Posted 27 September 2012 - 07:57 PM
Posted 28 September 2012 - 04:06 AM
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
Posted 28 September 2012 - 08:00 AM
Posted 29 September 2012 - 06:39 AM
Good luck & congrats! And feel free to contact me "offline" with any other questions!
Posted 29 September 2012 - 06:08 PM
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.
Posted 30 September 2012 - 09:38 PM
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.
Posted 01 October 2012 - 07:16 AM
Posted 20 October 2012 - 03:55 AM
Posted 01 April 2013 - 01:39 AM
Posted 01 April 2013 - 03:26 AM
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.
Posted 01 April 2013 - 11:03 AM
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.
Posted 01 April 2013 - 02:46 PM
Posted 01 April 2013 - 03:06 PM
Posted 01 April 2013 - 03:29 PM
MAYBE YOU SHOULD READ MY POSTS MORE CAREFULLY BEFORE TAKING CONDESCENDING POT SHOTS.
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.
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.
Posted 01 April 2013 - 04:02 PM
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.
Posted 01 April 2013 - 05:04 PM
-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.
Posted 01 April 2013 - 05:50 PM
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.
Posted 01 April 2013 - 07:12 PM
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.
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