Hi,

I'm new to the forum. Last year, I was diagnosed around the same time I discovered that I was pregnant! I most likely had PD for at least 7 years, but I didn't start meds until last year (agonist and dopa) only to interrupt all that for the health of my son. Interestingly, it's nine weeks post delivery, and I find that Mirapex seems to be doing a whole lot of nothing for me anymore. I did read the scant literature that exists on women who have PD and carried full-term: of the 20 or so scattered published cases, many women, not all, experienced a permanent increase in PD symptoms or slight advancement of disease. Though I wonder whether it's actually advancement or something to do with pregnancy that impacts med efficacy?

Anyway, my stress at having meds not work like they used to over the course of only one year led me here. I stumbled upon this forum while researching duodopa.

I'd just like to say...I really love the proactive attitude of the members here and the research oriented posts. I've learned so much in the past couple hours- thank you! For example, Heidi, I had never heard of a herpes PD connection. Debi, your trace of the research process is invaluable.

I feel both hopeful and angry. Angry at the world for there seems to be so many possible avenues in which to attack this disease and we're mired in an outdated research paradigm. Angry at myself for becoming complacent in accepting the status quo- I had all but given up on natural supplements like mucuna and COq10- my neuro doesn't dismiss them, yet she is dubious, stuck in a clinician's mind set. Wouldn't she be trying everything possible if she had PD or a loved one had it?

Anyway, I joined here feeling pretty helpless, but after lurking here for an hour, I am ready to take charge again of what little control I do have over my body. Thanks for helping me realize that my fire really has not gone out

-Laura

Hi Laura,
I'm new to this forum as well. Debi was actually kind enough to direct me to your post. Like you I was diagnosed with YOPD when I was pregnant with my first daughter at the age of 27. She's turning 11 this September and I've had two other beautiful girls in between - it's a full house!
I agree there is very little research into the field of PD and pregnancy - a not so common combination I guess! In my own experience, my symptoms did progress more quickly with each pregnancy. At first I thought I was just noticing the tremor and stiffness more because I essentially stopped most of my medications, but it became readily apparent that it was really the PD itself that worsened. Not that I wouldn't go through it all over again - they are a true blessing and are probably the best medication to keep me motivated and moving!
Laura, I know how emotional this challenge is, how frustrating it is to lose control over your body. But it is what it is and there really is no choice but to tackle it head on (especially when there are little ones we have to be there for) , to focus on the aspects of our health and our lives that we do have control over. To turn that feeling of helplessness to hopefulness because as flawed as the system may be, there is a research community that is working hard to find a cure. And thankfully the process is being expedited by organizations like the Michael J Fox Foundation.
So stay focused on your health and your beautiful new son!
Wishing you the best,
Soania

Hi laura.Talk about good news bad news; life seems so unfair. I am so glad you find help here and please know that a positive compliment helps us not to give in to paranoia. It's a two way street. you're right - not too much on pregnancy and pd. Are you by any chance keeping a journal?Wish you weren't here but on the other hand, a difficult, purpose_driven life is truly rewarding and there are ways to find your niche _ just your story can provide information for others in the same situation.Not that you have any extra time or energy. But keeping even brief notes or posting them (don't worry about whether anyone responds) as docjohn said, "the majority come here to read"One question. Are you by any chance going thru a natural early menopause since the baby's birth?I know there is a new name foir menopause but don't remember it.Paula

Hii soania,Connections already being made. Another struck down heartbreakingly early. Thanks for joining the conversation and your open, warm post.I had an early menopause after the birth of my second child, along with hypothyroid, irritatible bowel, and parkinson's followed. I breastfed both children until they were two. (Eventually just at bedtime.) I could have had pd when giving birth to one or even both of them so this hormonal connection is important.Sorry I only have a blackberry _bad formatting.Thanks for being here. We are proactive about patient contributions to the knowledge base. I wonder if pregnancy and/ or extended breastfeeding can initiate a series of events leading to parkinson's, especially those that occur at later ages (I had mine at age 33 and 35.) So welcoming a different biological terrain and hoping to learn from each other so that our children and grandchildren. who. already inheriting a far less safe world have one less thing from which to suffer. Is there a pregnancy/hormonal connection yet undetermined due to its young onset. Hope to help and learn,Paula

[QUOTE=Soania;534279]Hi Laura,
I'm new to this forum as well. Debi was actually kind enough to direct me to your post. Like you I was diagnosed with YOPD when I was pregnant with my first daughter at the age of 27. She's turning 11 this September and I've had two other beautiful girls in between - it's a full house!
I agree there is very little research into the field of PD and pregnancy - a not so common combination I guess! In my own experience, my symptoms did progress more quickly with each pregnancy. At first I thought I was just noticing the tremor and stiffness more because I essentially stopped most of my medications, but it became readily apparent that it was really the PD itself that worsened. Not that I wouldn't go through it all over again - they are a true blessing and are probably the best medication to keep me motivated and moving!/QUOTE]

Hi Soania,

Thank you for connecting (thank you, Debi for directing). It's already tough having PD at a younger age, dealing with social pressures, and finding that others just cannot really understand what we go through each day, but it's nearly impossible to find others who have faced the fears of PD through the lens of pregnancy. I think it's fantastic that you were able to have three children! I'm a late bloomer, so my little guy is it for me- besides I don't think I could handle it again.

Thanks too for sharing how pregnancy affected your PD symptoms. In my case, I was hoping it was just a medication issue that we could adjust, but I am beginning to think that my PD has permanently amped up a bit too. I agree with you that it was worth it; my son is a joy! Still, as I'm sure you worry too, negative thoughts creep in, and I am concerned that I won't be able to keep up with him in five or seven years <sigh>. Anyway, as you've probably learned, PD has a way of leading us back and "grounding" us in the moment, so we learn to focus on each day, and more importantly, learn to cherish our time with loved ones and to not take anything for granted. With organizations like MJFF continuing support of promising new trials like Ceregene's, I still feel hopeful.

Thanks again for the positive thoughts! I hope we can contribute more of our stories and experiences out here. I think that in choosing to have children, regardless of the PD, we might show to others with early onset PD that it is still possible to experience all that life has to offer.

Best,

Laura

I absolutely agree Laura, PD is very grounding. Without the diagnosis I often thing my Type A personality would have taken down a very different path, with my career dominating my life. But since my diagnosis, my priorities have changed, my career has become a part-time job and my focus is by far, my family and my girls. Who knows what the future holds? But I'm ready to face it head on! (sorry to diverge away from the focus of this thread!)