Young Onset Parkinson's Disease (YOPD)
There is often a misconception that Parkinson's only affects older populations. Many of you here in the community know that this is not necessarily the case.
For those who were diagnosed with YOPD, what was your diagnosis journey like? How have your symptoms changed since you were diagnosed? This forum post is an open place to share about your experience.
Hi there, no too sure what to write here, so here goes……
I was diagnosed at the end of May with YOPD, I’m 42. After experiencing a number of changes with my body, and how it was functioning incorrectly, I finally got referred to a neurologist. An 8 month wait then gave me answers, answers that I am still struggling to get my head around. There are so many things that now kind of fit into place. For the past 10 years, I have suffered with night terrors, anxiety that has worsened, loss of function down the right hand side of my body, although that has only been the past three years really.
I have a great neurologist, and I am medicated, which is taking time getting used to, but I guess that this is a journey that is going to challenge me at times. I take this day by day, that’s all I feel I can do right now.- Thanks so much for sharing about yourself. Despite the challenges you're facing, I'm so glad to hear that you have a great neurologist working with you. This community is here for you as you navigate the new normal. Hope you have a great day. - Chris, ParkinsonsDisease.net Team
Hi Jules79, I hope you are enjoying our website. Here is an article that might give you more information on YOPD. https://parkinsonsdisease.net/video/yopd-journey. Let us know how you are doing. Best regards, Suzanne Troy, Advocate, ParkinsonsDisease.net
Hi Jules, I am glad that you are taking each day as it comes. Thinking about your past makes many PwP sad and afraid of the unknown. If you feel depressed or anxious, you may have done so already, but contacting a psychiatrist or counselor may be beneficial. Please let me know how you are doing these days. I care. Marc M., Moderator, parkinsonsdisease. net
Hello, I'm back from vacation. I'm so glad that Marc gave some great words of encouragement! It really does help to have a team of professionals to help you manage your care. Seeing a counselor can be a super help! A social worker on staff with my father's neurologist has helped my parents and I map out the journey of having a chronic disease like PD. It helps to see what you can do and what resources are available to you! Does your doctor's office have a social worker on staff? We care about you here at ParkinsonsDisease.net! Please let us know how you are doing! All the best, Suzanne Troy, team member
Thanks for sharing your thoughts, Jules79. It is a lot of information to digest getting a YOPD confirmed diagnosis. We are here to help you if you need to speak to us, need an answer to your questions, or just want to chat. Regards, Marc M., Moderator, ParkinsonsDisease.Net
thank you, I sure do have many questions, but the biggest one I still can’t understand is, why me, maybe a selfish question, but I am yet to come to terms with my diagnosis I think. I wish I could honestly answer your question of Why Me. If you haven't done so already, this is a good question to ask your doctor, psychologist or clergyman. Best, Marc M., Moderator, ParkinsonsDisease.Net
Hi, I was 35 when my symptoms began, it took 3 years (2006) before I actually received my PD diagnosis. It was a whirlwind of news and the timing was so wrong! I had just lost my best friend and baby sister to stomach cancer(2007); so needless to say, it sent my world into a whirlspin. Only to find out that my husband of 21 yrs. could not deal with my illness and decided to abandon our marriage(200😎 we divorced in (2009). My four children and I were a train wreck for the first couple of years. I think that partially my fault as I slipped into a deep depression and was even thinking about ending it all? I would later find out it was partially the fault of being on the wrong meds. 2010 started off with my father passing on New Years day. And thanks to getting no financial support from my X, we lost our home in 2010.
I went on for the next two years in a dark place, a path of self destruction. Luckily for me God was carrrying me the whole time, or I would not be here today. I befriended a gentlemen who didnt care about my PD but just wanted to be with me. We've been friends for almost 13 years now and would have married but our church won't allow us to, and its not beneficial for us to just get married civily. So we live as brother and sister in our own home and he has been my care giver for the past 3 years. Im really struggling with walking even though i have a great walker. He is 15 years my senior and still working sol its hard for him to see me so idol and without the energy or motivation to do anything, so we struggle. But we're taking it one day at a time, or at least I am! There is so much more but i'll stop here for now. Thanks for letting me vent.Thank you Anita for sharing your accounting of living with PD and having to deal with life's twists and turns regarding your family's survival as a cohesive unit. I am so sorry to hear all that you went through. You are a strong woman, being able to fight back whatever is thrown your way in life. Kudos! Wishing you all the best, Marc M., Moderator, ParkinsonsDisease.Net
