| At 2 Years |
| Happy 2 year anniversary!!! My pd continues to show signs of progression, despite the DBS. So many people view the surgery as unsuccessful. But not I. I have had the opportunity to mistakenly turned off--I saw life without the effects of the operation. It was not a pretty sight for me or others to witness. Would I undergo this again? You betcha I would, without hesitation. You may be wondering how I know the disease is progressing. What are my symptoms? The biggest challenge I continue to face is the painful dystonia in my left side. My toes get sore, and when I walk, I am actually walking on my toenails, my toes curl under so bad. My movement disorder specialist said that my "unusual" walk that has concerned my neuro and surgeon is due to the spasms in my entire leg. There is no flexion in my knees or hips--so I walk like the bride of Frankenstein (laughing). I awake in the morning with a claw-like hand, due to the spasms in my arm. I have found that my massage therapy has improved this. Research also backs up the fact the accupressure can reduce many pd symptoms, therefore improving quality of life. I notice that pd symptoms are much worse in the heat, due to exhaustion. When I am tired, my balance is compromised, freezing episodes occur with greater frequency, my speech slurs and becomes almost inaudible. Sweating is another symptom -- one that is embarrassing. My autonomous nervous system cannot take the heat. My sleep patterns are frequently disrupted due to my waking during the night drenched in sweat. Yuck!!! I am now "officially" retired, as of June 7th. The retirement banquet was a grand affair. I didn't even cry-although my voice was quivering.To quote Shakespeare--"Parting is such sweet sorrow". The evening was bitterseet to say the least. Depression is still a battle I fight daily, but not to the extreme as it once was. My Effexor was doubled, due to problems at home. Pd takes such a toll on relationships. I don't know what I would do without the help of my 12 yr old son. He is very helpful. So, overall, I think I'm doing ok. I recently became the state representative for the Young Onset Parkinson's Association (YOPA). Something new to keep busy and productive in life. Anyone interested in joing should go to: http://www.yopa.org |