| 18 Months Later |
| So, how am doing?? I view my surgery as still quite successfully. The tremors are still kept hidden away from the world to see. That in itself is wonderful!! I have done several TV interviews and spoken to many groups on the topic of DBS/STN. The operation has also helped with that nasty depression that tends to be invisible to all, yet eats away at your insides. I continue to look forward to sleeping through the night (most of the time). Unfortunately, it is NOT a cure. I still have pd. And those who are familiar with neurodegenerative diseases know all too well that life does not stay the same. It changes day-to-day, minute-by-minute. My walking has become a painful experience. I wonder if this is an affect of the botox injections which I have been receiving. I cancelled my last injection due to the fact that it was not helping the dystonia at all. Dystonia Dystonia is a painful muscle spasm. It can happen in any part of the body. For me, it attacked my left foot, and is now working into my left arm as well. Dystonia is like having a "charlie horse" that never goes away. From my reasearch, young onset pd 'ers are more susceptible to dystonia and dyskinesias. Dyskinesia Dyskinesia is an involuntary movement of the muscles. It can affect any muscle, including the tongue. This means the those suffering from this frequently bite their tongues or cheeks. My neurologist was quite surprised when I told him that I thought that the dyskinesia was a painful experience as well. What makes it so painful is trying to control muscles that are out of control!! Fatigue Needless to say, I am often exhausted just trying to get through the day. Although I currently am taking a medical sabbatical from working full-time, I have been trying to keep busy updating and weeding out all the "stuff" that a person accumulates in a lifetime. I feel that I must try to stay active. Usually by 11:00 am though, I am done for the day. Driving Driving is something I try to avoid, if possible. I tend to limit myself to short excursions, such as taking my kids to school. I just don't trust my slow reaction times and inabilty to move well enough. Relationships I find myself almost distancing from others. I don't like to dwell on the fact that basically, I feel rotten most of the time. I have virtually no patience for "trivial" problems. Sexual intimacy is not one of my prioritities, as I am afraid to allow my husband to see me in such poor physical shape. In addition, I am afraid that sex will triger a muscle spasm. Much has been written on the subject of male dysfunction in pd, but not about problems for women. Anxiety When in a store or mall, I become anxious. I feel as though people crowding me, and all the merchandise is more than I can stand! Shopping is not a pleasurable experience for me at all. There are not too many women who can say that.... Disability I am very thankful that my Social Security claim for disability was approved without problems or questions. There is no way I can see myself trying to work, with the pd progressing. I am going to apply for disability retirement. Of course, the doctor must complete his diagnosis for detetermination. After seeing in black and white, that I am in the "end stage" of pd, it was a bit unnerving to say the least. Attitude is Everything I have not been pronounced dead yet. And I shall continue to keep my spirits high. I am determined to "Accommodate Without Surrender". I am much too young,, and havve others who still depend on me. I cannot let pd control my life. It has altered it a great deal, but I still celebrate life. |