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Feisty Folder

Important questions with a TOO MUCH INFORMATION warning for the second half

8 posts in this topic

 No TMI yet

There is a warning about a third of the way down where the TMI starts, I really would appreciate your help

TL,DR

Or to avoid the TMI

I want information on: how do female hormonal flucations and PD interact ?  How do birth control pills and PD interact? How does PD misbehave after surgery/ how long? How to manage PD constipation after abdominal surgery? Personal accounts are wonderful for my piece of mind, please post them, but if you know of any studies those would be great to educate my pompous surgeon

 

TMI starts now

TOO MUCH INFORMATION warning read at your own risk though I really would appreciate your help

 

 

I'll post  moreabout what's going on soon but for tonight I have a few questions:

How many of you find that you're menstrual cycle makes your PD symptoms worse? I'm  specifically interested in   symptom  worseing immediately before and/or at the very beginning of your period, Though all replies are appriecated. What are your experience with menstruation and PD and how they interact?

If you have any experience with hormonal birth control and PD I would appreciate your perspective- did it effect your PD symptoms and in what way? What kind of birth control did you use? Did any of it give you nausea?

Does anyone know anything about what the hormonal flucations following the removal of an ovary and/or cyst can do to your pd? Studies or personal experience is equally appriecated. And if you didn't have PD flucations how long did you experience clear hormonal flucations after surgery? ( Heavy, early, or late periods,etc) 

 

How does surgery in general effect your PD symptoms and for how long? Has anyone else experienced their meds becoming less effective?

 

Does anyone here know how PD and endometriosis might interact? Studies or personal experience are welcome

 

 

(TMI) l know surgery and medications can increase constipation, but I swear what I am currently experiencing is the PD thing where the muscles at the end of your digestive track are uncoordinated and muscles are locked down not allowing anything out. (My stomach is loud ,  things are definitely moving, just not towards the exit) I think this problem is both worse than usual and also since I just had surgery I can't use alot of my coping mechanisms like rubbing my belly, vigorous activity etc. I'd like to avoid Botox injections or becoming dependant on enemas (that are only slightly better than nothing)  to resolve this. Anyone's have any short term suggestions to getting and keeping things moving that won't require breaking DR's orders or causing serious pain? (I'm so desperate a minimal or moderate pain would be acceptable, but pain free is perfered) also I'm already taking stool softeners and two types of oral laxative

 

More than anything I'm looking for information to help me work with my GYN, who is a PD novice, and help me recover with minimal misery

Thanks you all in advance, even if  your experiences are nothing like mine, even if you're a dude who just happened to read a relevant study  last week, thank you!  I'll try to write a more coherent post tomorrow explaining why I suddenly reappeared asking All these questions

For now, I'm so grateful this resource is here and I hope everyone's doing okay

-Fiesty

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Feisty,

i can only give you suggestions on the constipation side. I've been dealing with that issue long before I was diagnosed with PD. I've been taking pain medications for the last 10+ years. PD just makes the problem worse. I used to live on stool softeners but I discovered a long time ago that if you use them for an extended period of time they will actually have the opposite effect on you. Miralax and the applesauce (1 tbsp applesauce, 3 tbsp wheat germ, and a dash of cinnamon) concoction seem to work the best. I still go through bouts of constipation that have lasted 7 days before I see any movement. 

Being that it's Easter, I will tell you that I have found a lot of jelly beans can get things moving.

Hope you feel better.

 

Dave

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Miralax works best for me. But I do understand the problem of your brain sending the wrong message and stopping things up! Haven't found a solution to that problem. Luckily I am beyond the menstrual issues and hormones. Good luck finding a knowledgeable gyn who will listen.

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I definitely notice changing symptoms with my cycle.  My symptoms are the most managed for me when I am menstruating, in fact I feel almost normal even before my meds and that usually kicks in within an hour of the start of menstruation.  Makes me look forward to getting my period:-) I stay pretty good until after I ovulate and then my symptoms get worse for the next week and then improve a bit the week before mentruation. Is this similar to your experience?

 

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"Pure" prune juice, butter, warmed.......

Prunes themselves are usually a good "mover."

A much more "fun" idea is some dark chocolate!    :-D   it works, if you are not too "far gone."

Edited by ellaangel2

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I have a book suggestion for the women on the forum: Parkinson's Diva, A Woman's Guide to Parkinson's Disease by Dr. Maria DeLeon. She is a neurologist who also has PD.

https://www.amazon.com/s/?ie=UTF8&keywords=parkinson's+diva&tag=mh0b-20&index=stripbooks&hvadid=14303624856&hvqmt=e&hvbmt=be&hvdev=c&ref=pd_sl_77b2emov4a_e

From the back cover of the book: "...she also shares the personal concerns and gender-specific issues that live with this disease must face."

Dianne

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Alright- first happy Easter! second, now that it isn't five am, a slightly better explanation of what's going on.

 

( note from several hours in the future- I just finished writing this and there are going to be plenty of mistakes, I have surgery brain at the moment. Also plenty of ranting and rambling. The pastor talked about fish stories today, so I won't fib and blame that on the surgery. There's a huge chunk of ranting, I'll mark when it starts and ends so you can skip it. And thank you everyone, for “listening” and especially replying. I'm the only female young onset-er I know in real life. I can find commiseration on everything else that is going on, but PD stuff has me feeling alone, even though everyone is trying to listen and understand. And I just rambled somemore didn't I? Oh well)

 

I haven't felt fully well since just before New year. What I didn't blame directly on the stress of becoming mom's caregiver, I blamed on stress making PD symptoms worse. The most specific symptom I could have given you until three weeks ago today was fatigue and some mild stomach upset. Than three weeks ago I went to the ER with severe abdominal pain, where they found an ovarian cyst the size of a softball. Given that I had a clear ultrasound in November that was really dumbfounding.

 

Since I have written out most of what happened between that ER trip and last Sunday on my blog, in a less rambly way, I'll just give a link for anyone interested- https://www.dementiapuzzle.com/

 

Last Sunday I went to the ER in terrible pain and my surgery got moved up to Wednesday as a result.

 

Two hospital discharges and one more ER visit later, on Wednesday I finally had surgery.It started out laparoscopically but ended up being an open procedure. They took the cyst and ovary and discovered that as opposed to the original diagnosis, that the cyst was really a large endometrioma. (Which is a giant hunk of endometriosis, I refuse to explain endometriosis today) The surgeon also found multiple smaller patches of endometriosis stuck to various organs. He removed most of what he saw, with the exception of the endometriosis on the other ovary. Since my surgery, my Parkinson's symptoms have been much less controled, not in a pain or stress way, but in a way I associate with hormonal flucations. The reason I haven't gone on birth control before now to control those fluctuations before is because, like lenamegan who replied earlier, my very best PD symptom days are when I have my period, for a day or two from my first full day of menstruation, I feel like I could skip my Sinemet I feel so well. However for me my absolute worst days are the day or two leading up to it. And I couldn't find any hard evidence that birth control would improve things- I thought it might even make things worse- I've read that a study exists but I've never seen it. Plus another medication didn't seem worth the risks of side effects.

 

Now however my GYN wants me on birth control for the endometriosis. He's the best GYN surgeon in the area and that is absolutely the only thing he has going for him.




 

/ Ranting started here and interia kept it going a looooong time. Feel free to skip to where it says end rant/





 

It's not even his terrible bed side manner, I've seen much worse and liked those DR's. Bedside manner is a skill just like surgery and you can guess which skill I want my surgeon to have practiced the most. It's more that he won't listen, and he seems to be oblivious to the idea that a 32 year old female can posses any health issues other than lady problems. I told him repeatedly I have sleep apnea, yet when the surgery was going to be laprosocopic the plan was for discharge to happen a couple hours after surgery (it seems my surgeon never heard the word “centetral” I kept putting in front of sleep apnea) It only took all of two minutes for the anesthesiologist to realize I was a moderately high risk patient. The anesthesiologist excused himself, talked to the surgeon, then returned announcing I would be staying a minimum of one night. That conversation happened an hour before surgery. The gas man also didn't assume I was an idiot, when he gave me the consent paperwork he said “I assume from the way you listed off your ansteshia risk factors first you know you're at higher than average risk for surgery” YEP!

My best friend who's been caring for me through this, said from the first appointment with the surgeon “I don't think he's taking your other medical conditions seriously” maybe he thought I was a self diagnosising hypochondriac (I wish) probably the most generous senerio I could think of on the ansteshia issue would be that maybe he always let's the anesthesiologist fight that battle with the insurance company out of a hatred for paperwork, but then you'd think he'd say something like “ the anastesha  guy is probably going to decide that you need at least a one night stay, but I always let him make the decision because that's his speciality” at least that's what he would say if he weren't a pompous jerk

 

He's also an arrogant jerk. He assumes he knows everything without even asking pertinent questions. The best example is out of the blue telling me I needed to get off a medication I've been on for ten years because “that will make you sleepy and keep you from doing anything, from being active, you'll just sleep all day” the only information he'd received from me about that pill was medication and dosage from the new patient forms. He saw I was taking the medication, saw I've been lethargic for the whole 18 days he's known me, and decided he'd discovered the cause. For the record in the past ten years I've had times I was extremely lethargic and times I was biking 10 miles a week and swimming 12. The dosage remained unchanged.

It's as though everything he says and recommends is based on population level statstics, with no consideration of the individual in front of him. His success rate doesn't indicate he's reckless.  If anything the complaints around my small town are about him being over cautious, doing more extensive surgery to ensure no serious complications, berating some woman for choosing natural childbirth after cecerian, which is also another great example of his winning personality. After writing this out I think he believes everyone else is too dumb to have informed consent.

 

He also seems to assume everyone is exaggerating about their condition,  (like when he told me to wait another hour before going to the ER, to see if my pain improved. I was screaming in agony and vomiting at the time and was an hour away from another dose of any kind of oral pain meds. Also, four years ago, I refused to go to the ER after being hit by a car, if I'm so much as hinting at the ER things are bad).

I think another problem he has is believing people are self diagnosising. On my patient forms I put Parkinson's disease instead of parkinsonism because most  non-nerologists seem to think it's okay to give drugs that are bad for Parkinson's disease if you just have parkinsonism. When the surgeon asked about it I explained the official diagnosis was parkinsonism, that while my Neurologist's best guess is PD he wants to follow me for longer than a year before making a definitive diagnosis (because, unlike my surgeon, my Neurologist doesn't want to diagnosis me after five minutes with one thing and than “surprise!” it's something else. For the record, my surgeon made it seem like the only two possibilities for my cyst were a benign mucus filled cyst or a cancerous mucus filled cyst. I specifically asked him to me to walk me and my friend, who is my medical proxy, through the surgery, giving us different possibile paths based on likely contingencies, so my proxy and I could discuss what decisions I wanted to be made. Endometriosis was not mentioned at any time prior to surgery. I'm usually much more forgiving about such mistakes, medicine is art and science, but if you're going to be that uncaring about your patient, you'd better be right every single time; unhappy paitents sue. My brain surgeon had fewer social skills than this guy, but at least the brain surgeon made reasonable efforts to ensure I was comfortable and stayed healthy before and after surgery. Prior to surgery this surgeon kept ignoring us when my friend and I told him I was not eating or drinking, despite showing up in the ER twice with electrolyte imbalances and dehydration in addition to agonizing pain. He kept discounting our concerns. After surgery, once he was significantly more liable in a law suit, he was very concerned about how little I was eating. my friend said she had to bite her tongue until it bled in order not to yell at him that I was now eating three times what I had been prior to surgery.) Where was I? Right Parkinsonism vs Parkinson's disease. Had my surgeon bothered to call my Neurologist, the neuro would have told him to operate under the assumption I have PD, just like my brain dude has told other doctors to do. My Neurologist prefers that to having to yell at them after they've already given Reglan. But instead of calling the specialist who spent a several extra years studying just so my surgeon doesn't have to know everything, what does the jerk do? He never contacts my Neurologist, (I've stayed in contact with my brain Dr through this so I know the surgeon didn't speak to him, and yes I gave him the information) instead, my surgeon decides to explain to at least 3 staff members, that I am aware of that, as the staff put it “and the surgeon explained how you wrote on the paperwork you have PD but really you just have similar symptoms” way to get the staff on my case to take the NPF no-no medication list seriously jenious surgeon ( those lists are awesome by the way, tear one off the pad, hand it to the person and say it's fine if you keep it, I have plenty. Order your aware in care kit today!) Anyway one of the people he told I only have Parkinsonism to refused put anything I hadn't had a reaction to down as an allergey. You have to take something to have a reaction to it, people! Still I feel like most of non-surgeon crazyness I endured through this are just common problems with any system run by failable people, healthcare bureaucracies are going to make you crazy no matter where you are. I felt like 90% of the people I dealt with were doing more than required, 5% just meeting standards, and 5% need a new job, or a personality transplant. And I have to say that ever single person I'd given an aware in care slip to gave me my meds on time. The one-time I got it late, it was a nurse who'd came on duty while I was asleep.Another nurse even apologized profusely for bringing my pain meds forty minutes late, she wasn't entirely certain if it was okay to be a little looser with that, but she knew how little I'd been sleeping, and she figured that since I was asleep when pill time came, I wasn't hurting and it was more important for me to rest “since it's not your Parkinson's meds” I told her she'd done the right thing. For the record, I love people who are willing to learn, and to admit they don't know everything. I loved every single nurse and aide I met through this. They are amazing people being asked to do way to much. One nurse, who met me first thing in the morning, when I was “off”, was ready to give the noble prize to Sinemet once she saw me “on”. She repeatedly told me how happy she was that it was effective for me. Having tried to function in multiple off periods through this I have to say it was a good reminder of what a blessing CL is. The strawberry kool-aid jello at the hospital was awful though. And I have a few strong words for a couple people higher on the totem pole.

Getting back to my surgeon rant,   I feel like his final flaw as a doctor comes down to misquoting Occam's razor as “the commonest solution is usually correct” as I said before his theories seem based in pure statistics, at least when it comes to anything outside his expertise, plus his ego prevents him from asking for help. The nurses tried for two days to get him to order a evaluation for my swallowing issues since I was struggling, he never did. Fortunatly I have an awesome SLP who came to talk with me “as a friend” several times, then marched down to dietary and told them what they needed to do to support me. Otherwise I would have been consuming nothing but thickened liquids and jello until discharge. In short my surgeon is an expert on lady parts, a bonehead about everything else in the universe.






 

/End Rant/





 

/End extremely long surgeon rant, hopefully I'll be sleeping better after getting that off my chest/


 

I did not expect to rant like that, I feel better though

 

TL: DR my surgeon is a pompous arrogant jerk, whose talent doesn't out weigh his flaws. His only benefit now was how soon he could see me and proxmity. I was in too much pain to wait or travel

 

So I will be getting a new gyn, once follow up is finished; someone with surgical skills in case my endometriosis recurs.

 

Someone who can shut his mouth and open his ears, and talk to my other drs. (My primary warned me the surgeon is terrible about sending updates, now I see why. He doesn't want another physians input, why would anyone else?)


 

So back to what caused me to post when I couldn't sleep last night

 

I'm going to need to somehow prevent recurrence of endometriosis. I googled Parkinson's and birth control pills but the closest I got was a study showing a link between how many years a woman is fertile to her PD risk. I'd love it if I had hard evidence or even antidotal experiences as to what to expect with all this. I've had enough surprises the past two years.

 

And I didn't explain what prompted all this. yesterday was my worst PD day in which I took my meds on time, probably ever, definitely worse than Wednesday or Thursday. The family I'm staying with kept asking if I was okay. I was in the least pain I've been in all month, I wasn't stressed. And as I mentioned before it felt hormonal, it's difficult to explain how I know. My tremors gets pretty prominent, but I get more stiffness if it's hormonal than if it's pain or stress induced, but I have more facial expression than from lack of meds. At least that's what my surgery brain is telling me, I could be completely wrong, there may not be any difference at all. I was also really light headed yesterday, after sending me for labs to make sure I wasn't bleeding, jerk-us declared it was probably hormones. It feels like puberty all over again, now that I think about it. And so here I am looking for knowledge or personal experience about navigating all this with PD. As usual just typing all this out was thearputic and helped me calm down (raging hormones and a vendetta against a surgeon isn't good for sleep)  


 

The slapstick stories about caregiving for my mother, who has dementia, from a hospital bed I'll save for another time 😊

 

Hope everyone had a beautiful Easter, I did. For the first time in years I spent it with my parents. The Church service was a beautiful testimony of the work Christ has done for members of our community. My friend who is doing  such an amazing job caring and advocating for me drove a hard bargain about my taking it easy for the rest of the day, to ensure I didn't overdo like yesterday. The deal was totally worth it, and gave me plenty of time to type out my rant.




 

He is risen



-Fiesty

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