Surrounding yourself with people that know you and care about you are important.
My extended family is amazing. They are so helpful and always there for my family.
My Dad grew up in a large family. He had a close extended family with many cousins. They are all close and we still go to family gatherings with everyone!
One of his cousins, Sherrie, has grown up with him. I asked her to write her thoughts about my Dad becoming ill. Her family is important to my family. Her kids babysat me and my siblings when we were young.
Sherrie you are a wonderful person. I am so happy to call you family.
“I wish you lived closer so I could see you and your family more. Your Dad is one great person. I heard this illness is not getting him down, he is living his life the best he can to the end. I’m not sure I would be as strong as he is. I think of him and your family daily. Pray for you and am saddened by what life has done to the family. We had a lot of fun growing up together. Sometimes I felt we were one big family. We would exchange homes sometimes on weekends and during the summer. The boys would stay at one house and the girls would stay at another. Your dad has a heart of gold. He and your mom have been so good to my kids and me. I don’t want to lose him, it hurts to think someday he won’t be here to give a hug to or talk to. I wish I would be there to spend some time with him. I will cry a lot, but have my great memories. Love you Roger.”
It is Okay to be Mad
When receiving bad news you are not expected to instantly accept. Each person has to accept bad news on their own time and on their own conditions. It has been three years and I am now just starting to accept my Dad’s illness. I started out extremely angry and upset about the whole situation. Why would this happen to my family, why me?
Sound selfish? It does. I am not happy to say that I was angry that my Dad got sick. I was not mad at my Dad, I was mad that my life was going to change. My Dad was always there for me. He fixed all my problems and I never had to deal with any real serious issues. I lived in a perfect bubble and world. I am embarrassed admitting that I was not anywhere near a good person or good daughter at the time my Dad was diagnosed. I was so scared and overwhelmed by the news, I ran away from the problem. I busied myself in school, work and anything else that would make me too busy to think.
Amazing People in My Life
I eventually came around. I was lucky to have my Dad. He is an understanding person and cares about me. He pushed me to move out of my comfort zone which helped me grow as a person. When dealing with your ‘lemon’, find someone you can trust and someone that cares about you. Tell them everything about your concerns. They will make the situation easier. Throughout the past three years I have gained so many important people in my life that has helped me accept my lemon. My Dad is the number one but there are a few others that are mentionable.
- My little sister and I have become closer; we can connect on being in the same situation.
- My Aunt Kellie is a huge help. If I ever have a weak moment, she drops everything for me.
- My Mom is a wonderful lady. She has made sure our home life has not changed. For most of my life my Mom was a stay at home Mom since my Dad worked. She is the comforting figure in my life; she always made everything better. She has continued to care and be there for my family. The best is when you get random texts saying, “Hope you are having a good day! ” and when you come home you still have to ‘follow her rules, in her house’.
- My close friends have made a huge impact in my life. They make me remember that having fun and relaxing is important. I don’t want to mention names but they are aware of their amazing support.
I have recently added two new people to this list. Sonja and Karin from South Africa. We communicate via Facebook. They understand how hard this process is and have taken a weight off my shoulders by letting me know my Dad and I are not alone. They encouraged me to write a blog and tell people the journey I’ve gone through with MSA. I want my journey to show others that although it is hard, you can still be happy when a lemon happens. Don’t let it ruin your life. The positive outlook is the sugar that makes the lemonade sweet.
South African Inspiration
Sonja and Karin both have blogs. Check them out to hear about their journey with MSA and their positive outlook on life.
We have been through this process together from the beginning. Family is really important. They are there for you through the worst times and best times. In the end they still love you no matter what.
Hannah (Little Sister, 19)
Aaron (Big Brother, 25)
Parents (Laurie and Roger)
Everyone Has a Lemon
Everyone has a ‘lemon’ in their life. No one’s lemon is worse than another’s. Lemons are something that significantly effects someone’s life. It is a life-changing situation that no one else can understand. Being able to positively look at the situation and move forward is the only thing we can do.
I am Daddy’s little girl. This life-changing event of my Dad being diagnosed with Multiple System Atrophy (MSA) was very hard for me to take. I hate seeing him in pain and not being able to fully enjoy life. Accepting the diagnosis is hard and I am still trying to fully accept it today, three years later. When diagnosed with MSA, patients are given about a maximum of nine years to live. Not easy to digest but I am making the most of this situation.
My life has been positively impacted by my Dad’s illness. I am much closer to my family and appreciate them significantly more now than before. I listen and respect what my Dad has to say, not because he is my Dad but because he has so much life experience that I can learn from him.
Besides personal changes that happen when a parent is diagnosed with a serious illness, I have decided to make an impact on others. My moving forward in my situation is taking action. I have worked with my Dad to help create awareness. We have been in contact with multiple groups of people to help build a MSA awareness community. It is a rare diagnosis and there is not a department devoted to MSA. My Dad and I want to change that. Together, in March 2012, our efforts resulted in Governor Snyder of Michigan passing a proclamation declaring March MSA Awareness Month. We have met with many people and also have hit a lot of roadblocks. We are not letting any roadblocks stop us from successfully raising awareness for MSA.
I have contacted multiple people within the MSA community. I have been in contact with two women in South Africa who have a similar passion in creating MSA awareness. Sonja has MSA and shares her journey. Sonja’s best friend since childhood, Karin, has been helping with the efforts in increase awareness. They put on an event in South Africa Oct. 3, 2012 in honor of World MSA Day, which was successful. They had a small gathering of people compared to a Susan G. Komen breast cancer walk but it is a big step forward in the MSA community.
I was getting overwhelmed about how I could make a significant impact in creating MSA awareness. Connecting with others in similar situations has been helpful. A lemon situation is not easy and it is overwhelming.
I am still on this journey of ups and downs with my Dad but there is hope in a lemon situation for everyone. Keep moving forward and staying positive helps. Facing your lemon is hard but in the end it is rewarding.
I hope that readers can take away a piece of mind knowing that life isn’t always easy but we can still enjoy it. We can make lemonade with all the lemons we are given.
Multiple System Atrophy (MSA) is a extremely rare degenerative neurological disorder. There is no cure and no specific research dedicated to just MSA. The symptoms are a wide range of neurological failures. Each case is different and each patient has to be treated differently. There is a fine line between exercising enough and exercising too much or too little. Not moving enough can cause the disorder to freeze up the body of the patient and exercising too much can cause the patient to become exhausted for days. Both ends of the spectrum cause the disorder to progress faster. Once someone is diagnosed with MSA after years of medical tests and not knowing, they are given a maximum of nine years to live. Then for the rest of their lives they are faced with pain, sadness and being scared of the unknown.
My Dad was diagnosed with MSA December of 2009. He went through years of medical tests and many misdiagnosis. It was hard going through the years leading up to 2009 but not as tough as it was after finding out. Within two years of finding out, my Dad had to quit driving and quit his job. He was a successful portfolio manager in the investment business. He won awards consecutive years in a row, he traveled to deliver speeches on his success and most importantly he enjoyed what he did. The hard part has not been the changing of family dynamics. The hardest part of this process and my lemon is to see my Dad loose his life. He loved going to work, loved to drive his car (95 Aero Saab: his baby), loved to run and loved to be there for whatever his family needed. Now he relies on others and it kills him. In his words about not being able to drive, “it’s a pain in the ass”. He was somewhat of a workaholic and now he is reliant on others if he is going to get out of the house and get things done. My Lemon is not that I will at some point loose my superhero Dad but that he can’t enjoy the happiness he created.