Dopamine-Responsive Dystonia

This is my new diagnoses. Since I never go see the Parkinson’s specialists a new diagnoses is not surprising after seventeen years. I don’t have Parkinson’s diseases, but my symptoms mirror the condition. The doctor who diagnosed me said I didn’t need to keep coming back after several years of seeing him, as long as my progress stayed the same. Changing states and having many different jobs and health insurances I had to make sure my medication was always filled. I have a copy of my medical records and always have it for my primary care physician. Since they have no expertise in the subject they always read the records and fill my prescription.

I researched this new diagnoses it and it is genetic. This explains how my mother has the same condition. It also starts in childhood which is exactly what happened to me.

I asked the doctor a lot of questions.  He was patient and answered all of them. My children have a fifty percent chance of getting this condition. It is easy stabilized by medication. So I don’t feel that bad about my desire to have children.  Muscular dystrophy was a disease that pledged my father’s family.  I had two uncles and two male cousins that died of the disease.  I never knew my uncles and I was considerable younger than my cousin. I do remember having a relationship with my cousins. It is hard choice to have a child that is not perfect. A choice I will have to make. There is a possibility that a child of mine will have problems. I will cross that bridge when I get there. It will not be an easy choice.

My reason for the doctor’s appointment was about my medication. I had questions and needed answers.

Q)  Will this medication have long term effects?  25/100 Carbidopa/Levodopa

A)   It should have no long term affects. Usually people with Parkinson’s disease have involuntary movement with high dosages of Carbidopa/Levodopa over time. It is believed this has to do with the disease. I have not seen my symptoms return as long as I take the medication. I have forgotten to take it by mid day I feel the symptoms start coming back.

Q)  Will this drug give my child birth defects?

A)   There have been no studies to confirm there is defiantly a level of risk. In his opinion the low dosage he believes there would not be a problem but he is going to do further research and consult another neurologist and get back to me in a week.

Not the answer I wanted to hear. It is actually the same answer I have gotten for years. Enter at your own risk. I did appreciate him taking the extra effort and doing research. I have found a few cases online of women who had healthy babies with Parkinson’s diseases taking higher dosages of the medication. I have a feeling I am never going to get a firm yes or no.

I am looking forward to more information. The truth of the matter is there is not a whole lot of information and everything is a shot in the dark. I am going to do what I have done over the past 17 years. Stay positive.

Here are links to what I found in my research

Dopa Responsive Dystonia Central

Parents and Cargivers

 

 

 

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Reproductive Seminar

A friend of mine wanted to go to a Seminar at a local reproductive clinic.  We were the first ones there. As we sat there waiting for it to start couples seem to pile into the room.  I whispered to my friend they are going to think we are lesbians. She looked at me like I was crazy.  Clearly the seminar was not focused on single mothers by choice. It was geared to couples with fertility issues.

The statistics were very depressing. It really made my thinking about this at 36 look bleak.  It took later bringing this to my single mother by choice group to make me feel better. I have no reason to think I have fertility issues.  None of these statistics could apply to me. Also to even think you have fertility problems a couple would have to try for a year to have a child. I haven’t done the baby dance in so long it is hard to even think about.  Not that I haven’t had the opportunity. I was tired of sleeping with men I had no future with. Even when performing the act to have a child I was always protected so pregnancy wouldn’t happen. Plus I am beyond per node about diseases.

Now with my desire to have children, I look back and realize I had an abundance of chances to get pregnant. I never thought I would be at the point of wanting to do it by myself. Especially with growing having a father that wasn’t that involved in my life. That was the last thing I wanted was to be a single mom.

It is funny how things change with time. Now I am sitting in this seminar with couples that want a child as I do. Being an accountant I am all about dollars and cents. I bombarded the doctor with questions concerning the cost of this process. The doctor was more into telling us the benefits of using their clinic. He mentioned how much the air conditioner cost during the tour. I felt it was a sales pitch. There are three different practices in the area that I know of. I am sure they all want the business of the infertile. That is there bread and butter.

My point was I am a middle class woman without the second income of a partner. Struggling in a bad economy to pay the bills and stay sane. Reading all the blogs and talking to a woman who did home insemination.  I start thinking should I try to do it at home. It would make the expense greatly decrease. Then the realization, that I am not that kind of woman. The do it yourself kinds. Hats off to them but I know that is not me. I am the pay someone to do it and spare myself the drama. Well with research there are clinics that are not fertility clinics that will do an IUI for less the cost.  When I am ready to make that move that is where I will start. The doctor actually gave me a referral to the The Feminist Woman’s Health Center. I read their webpage and they cater to Lesbian and Single Moms. It sounds perfect for my possible single mom status.

I am still in the thinking stage and have to plan if I am really going to do this. My friend made an appointment to have her first consultation. She is turning 39 and time is of the essence.  Even though I know I could handle being a single mother if I had to. It still feels like a loss. A loss of the dream of the family I never had and wanted to give to my children. I have the loss of a man by my side in life and to share in the joy of our family.

I have to face the fact that even if I have a child by myself it does not mean I will not find that man. Or even if I found that man would he be all I imagined. There are no guarantees with anything. The icing on the cake was the doctor told my friend and I health insurance does not cover same sex couples. We looked at each other and broke out laughing.  I let him know I was not a lesbian.

 

Necessity or Splurge

Saving Money

Ok I was not born in the technology age.  If you know what Atari game system is, you know exactly what I am talking about. Other than using my computer and applications at work I am not into technology. I was looking into to buying a new cell phone.  The cell of my choice was a 4G and had a whole bunch of apps. I had to really think about this. I don’t even know how to use all the functions on my very basic cell phone. I also have had no interest in learning. I don’t even know what 4G is exactly. Why did this look appealing? It would be a new toy I barely use like my treadmill. I really need to face reality that I need to get my finances under control to work on my life as a single mother. I have always thought of my finances in the form of just me.  I really need to think of future expenses.  The initial getting pregnant expenses are not cheap, other than the traditional way.

Also taking care of a child on one income would be a whole new reality. I am starting to really get a picture of this way of life. This picture is so different than any other picture I have had in the past.