And I often feel like I’m full-term! For some reason I feel very large with this pregnancy, even though I’m about the same size as I was at 30 weeks during my last pregnancy. I think it’s because everything I do is requiring more energy and I feel like I’m always exerting myself. Compared with my previous pregnancies, I’m having a little more trouble getting up and out of chairs, walking for long distances, and going up and down stairs.
The baby is doing well. We learned at my last appointment that the blood clot in my placenta had completely disappeared, so we no longer have to worry about that. The baby is active and has fairly predictable patterns of activity. He is most active in the early mornings and late evenings. If I wake up in the middle of the night, he’s usually moving. Thankfully, I can sleep through most of it! He doesn’t seem to like it when I lay on my right side – he will kick against the bed until I turn over. When I’m on my left side, I’m usually against Jason, and so he’ll kick against Jason until I move away. Apparently, he doesn’t like things touching my stomach because he also kicks against things like Jason’s hand or my desk at work. It makes me happy that he is so active. There’s something very reassuring about feeling him move around.
I’m having issues with a few things right now. One, my legs…they ACHE almost every night. This is obviously a PD thing, not a pregnancy thing, but it’s really annoying. If I keep my legs moving, the pain is bearable, but constantly keeping my legs moving is annoying. Thankfully, the heating pad usually helps.
The second issue is also a PD issue: choking. Parkinson’s patients often have trouble swallowing, which can cause choking. I had several choking issues before getting pregnant (maybe 5-6 in total). But over the last few months, my choking has definitely increased. It’s a little frightening for me. Most of the time, I get choked, cough a couple of times and then I’m okay. Still, it’s a little unnerving when it happens, especially when I’m alone.
The third issue is a pregnancy issue…I think? I have been waking up during the night vomiting. Not waking up needing to vomit, but waking up because I’m already vomiting. It’s gross, and a little scary, especially in light of the choking issues I’ve been having! The vomiting doesn’t happen every night, but it’s happening several times a week. This happened a few times a couple of months ago and my doctor prescribed Protonix for acid reflux. I’ve been taking that for the last 3 months. So I don’t understand why it’s happening again now since I’m still taking the Protonix. It would seem like the Protnonix would help if this was caused by acid reflux. So it has me wondering if there is some other cause. Has anyone else had anything like this happen during pregnancy?
Overall, though, things are going well. Less than 10 weeks and then we meet our baby boy!
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Dyson DC-25 Ball All-Floors |
, so the price for the Dyson is pretty steep. I have to talk a little bit about coming off my medicine only because what I thought would be a somewhat simple process was anything but. In a previous post I talked a little bit about how I had to step up my dosage of Requip to reach the level that was right for me. To come off of Requip, I couldn’t just stop taking the medicine. I had to step down the dosage.
IT WAS AWFUL.
After the first week at a lower dosage, I started hurting. I was expecting my symptoms to come back. I wasn’t expecting to have withdrawals. It’s not like I was taking narcotics or pain meds.
The second week was even worse. I ached all over. My legs felt like they needed to be cut off. A friend who is a nurse told us that coming off of Parkinsons’s medication is often compared to the withdrawals a cocaine user goes through when he is trying to get clean. It’s really no wonder that once people start taking drugs, they keep taking them. I completely understood the need for relief from the pain.
Sitting on the couch or laying in bed wishing for relief from the pain, I often felt like if I could get relief from just taking another Requip, I would. Two things kept me going. The first is obviously that I really wanted to get pregnant and knew I had to be off the medicine to be able to do that. The second is that I knew that even if I went into the kitchen and took a Requip, the pain would not go away or let up. I would have to take it for several days for it to build back up in my system before I would get any relief.
Thankfully, it only took a few weeks to step down off of the Requip. I finished my other medications around the same time. That was at the beginning of April. It was now time to try to get pregnant!
There is currently no cure for Parkinson’s disease. Medications treat only the symptoms and come with some pretty nasty side effects, as I am quickly learning.
After being diagnosed with Parkinson’s, I began trying to discover what could have caused me to develop this disease at such a young age. There are many theories on what causes Parkinson’s. The disease itself develops when the dopamine producing cells in the brain begin to die off. But doctors do not know why these cells begin to die. The traditional thought around the subject is that there are environmental triggers that cause the disease. This is because certain professions where workers are exposed to toxic chemicals seem to have higher instances of the disease. However, newer research suggests that mutations of certain genes can either cause Parkinson’s or make a person more likely to develop Parkinson’s. The cause could also be a combination: the genes make you more susceptible, but then something in your environment triggers the actual loss of dopamine producing cells.
Since some families have multiple people with Parkinson’s, researchers have long looked for a hereditary tendency towards Parkinson’s. It has been hard to establish a completely genetic link to Parkinson’s, however, since families also share many environmental factors. No one in my family history has Parkinson’s disease. Both my parents are living - neither has Parkinson’s. Two of my four grandparents are living, neither has Parkinson’s. My deceased grandparents did not have Parkinson’s either. So how did I get it?
A mutation in a gene has been linked to higher rates of Parkinson’s. As part of a research study, I was tested for this gene mutation thought to cause Parkinson’s disease. I do not have this particular gene. But, this is a big area for research in Parkinson’s right now, and scientists are discovering more genes that could be linked to the disease.
I looked at environmental factors. Even thought we don’t know what causes Parkinson’s, one thing is clear. Certain areas of the United States (and the world) have higher rates of Parkinson’s. This is thought to be because of chemicals or pesticides used in those areas. I do not live in a rural farming area and I have never worked in a factory. I grew up in the suburbs and have worked in an office building for most of my adult life.
I have decided I will probably never know what caused my Parkinson’s disease. And even if I discovered how I got it, I can’t change the fact that it’s here.
The majority of people with Parkinson’s are over the age of 60. They obviously don’t deal with issues such as pregnancy. So there is not a lot of research out there that tells how Parkinson’s affects a pregnancy or how a pregnancy affects Parkinson’s. One small study that tracked 17 pregnant women with Parkinson’s showed that pregnancy was associated with a permanent worsening of symptoms in 10 of the women. All the babies were born healthy and there were no complications during the pregnancies themselves. So the risk to the baby was no greater than that of any normal pregnancy. That was good news.
The bad news: no medicine during pregnancy or breastfeeding or even while trying to conceive meant that I could be off my medicine for a couple of years. This was a pretty big deal since I was taking a medicine specifically to slow the progression of the disease. At the recommendation of my neurologist, I was also taking a couple of supplements that had been shown to slow the Parkinson’s progression. All of that would have to go. So I would be giving up my meds, and taking a risk that the pregnancy might permanently worsen my symptoms.
My husband was very scared about the worsening of my symptoms. Me? I wanted a baby bad enough that I was willing to risk a worsening of my symptoms. Of course, then that brought up a whole new round of questions I had to consider. Is it fair to have a baby and possibly not be able to give 100% physically to him? I struggled with this, and with whether I was being selfish or not. There were just so many unknowns and no way to know how my symptoms would progress or if they would progress at all. I always just kept coming back to the baby. I just wasn’t ready to give up that dream.
We knew that if we decided to try to have a baby that we didn’t want to take any drastic measures to get pregnant. With my first, getting pregnant took more than 2 years. I had my Fallopian tubes cleared twice and had surgery for Stage 4 endometriosis. I took Clomid for 7 months before conceiving. However, after she was born in November, I was pregnant again in February (even though I was exclusively breastfeeding). That pregnancy ended in a miscarriage. By July of the same year, I was pregnant with my son, even though I was still breastfeeding. But it had been 6 years since he was born, and since endometriosis can grow back, it was really hard to guess at how easily I might conceive or if I would even be able to get pregnant at all.
After consulting with both my neurologist and my OB, we decided I would come off my meds 1 month before we started trying to get pregnant. That would give the Parkinson’s meds time to leave my system. My plan was to (hopefully) conceive within 6 -9 months, be pregnant for 9 months, and have some time to breastfeed the baby. That would limit my time off meds to a little over 2 years, which I considered a reasonable amount of time off. I didn’t really feel like I had 2 years, or even a whole year, to try and conceive. I needed to be back on my medicine within 2 years or so and if it took a long time to get pregnant that would not be possible. So I was praying that I would get pregnant very quickly!
I go back and forth with my acceptance of Parkinson’s disease. When I was first diagnosed, there was a part of me that was just glad to finally have a reason for some of the symptoms. At first, I actually felt a little less weird…because now I had a reason why I sometimes peed on myself and why my hand wouldn’t stop shaking. I could stop thinking I had become clumsy because I would fall down or lose my balance at odd times. It wasn’t me, it was the Parkinson’s.
That feeling didn’t last long. After a few weeks on the medicine, I was frustrated. I was coming home from work and getting into bed almost immediately. I felt like it took all my energy just to get through my workday. Weekends weren’t much better. The only way to make it through a whole day was to take a nap after taking the Requip. I thought it would get better after a few months on the meds, and I did learn to adjust a little. Occassionally, my boss would let me work from home, and on those days, I could stay up and do supper and bedtime with the kids. So that helped sometimes. But I was still mad about the things that I felt Parkinson’s was taking away from me.
I just wanted to be normal! I wanted to have energy. I wanted to be like the other moms who went to work everyday and still were able to cook dinner when they came home and tuck their kids in at night. I wanted to be able to clean my house…yes, really. I like a clean house and I really don’t mind cleaning. But I hated seeing my husband do it all. It made me feel like a failure. We started planning things around me…if we were going to do something on Saturday that might wear me out, we wouldn’t do anything on Sunday. I hated it! I wanted to be able to go to the zoo or the water park with my family without being worn out for days afterwards or without us having to leave early because “Mommy’s too tired.” I wanted to feel better. I wanted to be healthy.
And I wanted to have a baby…
After my husband, Jason, and I got married in 2008, he made some comments about my tremors, balance issues, etc…and started trying to convince me that it wasn’t normal. He mentioned Parkinson’s a couple of times. He’d say things like “Easy there, Parkinson’s” or “Careful, Parkinson’s.” At first I thought he was joking, but one day after he had repeatedly mentioned it, I asked him about it. I’m not sure I’ll ever forget that day – we were in a Mexican restaurant eating chips and salsa, and my shaky hands were, as usual, causing me to drip salsa everywhere. Jason made one of his usual comments and I said something like “That’s not nice and you shouldn’t say that.” I must have been in a bad mood, because normally I would laugh it off. He instantly sobered up instead of telling me he was just playing…and that’s when I thought something was wrong. I remember asking him if he thought I might really have it and he said yes. Even though he had been pushing me for months to go to the doctor, I guess I always thought it was to just have a name for whatever caused the issues…not because he actually thought I could have something seriously wrong with me. I argued with him and said I was too young for Parkinson’s.
I got on the Internet immediately from my iPhone and started looking up Parkinson’s symptoms so that I could prove him wrong. Sadly, I only found more Parkinson’s characteristics that I possessed that I never knew were “symptoms.” I also found out that many PD like symptoms overlapped with multiple sclerosis symptoms…a disease, that while still relatively rare, was much more common in people my age. MS scared me. I remember telling Jason that if I had to have one or the other, I would rather it be Parkinson’s disease.
And so we began a little quest for a diagnosis….and got several! We went to the doctor in May 2009. He did some blood work and I got my first diagnosis…a nodule on my thyroid and hypothyroidism. I began taking Synthroid and saw an endocrinologist. He said I might have a mitral valve prolapse (in my heart) and sent me to another doctor for testing. That doctor confirmed the mitral valve prolapse diagnosis, and also diagnosed me with dysautonomia (I later found out dysautonomia and hypothyroidism are common among PD patients). In the meantime, I also had an ultrasound that determined the nodule on my thyroid was small enough to not be an issue right now. I was referred to a neurologist for the tremor.
The first neurologist I saw was a jerk and made me feel like I was stupid and was an overreacting hypochondriac. He told me I was too young to have anything wrong with me, but said he would send me for a MRI to “prove” that I was fine. The MRI revealed I had an arteriovenous malformation (AVM) in my brain. An AVM is an abnormal connection between an artery and veins. It’s usually present at birth and is typically not diagnosed until symptoms appear. The danger of an AVM is in its rupture, and that’s often when the first symptoms appear. The rupture causes a bleed in the brain that can cause seizures or a stroke and can lead to death.
I was referred to a neurosurgeon to get more information on the AVM. He would let me know if my AVM was in danger of a rupture and if I needed to have surgery to have it removed. At the first appointment, he gave me a thorough examination, much more thorough than the one given to me by the neurologist. It was there that I first heard the term “Parkinson’s” applied to me as he dictated into his recorder for my files “Female age 32 presents with early onset Parkinson’s and an AVM in the right occipital lobe.” Not good.
I had to have another, longer MRI to determine if the AVM was operable (it’s not). The AVM was very scary, but the neurosurgeon felt that it was stable. Increased blood volume during pregnancy can cause an AVM to burst. Since I had already safely made it through 2 pregnancies with no issues from my AVM, he felt we could just monitor it with an annual MRI to check for any changes. The AVM, like the hypothyroidism, could not explain any of my symptoms, so it was back to looking for causes.
We went to see a new neurologist in July of 2009. He was reluctant to diagnose Parkinson’s in someone so young, but stated that all of my symptoms pointed to PD. A symptom I had been unaware of was also pointed out – my right arm doesn’t swing when I walk. My husband had noticed it, but I had not...that’s one of those things that I had never paid attention to. My neurologist sent me for another test but nothing else was found. He wanted to try and treat me for essential tremor first. I tried two medications, but they didn’t work. The next step was to try the medication for Parkinson’s disease.
When I was in my early 20’s, I developed a tremor in my right hand. The tremor didn’t bother me, because it didn’t interfere with my daily activities. I had once been told when I was a teenager that I had borderline low blood sugar. Since sugary drinks aggravate and make blood sugar issues worse, I assumed that the shakiness in my hand was related to my blood sugar being low. I dismissed it. I’m not a hypochondriac, and I don’t like to go to the doctor, so I rarely would see a doctor unless something was really bothering me.
I also began having incontinence issues in my early 20’s. Since I had not had a baby yet, there was really no reason for me to be having issues like this. Besides, this was not an “I sometimes wet myself when I cough” type of issue. This was an “I’m too young for adults diapers, right?” type of issue. This was a big deal, so I saw an urologist. I had a cat scan and other tests done, and my bladder and the surrounding areas showed no damage or reason that I should be having incontinence issues. I took incontinence medications that provided no relief. I even had my bladder inflated to check for problems and size issues. My bladder is on the small side of normal, but the urologist said it wasn’t small enough to be causing issues. After taking medication for overactive bladder for a couple of years, with no results, I gave up looking for answers and just dealt with it as best I could.
When I was pregnant with my first child at age 24/25, I began falling, mostly when walking up or down stairs. It happened often enough that a friend at work started insisting I take the elevators. I thought it was just a pregnancy balance issue. But the issue continued after the baby was born and on into my second pregnancy. I learned to hold onto handrails and be more careful, especially when carrying the babies up and down the stairs.
I developed achiness in my arms, especially my right arm, which was blamed on carpel tunnel. I was tired a lot, but I had two young children, worked full time, was very active in my church, and was going to school online. Who wouldn’t be tired?
By the time I was 30, the tremor in my hand had become more prominent. Everyone around me noticed it. There were a few comments made by people around me about Parkinson’s disease, but it was always as a joke…and I never seriously considered that something might actually be wrong with me.
