After catching up another PALS blog, it put me of a mind to do what I learned in the recovery community, make a gratitude list. While I've had to endure losing practically everything I've worked for and who I am, I've got a lot to be grateful for. I've been abandoned by my husband, pigeon-holed in a nursing home, and virtually left for dead by family and "friends" but I still have much to thank my lucky stars for.
I live in the best facility in the state of Washington for people with ALS. While it's not exclusive to ALS sufferers, it is a place that has the best resources available for our unique and rare disease. My room has a built-in lift (EWC), fresh paint with low VOC, linoleum devoid of stains and rips, a large sunny window, original artwork, tech-saavy appliances, namely a flat screen television with a Blu-Ray Player that is operable by my Tobii speech generating device (SGD).
Yeah, I own my SGD! I'm extremely grateful to be able to communicate since losing my voice to ALS. Many PALS are denied this basic human necessity by ALS then by our government. I'm grateful I was able to pay extra to be able to use my SGD as a computer able to go online. I spend a lot of time blogging, going on Facebook and patientslikeme, and email.
My facility, a hospice house supported in part by Virginia Mason Hospital, is located in scenic and technology-rich Seattle. Although my traveling is curtailed by ALS, when I am able to get out, there are lots of places to go. I recommend the Seattle Public Library, the Seattle Aquarium, Woodland Park Zoo, Experience Music Project, MOHAI, Center for Wooden Boats, Bill & Melinda Gates Foundation, Sculpture Park, the Great Wheel (totally wheelchair accessible), Chihuly Garden, the Museum of Flight, the waterfront, the Pike Place Public Market, Starbucks...
When I'm "home", there are many volunteers who will read to you, visit, paint your nails, play piano, help with art projects, take you outside, meditate, or pray. We have activities available, outings, a myriad of therapies; including, art, music, massage, range of motion, and therapeutic harp. In-house haircuts are available for free. (I do wish waxing was an option.) But see? I'm lucky.
The care team is top notch. The doctors, nurses, nurse practitioner, patient care technicians, social workers, and therapy team is all high caliber. From management team to chef to maintenance to custodial, they are a dream team of healthcare professionals and I'm lucky to be here (even if I wish I could be home).
I'm also fortunate to have my husband back in my life. I've been critical of his lack of patience, empathy, and understanding but, honestly, he's been that way since I've known him, I just imbued him with traits he did not have. Who knew?! What I have is a runner. But, fortunately, he always comes back. Eventually. When he is here, he shares dinner with me, watches the news and movies, brushes and flosses my teeth, cleans my ears, and plucks stray hairs. He brings me Chocolates, flowers, and other sundry items. He visits often and stays long on Friday night. Sometimes I get kisses and hugs and special are the times when he looks into my eyes and really sees the "Tina" I used to be.
My daughter has really impressed me with her forgiveness, love, and acceptance. She rallied behind me, learned my disease and got involved. She visits often, more than members of my family who live less than 50 miles away. I'm fortunate to have a daughter who makes such an effort to spend time with me. She spends all night with me, cooks for me, and takes care of small tasks for me. I appreciate her so much!
I'm also grateful to still have friends who will visit. Most are friends made in recovery. Some still bring me meetings! A few, actually acted as caregivers for a time. A bunch will stay in contact via Facebook, giving me messages of encouragement and love. Some friends visit whom I once rode motorcycles with. One sells me Mary Kay and sends me gifts and candies.
I live in the best facility in the state of Washington for people with ALS. While it's not exclusive to ALS sufferers, it is a place that has the best resources available for our unique and rare disease. My room has a built-in lift (EWC), fresh paint with low VOC, linoleum devoid of stains and rips, a large sunny window, original artwork, tech-saavy appliances, namely a flat screen television with a Blu-Ray Player that is operable by my Tobii speech generating device (SGD).
Yeah, I own my SGD! I'm extremely grateful to be able to communicate since losing my voice to ALS. Many PALS are denied this basic human necessity by ALS then by our government. I'm grateful I was able to pay extra to be able to use my SGD as a computer able to go online. I spend a lot of time blogging, going on Facebook and patientslikeme, and email.
My facility, a hospice house supported in part by Virginia Mason Hospital, is located in scenic and technology-rich Seattle. Although my traveling is curtailed by ALS, when I am able to get out, there are lots of places to go. I recommend the Seattle Public Library, the Seattle Aquarium, Woodland Park Zoo, Experience Music Project, MOHAI, Center for Wooden Boats, Bill & Melinda Gates Foundation, Sculpture Park, the Great Wheel (totally wheelchair accessible), Chihuly Garden, the Museum of Flight, the waterfront, the Pike Place Public Market, Starbucks...
When I'm "home", there are many volunteers who will read to you, visit, paint your nails, play piano, help with art projects, take you outside, meditate, or pray. We have activities available, outings, a myriad of therapies; including, art, music, massage, range of motion, and therapeutic harp. In-house haircuts are available for free. (I do wish waxing was an option.) But see? I'm lucky.
The care team is top notch. The doctors, nurses, nurse practitioner, patient care technicians, social workers, and therapy team is all high caliber. From management team to chef to maintenance to custodial, they are a dream team of healthcare professionals and I'm lucky to be here (even if I wish I could be home).
I'm also fortunate to have my husband back in my life. I've been critical of his lack of patience, empathy, and understanding but, honestly, he's been that way since I've known him, I just imbued him with traits he did not have. Who knew?! What I have is a runner. But, fortunately, he always comes back. Eventually. When he is here, he shares dinner with me, watches the news and movies, brushes and flosses my teeth, cleans my ears, and plucks stray hairs. He brings me Chocolates, flowers, and other sundry items. He visits often and stays long on Friday night. Sometimes I get kisses and hugs and special are the times when he looks into my eyes and really sees the "Tina" I used to be.
My daughter has really impressed me with her forgiveness, love, and acceptance. She rallied behind me, learned my disease and got involved. She visits often, more than members of my family who live less than 50 miles away. I'm fortunate to have a daughter who makes such an effort to spend time with me. She spends all night with me, cooks for me, and takes care of small tasks for me. I appreciate her so much!
I'm also grateful to still have friends who will visit. Most are friends made in recovery. Some still bring me meetings! A few, actually acted as caregivers for a time. A bunch will stay in contact via Facebook, giving me messages of encouragement and love. Some friends visit whom I once rode motorcycles with. One sells me Mary Kay and sends me gifts and candies.
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