 |
 |
Hi--I feel like I'm on one of the talk radio shows saying "hi, I'm a first time caller". I have been reading and benefiting from the messsages for a month or so and am just now getting around to introducing myself. My name is Wendy and I am 42 years old. My mother was diagnosed about 8 years ago with Parkinsons at the age of 75. She has had other health problems including polio as a young woman, tachycardia and a heart arrest which required a getting a pacemaker. In fact, she now is on her 5th pacemaker due to various problems with the pacemakers. Grrr! Finally, she seems to have a good one! Her Parkinsons' has progressed quite far by this time and she now requires full time care. Our family has gone with her through many of the various living arrangements that are available following our father's death 5 years ago--living with family, living in an independent retirement residence, assisted living, and an adult family home. As of this June, I am enjoying a year's leave from my work to care for her full time at her home on the Pacific coast. It is about 3 hours from the University of Washington Medical Center where her doctors are, but we decided at this time being in a place that had good memories for her and is a restful place would outweigh the need to be close to doctors. I am so grateful for this time with her. Even though the days and nights are tough, being here has been very good for her--and good for me. Her physical situation is quite fragile now, though as you all know, there are times/hours when she does much better than other times. Her medications include sinemet 25/100, Sinemet CR, eldepryl and clozaril. Her most distressing symptoms currently are slowness of movement, limited mobility and extreme muscle tension which causes terrible bloating which is painful. I am just in the process of getting some respite care for a few hours each week so that I can take some time out for myself. I hope to get some long walks on the beach! This disease is awful--no doubt about it. It is painful to have and painful to watch with a loved one. Although her quality of life seems to have slipped away, she continues to be connected to people and life and people respond to her because of that. I'm glad I found this listserve because it really affirms what I've been learning about dealing with this disease. The recent discussion about nursing homes has been helpful because we may have to face that in the future---though I hope not. Anyway, thank you all for your exchange of ideas/suggestions/problems. Enjoy the Season! Wendy Holman [log in to unmask] CG for Eloise 83/8 Washington