| So Now What? |
| Shortly before my 6 month check up, I noticed that climbing the stairs was becoming more laborious. I would literally have to pull my way up the steps. Once, carrying an empty basket, I lost my balance and almost fell backwards down the steps.A couple of weeks later I was in the laundry room, lost my balance, and fell on the floor between the dryer and the dog's crate. Wedged in there, hands and arms up in the air, I felt like a dead bug! My toes were beginning to re-experience the all-too-familiar dystonia as well. I noticed my left arm was also becoming more rigid again--like that mannequin arm I first experienced. My surgeon reminded me not to wait until my scheduled appointment to come in as I needed a re-adjustment. He performed his magic with the computer, told me to get a hold of my neurologist and I left feeling a success again. But only a few weeks later, I was heading back down to Philadelphia again for the same problem. I had visited my neurologist, who's response was "What do you want me to do about it?" Here we go again. He wanted me to start back on my previous medications. I decided to wait to see if the surgeon could do anything before I started on them. He was stumped as to what changes to make, but was very patient with me. He explained that the dbs is for tremor only, but maybe he could help with more of the cramping. He worked with me for 4 hours. When we both felt as though the cramps were gone, I went home. Once again, within a matter of days, the cramps were back. So I tried the Comptan--which didn't seem to help. I've been back on the Requip again, which made me nauseous the first week. The second week, I am noticing that I beginning to loose sleep again. Tomorrow I go back down to Philadelphia again. Next week I go to my own neurologist. I've missed alot of work this year. Perhaps I should have taken more time off. My boss suggested that I try taking a few weeks off, to see if the stress from not working helps. She would like for me to seriously think about disability options.... |