or tasks that were becoming challenging for me. When I thought I might not be able to get pregnant because of Parkinson’s, I was disappointed and angry. I really wanted a baby. So once the doctors told me that Parkinson’s would not affect a baby’s development, I wanted to go ahead and get pregnant. I was determined not to let Parkinson’s dictate every step of the rest of my life. We have had to make some accommodations for this disease and will likely continue to have to do that in the future, but I didn’t want it to steal away my dreams.
Knowing this is my last pregnancy, I’ve tried to just enjoy being pregnant, even when that means being uncomfortable or sick. I have learned to focus on the things that really matter each day, like taking care of the kids and myself. I have learned to let my husband do more for me and I have learned to change my expectations of myself. When I first got pregnant with this baby, my husband would caution me to take it easy and I would start to remind him how much I did during prior pregnancies. I was trying to go through this pregnancy with the same expectations of myself and quickly learned that I can’t do things that way. With my other pregnancies, I didn’t cut back on any social activities; I didn’t take naps or do anything differently. I had the nursery decorated and set up by the time I was 7 months pregnant. I haven’t been able to do things that way this time. I’ve learned to pass on extra activities. I lay down as soon as I start to feel tired. In general, I just focus on growing a healthy baby and letting my body get the extra rest it needs right now.
Any advice for parents who are struggling with sickness while they parent?
Don’t let your illness define you. Enjoy the good days with your kids and take advantage of opportunities to teach them that while your illness may be an obstacle to be overcome, it’s not the end of life as you know it.
Brandi at a glance:
What is something that is always in your fridge? Lemon juice- I use it to flavor my water and my green tea.
What is your must have product during pregnancy? I have a few: crackers and almonds for nausea, a doctor who trusts my instincts, and a very helpful husband
What is your best “sanity” break to recharge your parenting battery? My favorite way to recharge is with a trip to the beach. Even when we take the kids with us, the beach is just so relaxing for me! We aren’t able to get away often, so when at home, I recharge by getting lost in a good book.
If someone was going to write a book of your life, what would the title be? Shaky Mommy Surprises Herself