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Pregnant with parkinson plus syndrome....anyone else????

parkinsonism pregnancy

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#1 csullivan11

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Posted 27 September 2012 - 07:57 PM

Hi everyone.I am 43 years old and 15 weeks pregnant. I have searched the internet for info and it is very limited. I was diagnosed at 39 with atypical parkinsons and sent to a movement disorder specialist. I could not move my left arm or open my left hand until I began taking Sinemet. I also had difficulty with my left leg and stumbling, stiffness and horrible cramping pain only on the left side. Now that I am pregnant, which was a surprise, my Sinemet has stopped working. I tried to wean off due to the unknown effects on the fetus, but my body would not cooperate, Just trying to find anyone who may have gone thru pregnancy for insight. Thank you.

#2 jb49

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Posted 28 September 2012 - 04:06 AM

hi csullivan,

obviously I haven't. But Shaky Spice did. She is the best read, most informed, and deepest researcher this forum has seen. If you private messaged her, you might find her. She could answer your questions I'll bet,

Good luck. jb
Don't be hard on yourself, try your best and be strong!

#3 KiminJapan

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Posted 28 September 2012 - 08:00 AM

She's on the neuro talk forum as inspector61 I think her name is.

#4 xaxa

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Posted 29 September 2012 - 06:39 AM

Yes! Been there done that! I was diagnosed in 2004 with YOPD and had my first child in 2006 off meds. My 2nd was born in 2010 while I was on sinemet. My neurologist at the time (a MDS at Baylor; an expert in the field, ahem;) told me that while there are no formal studies on women on pd meds & pregnancy that in his practice he's had many women on sinemet give birth and there have been no issues with the babies... I was on a LOT more sinemet during pregnancy than after delivery...
Good luck & congrats! And feel free to contact me "offline" with any other questions! :)

#5 christie

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Posted 29 September 2012 - 06:08 PM

Congratulations from me too!

great advice from xaxa. she has sure been there and done that + she is a doctor.

about your diagnosis : parkinson's plus is a very very rare diagnosis-almost nonexistent-in someone under 40 (you were 39 when diagnosed). are you absolutely sure that you have some kind of Pd plus syndrome (like MSA, or PSP or corticobasal degeneration). some neurologists, and especially those who are not movement disorder specialists-may refer to cases of young onset parkinson's as "atypical" mainly because they do not present like the typical 60+ year old patient with rest tremor. a definite diagnosis of a PD plus syndrome requires additional symptoms-besides rigidity, tremor and dystonia- such as blood pressure problems, extreme balance issues, to name a few,plus a very very rapid progression and an inadequate or short-lived responsiveness to PD meds, or no response to meds at all ! the fact you are already 4 years into this disease and still responding-pregnancy aside-to l-dopa is a very good sign. as xaxa suggested you may just need to up your l-dopa a lot during pregnancy for symptom control !

so, welcome, good luck and keep us posted !

PS : i am 36 year old with YOPD. still drug naive. mainly because i'm trying to become pregnant. my own neurologist suggested i should begin treatment and prescribed madopar ( l-dopa like sinemet). l-dopa seems to be the safest option of a pregnant woman with PD.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#6 SandyD

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Posted 30 September 2012 - 09:38 PM

Hi my name is Sandra and I was diagnosed with Parkinsons at age 32. I started with symptoms 2 years prior to that (age 30). So I've had it since I was 30. Now I am 50 and during the past 20 years I had 2 miracles... my two healthy babies! My son who is now 15 years old and my daughter who is 10. They keep me going and have kept me alive, I don't have time to be sick.
And yes I took Sinemet during the entire time I was pregnant, with both. SO DO NOT WEEN yourself off of NOTHING GIRL. I understand it not being comfortable and pregnancy is uncomfortable enough without having to suffer your parkinsons symptoms also!
I am not a doctor but... I am a parkinsons patient with 2 healthy awesome children.
If you would like to chat more I can give you my telephone number. I am not sure how to navigate around this forum I just registered to answer your question. So I will have to make myself more familiar with this site.
God Bless you and your baby.

Edited by sghopeful003, 30 September 2012 - 09:54 PM.

Live, Love and Laugh every day!

#7 jb49

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Posted 01 October 2012 - 07:16 AM

Aw, nothing sweetens my day like seeing you Ladies rally around each other with supporting words and information. And modest Christie is a doctor too. Nice!
Don't be hard on yourself, try your best and be strong!

#8 Nospringsaussie

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Posted 20 October 2012 - 03:55 AM

Congrats. I have nothing but admiration for your compassion and inner strength to take on this challenge at the same time as your daily life challenges.

#9 csullivan11

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Posted 01 April 2013 - 01:39 AM

Update!! Sorry it took so long to reply. Thank you all for the wonderful advice and support. My beautiful daughter was born Feb 19th...almost 6 wks early due to preeclampsia and placental abruption. She weighed 5lb 7oz! No major difficulties other than eating. She spent 10 days in the NICU and was able to come home. She now weighs 7lb 5oz. Other than an umbilical hernia and acid reflux she is a very healthy, happy baby. I did have increased and worsening parkinson's symptoms as the pregnancy wore on. My sinemet dose was increased several times and I had physical & occupational therapy. A brace was made for my left hand and left foot which helped ease the cramping at night. I am now 6 weeks pp and my parkinson's symptoms remain the same. The dr says it is too soon to tell if the increased symptoms will be permanent. My blood pressure remains high and my blood pressure medicine has been tripled. My heart rate continues to fluctuate from high (105) to low (50). Prior to pregnancy I had extremely low blood pressure. The Sinemet only works for a few hours after dose. The dr wants to wait to increase/decrease until I am 12 wks pp. when all of the hormones are out of my system. It was worth every second. I have good days and bad days, but all I have to do is look at her and it pushes me through. I have had to adapt my parenting abilities to accomodate my physical disabilties. I have had quite a few people tell me it was irresponsible and unfair to have a child while I am "sick". There are many disabled parents who have overcome physical challenges harder than mine. I may have to work harder than others at basic tasks, but my children will grow up with love and an understanding that you can accomplish anything you put your mind to. To others contemplating pregnancy.....follow you heart.

#10 christie

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Posted 01 April 2013 - 03:26 AM

What a lovely, heart-warming post !
Congratulations for your beautiful daughter!!!
We are so happy for you !
I hope i will join the mum-with-PD club soon (i am too trying for a child...).

You are absolutely right that there are many disabled parents with much harder psysical challenges than parkinson's. i know of a paraplegic mother of five (she had ALL her children after the accident that caused her disability). All doctors had told her that her body wouldn't tolerate pregnancy, and that she would risk her life if pregnant. she sure proved them wrong... she had FIVE beautiful children...All grown up now into healthy, responsible adults. The most beautiful family.

I think the key is to try ignore our disease and go on with our lives as if PD was not in the picture. Easier said than done, and i myself am not "there" yet. Fear is our number one enemy ! And too much "looking-into-the-future"....have to get rid of my crystall ball...

Edited by christie, 01 April 2013 - 03:26 AM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#11 Rogerstar1

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Posted 01 April 2013 - 11:03 AM

To me, the very notion of trying to have a baby with knowledge one has Parkinsons Disease, let alone PD-plus, let alone a second and third child strikes me as selfish and irresponsible...in a word, absurd. There...I've said what an awful lot of cowed contributors and parents must be thinking. Somebody had to step up and knock your silly rose colored glasses off or try to. Nary one of you reports having a husband or significant other 'in the picture' or explain who will pay your own insurance premiums (and the childs), graduate school tuitions and handle myriad late stage parenting duties - just an observation - maybe you have it all figured out, maybe you best think twice. One does sense an air of hostility in some well written comments on these pages by certain educated folks, present company excluded. I appreciate them and have benefited from them, too. Thank you. You should consider, please, that a measure of contentment living with PD, sans anger and continuing to make a contribution to society's betterment rather than becoming a burden sooner, involves the careful, graceful acceptance of one's limitations.

Orphanages teem with teenagers to adopt and as such are an opportunity to parent, love, shape and mold into responsible adults youngsters who desperately need the help you can provide to them. That's what we did and it has worked out beautifully for everyone.

Edited by Rogerstar1, 01 April 2013 - 11:15 AM.


#12 jb49

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Posted 01 April 2013 - 02:46 PM

OMG Roger, You, like me and everyone else have a right to express an opinion on these pages but with that right comes a responsibility to deliver that opinion with some grace and empathy. As for husbands and significant others and such, that is not your place to ask. Obviously there are many things to consider and probably are thought about extensively. And sometimes things just happen. The bottom line is, most women like to have thier own babies if possible. You just offended many very nice people who want to or have had babies born to them. I am going to assume that the urge to blurt out opinions that hurt people's feelings is a symptom that may of happened to you as a result of your PD and I am sorry for that. Obviously you are a very intelligent man. Maybe you should read your posts carefully, think it over, count to ten and only send it then if it still seems okay.
Don't be hard on yourself, try your best and be strong!

#13 christie

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Posted 01 April 2013 - 03:06 PM

Roger, your post was nothing but a blunt, insensitive, misanthropic and chauvinistic insult, not only to csullivan-i can only hope she will simply ignore it- but to all women. i don't want to believe you are such a man. i seriously think you should discuss with your neurologist the possibility of a personality disorder brought on by meds or DBS.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#14 Rogerstar1

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Posted 01 April 2013 - 03:29 PM

ROGERSTAR RESPONDES IN CAPS TO JB;

OMG Roger, You, like me and everyone else have a right to express an opinion on these pages but with that right comes a responsibility to deliver that opinion with some grace and empathy. THANK YOU. As for husbands and significant others and such, that is not your place to ask. I DIDN'T ASK. BUT WHY WOULDN'T IT BE APPROPRIATE TO INQUIRE ON SUCH A MATERIAL POINT? Obviously there are many things to consider and probably are thought about extensively. AND SELFISHLY? And sometimes things just happen. UNPLANNED PREGNANCIES AND THOSE RESULTING FROM FAILED BIRTH CONTROL MAY OR MAY NOT BE LAMENTABLE BUT WERE EXCLUDED FROM MY COMMENT WHICH SPECIFICALLY FOCUSED ON WOMEN THAT ARE TRYING TO GET PREGNANT. The bottom line is, most women like to have thier own babies if possible. You just offended many very nice people who want to or have had babies born to them. I'M CERTAIN THEY'LL LET ME KNOW. I am going to assume that the urge to blurt out opinions that hurt people's feelings is a symptom that may of happened to you as a result of your PD and I am sorry for that. MINE WAS NOT A 'BLURT' BUT AN INFORMED, CONSIDERED STATEMENT OF WHAT I BELIEVE, CHARACTERIZING IT AS YOU CHOSE TO, CHALKING IT UP TO OUR DISEASE SEEMS GRACELESS FROM MY PERSPECTIVE. Obviously you are a very intelligent man. Maybe you should read your posts carefully, think it over, count to ten and only send it then if it still seems okay.

MAYBE YOU SHOULD READ MY POSTS MORE CAREFULLY BEFORE TAKING CONDESCENDING POT SHOTS.
WHICH ARE INTENDED TO OFFEND.

THE THOUGHT DOES OCCUR THAT THE FORUM BOARD FOR OLDER, MORE EXPERIENCED PWPs IS SEPERATE FOR A REASON; OUR POINTS OF VIEW (WISDOM, DARE I SAY?) MAY NOT GO DOWN EASY WITH NEWCOMERS AND THE RECENTLY DIAGNOSED BUT THAT SHOULDN'T SUBTRACT FROM THEIR CONSIDERATION OR , ARGUABLY, THEIR SALIENCE/EFFICACY.

Edited by Rogerstar1, 01 April 2013 - 03:38 PM.


#15 Rogerstar1

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Posted 01 April 2013 - 03:33 PM

Christie - What kind of doctor are you? Just askin'....:-)

#16 csullivan11

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Posted 01 April 2013 - 04:02 PM

Thank you everyone for your replies..including Rogerstar1. I did not post my personal background as I did not feel it was relevant to the question I was asking. As my original post stated,,,the pregnancy was not planned and yes we were using precautions. (Not that I feel the need to justify that to anyone.) And Yes Roger I have a husband, a very supportive family and friends. I do not have a specific time frame or expected date for my symptoms to worsen or take my life. I live my life everyday to the fullest and best of my abilities. I believe only God knows when it will be my "time". I do feel you posted many valid questions for people (sick or not) to consider when bringing a child into the world. Finances, family/spousal support, life expectancy, quality of life, etc..... All things considered, there is no shortage of people in my life who would help in an instance if it was needed. I do not "rely" on someone else to support me, my children or expect anyone to do so. Out of love and family, I would do the same for any of my close friends and relatives in a time of need as they would for me. I am a strong determined woman and do not give in to my illness....EVER. I do not wake up and say what my limitations for the day will be...only what my accomplishments will be. And to play devil's advocate..No one knows when it is "their" time. Many parents are lost in accidents, disabled or worse everyday. Should they not have brought a child into the world under the "possibility" something might go wrong?? There is no crystal ball for the future. I feed her, change her, bathe her, buy her formula, diapers, clothing etc....just for the record. The only advice I would give everyone is you don't know another persons story (full story) ask for it...I made this post for others who were potentially considering pregnancy or finding themselves with an unplanned pregnancy. Not many people have been pregnant with this disease and I wanted them to learn/benefit from my experience. Thank you all again...and don't stress on Roger too much..he has his right to an opinion just like the rest of us. My choice was personal and I don't regret a thing!

#17 Sean

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Posted 01 April 2013 - 04:47 PM

Update!! Sorry it took so long to reply. Thank you all for the wonderful advice and support. My beautiful daughter was born Feb 19th...almost 6 wks early due to preeclampsia and placental abruption. She weighed 5lb 7oz! No major difficulties other than eating. She spent 10 days in the NICU and was able to come home. She now weighs 7lb 5oz. Other than an umbilical hernia and acid reflux she is a very healthy, happy baby. I did have increased and worsening parkinson's symptoms as the pregnancy wore on. My sinemet dose was increased several times and I had physical & occupational therapy. A brace was made for my left hand and left foot which helped ease the cramping at night. I am now 6 weeks pp and my parkinson's symptoms remain the same. The dr says it is too soon to tell if the increased symptoms will be permanent. My blood pressure remains high and my blood pressure medicine has been tripled. My heart rate continues to fluctuate from high (105) to low (50). Prior to pregnancy I had extremely low blood pressure. The Sinemet only works for a few hours after dose. The dr wants to wait to increase/decrease until I am 12 wks pp. when all of the hormones are out of my system. It was worth every second. I have good days and bad days, but all I have to do is look at her and it pushes me through. I have had to adapt my parenting abilities to accomodate my physical disabilties. I have had quite a few people tell me it was irresponsible and unfair to have a child while I am "sick". There are many disabled parents who have overcome physical challenges harder than mine. I may have to work harder than others at basic tasks, but my children will grow up with love and an understanding that you can accomplish anything you put your mind to. To others contemplating pregnancy.....follow you heart.

Lovely! Congratulations!
Sean

#18 christie

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Posted 01 April 2013 - 05:04 PM

Roger:

-There is no separate forum for "older" "more experienced" patients with PD. You are confusing late onset PD with late stage PD. The open forum is for all patients-with early or late onset PD-while the young onset forum only for patients with onset of disease before the age of 50 years-regardless of their current stage of disease.For example, if a patient is 70 years old, 30 years into his disease, he is still a patient with young onset parkinson's.

-Everybody in this forum-newcomer or not, doctor or not-knows that PD drugs may cause impulse control disorders, depression, mental confusion, hallucinations, psychosis...

PS: what kind of doctor am I? the caring kind, i guess.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#19 OneWingedVictory

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Posted 01 April 2013 - 05:50 PM

Roger

I do not typically engage in debates on this forum as I find there are plenty of conflict-driven matters to deal with in "real life," but I, like Christie and jb, was offended by the content and tone of your post above. Therefore, I feel compelled to comment.

The purpose of this thread as initiated by csullivan11 was to solicit and exchange information about medically and practically managing Parkinson's while pregnant. it was not a philosophical debate about the ethics of having a child while being treated for a neurological disorder, or having multiple children, or raising children in a disabled household. Such a conversation would be better conducted under a separate thread.

Having determined to voice your opinion on this topic here, however, the points you made were neither careful nor graceful (to use your own words). Instead, you made a number of assumptions in your arguments which evidenced misogynistic and class biases, to wit: that a single woman must have a partner to responsibly care for a child, that a single woman requires assistance to fulfill her financial obligations, that women need to be reminded to "think twice" before making major life decisions, that providing a graduate school education is a parental responsibility (and, by extension, a social good).

I appreciate the fact that we are free to express differing views on these forums. Nonetheless, some degree of sensitivity and empathy should be utilized, particularly when making points that one can reasonably expect will be viewed as harsh or unhelpful -- as you clearly understood when submitting your post. At minimum, you might have alerted the readers that your post was "off topic."

You said it best, Roger: "You should consider, please, that a measure of contentment living with PD, sans anger and continuing to make a contribution to society's betterment . . . involves the careful, graceful acceptance of one's limitations." Your post today contained more than an "air of hostility;" it was angry and hurtful. More importantly, it did not contribute to the betterment of our PD society.


The One Winged Victory of Samothrace is a metaphor for our struggles, despite the odds, to keep steady and accept grace in the face of punishing adversity.

#20 Luthersfaith

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Posted 01 April 2013 - 07:12 PM

"misogynistic"


The silver lining in this for me is that I learned a new word! Thanks OWV.

Peace to all and may we all keep learning.

Roger, any way this as to do with April 1?

Edited by Luthersfaith, 01 April 2013 - 08:13 PM.

"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)





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