BIG Program Complete. Neuro Visit Last Week. Meds Working Fairly Well

In reverse order from the title, the problems I had with medications, specifically Sinemet or CarboLevadopa have been more or less resolved with a visit to my Neurologist in which she changed me back to a previous form having a little more of the Carbo part, which prevents nausea.For convenience sake she had prescribed a 250mg tab Levadopa with just 25 in the Carbo part. I had been taking 100/25. 2 1/2 tabs 3 x a day, So I was getting a lot of Levodopa with not enough to prevent nausea once we changed to the single tab format. It was worse than morning sickness. Happily, back on the 100/25 format and taking more pills may be less convenient but I have very mild nausea. In both cases it's the profoundly stupid/sleepy/gorked feeling after about an hour that really slows down my activity. It often means at least a crash on the couch for about 30 minutes or even an hour or more nap. I just take that in stride and go on with life once it wears off. At least I'm not having the leg cramping and mounting problems with the dystonia I had before the Sinemet.

Part two, the Neurology visit: All in all, I am serene. I know what we are dealing with, that it is progressive, but that I can do a lot to help slow and possibly prevent some of my worst fears. I don't have to take this lying down, which was what had happened as I worked intuitively with the dystonia. Based on what might have worked when I thought of inflammation in the world of Nursing where I had worked, I thought, immobilize and use anti-inflammatories. It just got worse and worse. So I wound up literally on the couch for a month. Having communicated with my wonderful Neurologist, and following her instructions to go to the BIG program, I faithfully attended 2 hours daily 4 days a week for 4 weeks. My pain level on a 1:10 scale on the right side was about a 9 or even 10 at times when I entered the program. It has been as high as 6 in the last week, but not all day every day, and as I stretch, use weights and go through the exercises I feel stronger, am visibly more upright, and have a hope that I did not have before. Yes, I have some dystonia on both right and left ankles and right foot. I probably will need to work with that every day for all my life. But I don't have to accept severe pain and immobility. I can mitigate the problem with working daily on it. Is that so bad?

Three, the LSVT BIG program is working for me, giving me strength in small increments and changing my ability to move more effectively. I hope to be able to walk around the block for the joy of it after a little more work. The program I attened incorporated both Physical and Occupational Therapy specific to my needs along with the basic BIG program. I went in a skeptic and came out a convert. My plans are to start with my BIG movements every morning and then go to the gym to work on core training and weights, using the bike to help get some cardiovascular workout. My therapist cautioned me to rest before I get tired. I have big thoughts. Now I will try to use my brain to tell myself, Self, you don't have anything better to do. Take a rest for 5 or 10 minutes on a bench and then go on to the next thing in the exercise circuit. If it takes 3 hours, they will be well spent if in a year I am working more efficiently and my fatigue diminishes as a result, making it a 2 1/2 hour effort.

Four, not in the title, Service. My religion promotes service as part of becoming who our Maker would have us be. I have long believed that, and tried to practice it. For a while I felt derailed by Parkinson's and did not find time to do even little things. Now a phone call or short visit is not a problem. Much can be done to help another through a phone call or email.

My Neurologist smiled and said it looked like I had worked through some of the stages commonly associated with the grief and grieving continuum taught by Elizabeth Kubler-Ross. She thought I had reached a healthy stage of acceptance. I had to suppress a guffaw. It came out as a giggle, because what I wanted to scream at the top of my lungs was, I AM GOING TO FIGHT THIS IMPOSTER UNTIL I WIN! It is peaceful here overlooking the battle ground of the last 4 years. Unused bottles of pills that sent me to sleep almost all day or kept me up almost all night are empty, their contents sent to some company that destroys them. A walking boot that cost my insurance company an unnecessary amount of money is in a plastic bag in the garage. Supplements I can't swallow because they are so big are sitting in my cabinet gathering dust as I look skeptically at them wondering what advantage they have over plain, homegrown or organic foods and whether they might be better put on the Snake Oil shelf. Our foods are not vitamin-less and empty. We just need to eat well.

So the plan is: Attend the BIG refresher class once a month while going to the gym 4 days a week if not 5. Eat well, follow the CURVES diet to reduce BMI, relax, enjoy the roses, and support others who need my help when possible. Gone is any anger not directed at fighting Parkinson's condion.