Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Saturday, August 23, 2008
Update: Hoyer Confusion, Gracie Mansion, Phys. Therapy Rocks!
Before I forget to mention it, I won a competition in one of my online writing groups, where points are turned in for gift cards [I won 1,000 points] Here is the link to read my entries for a "Healthy Living Journal".
So my physical therapist, Michelle, came from Gentiva Home Care. Herein lies the great Hoyer Lift paradox. Together with her supervisor, TJ, they got the Hoyer out of my basement storage. Now, I should point out that this thing is h-u-u-g-e! I have been resistant to having it in my apartment because of its size, and the aides have been resistant to it because I can still stand and transfer. But, there have been moments, especially when I was trying out the lithium, that I am just too weak to stand and pivot.
So we got out the Hoyer, and the two ladies struggled with it, and suddenly TJ says "this is just not safe to do with one person. You won't be able to use it." I emailed my friends at the ALS clinic, because they were the ones who told me to book PT to train on the Hoyer. Antoinette went through the roof, phone calls ensued, and the result was a second visit with another PT. No problem this time : he made it look easy with one person. But I thank God I don't have to use it yet. PT is wonderful, and very beneficial. Michelle stretches me out and I have been doing so well with transferring and standing. I intend to pay her privately once a week, when Medicare/Medicaid stops paying her, which will be probably in a couple of weeks. At $85 a pop, I will have to prostitute myself with any way I can make money on the web! I found sites where I can earn Amazon gift certificates, which are really good. And I am still doing everything I can, to avoid spending money! Needless to say, there hasn't been a whole lot of fun or enjoyment, but that's the way it has to be for now. I look forward to my weekly Starbucks outing. My summer culminates tomorrow with the annual Ride for Life party at the Pendergasts. And on Tuesday my friend Stacy is coming down from Dutchess County. She is leaving her two toddlers in the care of a sitter and driving two hours each way. It doesn't get much more dedicated than that! Wait until she hears that I need her to hang the picture she sent to me at Christmastime. How embarrassing! But I just can't do some things myself!
My wishlist : to have the apt painted, have pictures hung, and of course to get into Manhattan and be able to leisurely roll around. And of course the beach -- this is the second summer I will not have seen the ocean. Special wheelchair-friendly mats have made the beaches accessible, and of course boardwalks are great. I am still looking for a group that does outings for disabled people. I am accepting that I will never again see an ocean, feel the sand, roll on a boardwalk, or smell the salt air. For someone like me, who has always lived for the beach, and never lived far from it, this makes me sad.
Through the DNNYC [Disabled Network of NYC], I managed to get an invite to the annual barbecue at Gracie Mansion, commemmorating the ADA [Americans With Disabilities Act] I met Jody there, and we took a picture with Mayor Bloomberg. That, and the party today at the Pendergasts, will be the only barbecues for me this summer, so I am grateful for both of those. It's nice to be in a place where I am not a scary oddity that people avoid looking at. I am going to look for more events like that in the future.
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Have you checked out standing lifts? The Invacare Stand lift was just what my mom with ALS needed. The Hoyer is still around just in case she falls on the floor and needs to be lifted, but mostly my 3-year-old just uses it to lift a stuffed monkey. Fun at Grandma's house! Good luck and God bless.
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