Wednesday, September 12, 2007

Personal Medical Journal September & October 2007

September 12, 2007

During the last two weeks, I have had some new aspects of my condition come into my life. There have been a few occasions where my medications have appeared to fail to address my symptoms to the level they normally do, then stop working altogether until my next dose. Additionally, there have been a few occasions where the medication kicks in fine, but my symptoms then return to some degree, only to improve again. Finally, my blood pressure has been acting up more frequently. When I have felt myself getting dizzy, my blood pressure is normally below 90/60.

What concerns me about these changes is that all of these could be indicative that my diagnosis is leaning more toward a PD-Plus condition. Although most PD-Plus conditions do not respond or do not respond significantly to Sinemet, I have read that younger people appear to have response that is more favorable. (Multiple System Atrophy) Up to 28% of people with MSA respond well to Sinemet for the Parkinsonism symptoms, but only 13% retain any benefit from Sinemet. Although I have had several occasions of drops in blood pressure over the last ten years, it is hard to determine if the increase in incidents is due to the condition or the Mirapex that I take.

There are only a couple of possible scenarios.

The first scenario is that I am experiencing the motor fluctuations that can occur in young onset Parkinson’s Disease patients, who are taking levodopa. (Sinemet) I have read that young onset PD patients can begin to experience dyskinesias and motor fluctuation within the first year of treatment. With respect to the blood pressure issue, it is either totally unrelated to the condition, or it is part of the Parkinson’s Disease, but is more advanced than what would be expected. Autonomic dysfunction is definitely part of Parkinson’s Disease, but those types of issues do not normally develop until late in the course of the disease.

Unfortunately, the other scenario is that I am actually dealing with a PD-Plus condition, and the PD drugs that are normally prescribed for the Parkinsonism symptoms, are beginning to lose their effectiveness. Likewise, the increase in low blood pressure incidents is easily attributed to a PD-Plus condition. If this is the case, I can only wonder how long it will take before the meds no longer have any beneficial effect on my symptoms, and how that situation would affect the progression of symptoms.

I know how slow and unstable my walking is, as well as how bad my speech is, when my symptoms return at night before my Sinemet CR kicks in, or when I have the problems described above. I also know how hard it is during these brief periods to deal with the return of symptoms. With this in mind, I try not to think about how hard it would be not having any improvement in the movement and speech symptoms.

Obviously, scenario number one is the most appealing scenario. Only time, and monitoring the progression of this condition, will shed some light on which condition I may actually be dealing with. Until then, I will continue to play in my garden, as much as I can, since it provides me with peace and much needed exercise. I will also continue writing this blog and hope that others may find something that is helpful for their situation. Most importantly, I will put all of this is God’s hands, knowing that He is much more capable of dealing with this than I am; and believing that whatever the outcome is, it will be no more than I can handle.

September 19, 2007

I am still having symptom breakthroughs. There does not appear to be any real pattern. One minute by symptoms have adequate coverage, and the next minute I am experience speech and walking issues. Then the symptoms will be covered again within 10-20 minutes. Also, I am still having times when the medication seems only partially effective. Again, there is no real pattern. It is a little embarrassing when it happens out in public. It happened a few weeks ago at the grocery store. My husband and I were getting ready to check out, and I became "slow". Rather than stay in the store, worrying if anyone would notice, I "slowly" made my way out to the truck, leaving my husband to check out. Since I was only fifteen minutes away from my next medication dose, I just went ahead and took it.

Sleeping is becoming a real issue again. I had been taking a sleeping pill a few months ago, but discontinued it once I started taking the Sinemet CR at night. There is definitely a difference in the quality of sleep, but I am still waking up multiple times some nights and still having difficulty falling asleep. I really do not like the idea of adding another medication, but I have read that inadequate sleep can have and affect on the symptoms. I may ask the specialist, when I see her in two weeks, if she can prescribe a sleeping medication that I can use a couple nights a week as needed.

My balance seems to be getting a little worse. There are times when I will begin to fall backward, and I have been lucky so far that I have not yet hit the ground. I think that this is due to the fact that when I have started to lose balance, it has most often been while standing up from a sitting position. If I am sitting on the edge of the bed and then stand up, the bed is there to catch me, so to speak. I was in the bathroom one night, and I began to fall backward. If their had not been a wall behind me, I really believe that I would have ended up on the floor. Additionally, I notice the balance problems when taking a shower. I do not seem to have any issues with falling forward.

So, all of these new changes will be addressed with the MDS in two weeks. I plan on not taking my medication that morning, so that she can see what I am like without the Sinemet. I do not look forward to that, but I think it is important for her to see. I was on the Sinemet during my initial visit, so she saw the symptoms to a lesser degree. The Mirapex does not seem to play too big of a roll in covering the symptoms. It only seems to have extended the length of time each Sinemet dose is effective.

I attended a PD support group yesterday, and it was very informative. There was a physical therapist as a guest speaker, and she showed the group some exercises that can help with muscle strengthening and balance. I plan to start doing these exercises, most of which can be done while sitting, to see if I can benefit from them. Additionally, there was another speaker who said she would call me with information on a support group near my home. The support group I went to yesterday was about an hour away from my home. It is worth the drive, so I will probably still attend that group, but additionally joining a more local group would benefit me in the event that the hour drive becomes too much. It would also give me the opportunity to meet people in my area who have PD or Parkinsonism.

Each day is a challenge, but it is also a blessing. The challenges serve as a vehicle to become stronger and to remind us to appreciate more fully when we have those happy moments. Seeing others who are in worse condition that I am, reminds me to appreciate the things that I still can do, instead of being upset about the things I no longer can. Since Parkinsonism became part of my every day life, it seems that I learn something new each day. I have learned to accept my condition and how it relateds to my life today, and I refuse to dwell on what may happen tomorrow. I will deal with tomorrow when it gets here.

October 8, 2007

I saw my MDS a few days ago for my three month follow-up. I went to the appointment without taking Sinemet, because I wanted her to see me with my symptoms in full force. During my previous appointment I was fully medicated. I absolutely hate allowing my symptoms to surface to the maximum level, but I thought it was important to do so for this appointment.

So, I was extremely slow, and my speech was terrible. She did a shortened version of a neuro exam, which my husband says I failed miserably. As soon as she finished her exam, I immediately took a Sinemet.

Having to deal with the symptoms really wears me out, so I was not able to discuss everything that I wanted to. We did agree to discontinue the Mirapex, because it was turning my mild Obsessive Compulsive Disorder, which is normally under control, into major OCD that was becoming out of control. We are replacing the Mirapex with Azilect, which is another class of drug. It will hopefully to what the Mirapex was doing, except without the OCD increase.

I told her about the medication issues I have been experiencing, as well as the increase in orthostatic hypotension. Again, it was so difficult to communicate, that I really did not ask the questions that I wanted to. I have a follow-up appointment in a month, rather than the usual three month follow-up, to see how I am handling the Azilect. I will definitely take that opportunity to discuss everything then.

My foremost question that I want to ask is if she is leaning in any particular direction with respect to the type of Parkinsonism I have. I know it may take some time before she can be definite, but I am curious of what her initial thoughts are. I guess I will just have to cool my heals and wait until next month. Until then, I plan to rigorously document the medication failures and blood pressure issues, so that I can address those more thoroughly. I feel like I am closer than ever to a diagnosis, and patience is not my strongest suit; everything happens in its own time.

October 17, 2007

I am in the middle of tapering off of the Mirapex, and I can feel a difference. The "off-times" seem to be more pronounced and increasing in frequency. I began taking the Azilect today. I did not appear to have any immediate adverse reactions, so that is a positive sign. Hopefully, once the Mirapex is completely out of my system, the Azilect will prove to be an equal or better replacement. It would be miraculous if it stopped the end of dose "wearing off" and "on-off" fluctuations altogether.

I went for a sleep study on the 9th, which was intended to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. Sleep disorders are common in Parkinson's Disease and Parkinson-Plus Disorders. Unfortunately, it is my opinion that the wrong type of study was done. I am not a doctor, so I plan to confirm this with my MDS in two weeks.

There are two main types of Polysomnograms that can be done, according to the information I found on the internet. One is specifically used to determine if sleep apnea is present. Basically, a patient is wired up with sensors and goes to sleep. After about 90 minutes, the patients is told to change sleeping positions. (Example: switch from sleeping on the back to sleeping on the side) After an additional 90 minutes the patient is awakened and fitted with a mask that is connected to a C-Pap machine. The patient goes back to sleep and is monitored while using the C-Pap machine. The second test is geared more toward ruling out REM Behavior Sleep Disorder and as part of the testing for Narcolepsy. The patient is still wired to various sensors, but is never awakened throughout the night or hooked up to a C-Pap machine.

I was given the first test. The problem with this is that I never entered into REM sleep during the test, due to frequent nocturnal arousals, as well as being wakened every 90 minutes. Therefore, having never entered into REM Sleep, it is my understanding, that it is impossible to determine if I do have REM Behavior Sleep Disorder. Additionally, because the second test that is used in conjunction with a Polysomnogram for ruling out Narcolepsy was never done, it is impossible to determine whether or not I have Narcolepsy.

The only information that was gained by the test that was performed, is that I have multiple episodes of "hypopnea" while I sleep. In general terms this means that I have episodes of shallow breathing of less than 50% of normal, that cause arousals during sleep. Unlike true apnea, I do not stop breathing altogether. It also confirmed that I have multiple nocturnal arousals of unspecified origin that occur. These unspecified arousals continued even while attached to the C-Pap machine. Additionally, my sleep onset latency time indicated excessive sleepiness, and I only achieve 61% sleep efficiency. Normal sleep efficiency is 85%.

Again, I am not a doctor, but after researching my results on the internet, they raised more questions than there were prior to the sleep study. For example, apnea-hypopnea episodes are common in Multiple System Atrophy. These episodes can be decreased with anti-Parkinson medications, which I do take at night. This raises the question of whether or not the episodes would have been more numerous or severe had I not taken my medications the night of the sleep study. Frequent nocturnal arousals are common in both Parkinson's Disease and Parkinson-Plus Disorders. One of my original complaints was excessive daytime sleepiness, which the sleep onset latency time and the sleep efficiency percentage both support. Unfortunately, there is now no determination on the REM Behavior Sleep Disorder or Narcolepsy, but also no real explanation on what these results mean in terms of my condition. I fully intend to bring these issues up with my MDS for her interpretation. If I am correct in the opinion I have made based on my research, a second sleep study will need to be done.

It angered me quite a bit, because I had raised the question about the type of study being done, a week prior to the appointment. I was told that this is the standard test. I now believe that I was misinformed.

October 23, 2007

I have added the Azilect and will be completely off of the Mirapex in 6 days. I can really see a difference now with respect to both.

Since starting the Azilect I have not had any symptom breakthroughs (on-off). Although I still have end of dose wearing off, it occurs less often and with much less intensity. The symptoms return very slowly and to a much lesser degree. The only downside that I have noticed is that I am more tired during the day, and my energy level seems to have decreased quite a bit.

Now that I am down to a very small amount of Mirapex, I have noticed that my obsessive-compulsive behaviors are back to normal. Since I do have mild obsessive-compulsive disorder, I have always had minor obsessive-compulsive behaviors associated with the condition. While on the Mirapex, those behaviors increased significantly. I now feel that those behaviors are back to where they were prior to starting Mirapex. The best way to describe the difference is:

My "normal" mild obsessive-compulsive disorder does not interfere with my daily life. Although annoying at times, usually I am able to re-focus the behaviors on tasks that I need to accomplish, which actually helps me be more efficient and somewhat of a perfectionist. However, while taking the Mirapex, not only did the behaviors intensify, but I was no longer able to focus on anything that needed to get done. I was only able to focus, to the extreme, on the tasks I wanted to do. I had no ability to focus on the tasks that I needed to do. I would push myself to extremes physically, because I was so obsessed with whatever I was doing at the time.

So far, it appears that the medication switch was a good decision. I am more than willing to be more tired during the day, rather than have extreme obsessive-compulsive behaviors. At least when I am tired, I can take a nap. I am hopeful that the Azilect will continue to help the Sinemet with controlling my symptoms. Of course, there are those symptoms that appear to not be helped as much as others, such as speech and balance. Therefore, I make extra efforts to speak clearly and with greater volume, and I try to be more aware of my surroundings due to my balance. Regardless of medications, each day is different from the next. I just take each day as it comes, and I do my best to avoid situations that make the symptoms worse.

I will add one last entry for the month of October as soon as I am completely off of the Mirapex.


jeannie said...

You are one of the bravest women I have ever read about. Most people would have given up and just accept things as they are. Not you. You are very fortunate that you have someone in your life to provide support in every sense of the word. I mostly am talking about your relationship with God. People come and go in our lives, but God will never forsake us. You are truely blessed.

You must remain steady and undaunting. Your journey that God has set upon you will test your faith in Him and those around you. Do not faulter from this path, for in the end, God and heaven are all we can count on.

Be true to Him and everything will come to you that He has planned. Others may seem to be with him, but in the end, you may see them for who and what they are/are not.

Take courage and Blessed be your faith.

Patient With A Plan said...


Thank you so much. Your words touched my heart deeply. I agree that people do come and go, but that God is with us from the beginning and throughout our earthly lives, until He calls us home to be with Him. He has chosen to bless me with loving and supportive people in my life, for which I am thankful.

I have experienced His presence throughout my life. He speaks to us through our hearts and will always guide us. If we choose to listen when He speaks and are faithful, we will always be provided for. He gives us the strength to persevere through any trial. Without Him as my strength, I would not have had the ability on my own to achieve the levels of acceptance, contentment, and fulfillment with respect to all aspects of my life today.

Each day of my life is filled with many blessings, and your message is one such blessing. May God Bless you for being an uplifting voice of encouragement in my life today. Thank you.