Monday, November 12, 2007

Personal Medical Journal November & December 2007

November 12, 2007

It has been a long time since I have posted anything new, due to a variety of reasons. I had meant to add a final entry for the month of October, but it just never happened. Therefore, I will give a quick update on everything that has been happening over the last few weeks.

The greatest challenge over the last few weeks was completing the process of replacing the Mirapex for the Azilect. Once I was a little more than half-way through the process, I felt as if I suddenly hit a brick wall. I had no energy, and I spent much of my time either reading or napping. It was the most bone weary fatigue that I have ever experienced. I am pleased to say that it has gotten better.

I have been completely off of the Mirapex for almost two weeks, and I have been taking the Azilect for a little over one month. Thankfully, the obsessive-compulsive side affect of the Mirapex has disappeared, which was the main reason for discontinuing the Mirapex. The Azilect has actually improved the motor fluctuations that I had been experiencing. It does appear that the medication switch was a positive decision.

Last week I had to have an epidural injection in my cervical spine, which was a procedure that had been planned for quite some time. So far, it appears that this injection was a success. I have less neck and arm pain from the herniated C5-6 disc. It took about six days for me to fully "recover" from the procedure. The sedation that I was given during the procedure stayed with me for a little over twenty-four hours, which I thought was strange. I slept after the procedure and for the majority of the day following the procedure. There was some significant pain for the first four to five days following the procedure, but all of that pain disappeared by the sixth day. I am very hopeful that this injection keeps the pain under control for a while.

I saw my MDS on Tuesday, and it was a very eventful visit. She agreed that the sleep study was "inconclusive", but she was able to glean enough information to make some additional medication changes. We are increasing the Azilect from .5 mg to 1.0 mg. each morning. Additionally, based on my husband's description of the REM Behavior Sleep Disorder types of symptoms he has observed, she had prescribed Klonopin to be taken right before bed. I have now taken it for four nights, and I do believe that it is helping with the quality of my sleep. I know that my husband is getting better sleep, because I have not kicked or hit him during my dreams. This particular mediation is supposed to help suppress the symptoms of REM Behavior Sleep Disorder. Although it has only been four days, it does seem that it is having beneficial effects.

All of these recent changes appear to have been beneficial. The only negative aspect is that I am still quite fatigued during the day. The positive results far outweigh the one negative aspect. The fatigue could be a bi-product of the medications or just the disease itself.

I am going to end here for now. I am working on another post, and I do hope to have it complete by this week. I will continue to add information updates on my medical process on this post for the months of November and December. God Bless to all.

December 12, 2007

On December the 5th I saw my Movement Disorder Specialist. She was very pleased with the benefits that adding the Azilect has had on my symptoms. Additionally, I informed her that the Klonopin was helping me get better sleep at night. I am still experiencing extreme daytime fatigue. I often nap daily, but she said that is perfectly okay to do. I do still have breakthroughs of symptoms, but not as extreme as prior to starting the Azilect.

Before we ended the visit I asked her if she had a clearer picture or thought as to which form of Parkinsonism I have. She believes that I do have idiopathic Parkinson's Disease. Rather than the tremor dominant form, she feels that I have the more akinetic-rigid form. I was so happy to hear that she no longer thought that PD-Plus was a possibility. I almost began crying right there in her office.

Since it appears that the new medication regimen is working well, I am to start seeing her every three months again, rather than monthly. I still have bad days, which is to be expected with this disease. I am better able emotionally to deal with those bad days, now that I know exactly what I am dealing with. It is a blessing to finally have the answers I have been searching for.

December 21, 2007

As much as I enjoy the Christmas season, I can really feel the effects of the PD with the additional hustle and bustle of the season. There are so many things that I need to get done, but many times my body just will not allow me to keep up. This is difficult for me to accept at times, because I have always been such a go-go person.

It is so remarkable how the things I used to take for granted have changed. If I spend an hour or two shopping, I find myself done physically for the rest of the day. Naps are now an almost everyday event.

I spent yesterday baking, and by evening I was a wreck. My lower back hurt worse than prior to the fusion, and somehow the effects of my medications wore off worse than they have since making all of the adjustments. The bradykinesia left me hardly able to walk or speak just prior to bed. The pain from my back was so bad, that it brought me to tears. Yesterday was a good lesson for me in the sense that I must come to grips with the fact that I just no longer have the abilities to physically do what I once was able to.

Aside from the extreme fatigue, there are still some minor symptom breakthroughs. Again, these are most often brought on by trying to do more than I should. My goal for 2008 is to really start listening to my body, in order to prevent some of the effects that occur when I try to keep "pushing myself". I have been given the opportunity to have the time to take care of myself, since I am no longer able to work. Therefore, my new focus is to use this time to try new things in order to keep the PD under the best control as possible.


IndyMama said...

Hey! ((HUGS)) I just started a blog as well. Do you mind if I put your link on mine? I was notified of your blog by a friend. We need more people out there sharing their experiences ... it's so hard when you feel like you're the only one going through the symptoms and doctors tell you that you're crazy. Keep it up! God bless.

Patient With A Plan said...

Hi indymama.
Hugs to you also. It would be wonderful for you to add a link to your blog. In turn, I would like to add a link to your blog on mine. Your story is very unique, and I believe it can help many young onset PD patients.

Trust me, you are not alone in your struggles with the doctors. We cannot all be crazy. Blessings to you.