Welcome to my blog. I have had ALS for 10 years now.


Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Thursday, November 6, 2008

One of those days



I fell out of bed this morning--first time. I realized I didn't have my neighbors' phone numbers in my cell phone--big mistake! I had my alarm on but didn't really want the paramedics called--although next time I will. After a 1/2 hr. of using my head I positioned my walker and with the remote adjusted the height of my bed--and I struggled and struggled to get my butt on the bed.


So what did I learn from this:

1. Never swing out of bed until I put the back up and get a good position.

2. Have my neighbor's and other phone numbers programmed into phone

3. I'll have to figure out how I can put some gripping socks on in bed as my legs are weak so my feet slide on the carpet. My firm slippers are there but I'd need to be sitting to get them on--not flat on my ___!!

4. Have a physio help me recognize what I CAN'T do. For instance, I had no idea how weak my torso was. On my knees I felt like a bobble doll from the waist up. If I was smaller I'd look cute on someone's dashboard. Also my knees were in excruciating pain--no muscle to protect them from the burn of carpet. My toes don't grip any more so I couldn't get my feet positioned properly.

5.Thank heavens I was cool headed--no panic and used my knowledge of strength and positioning to raise high enough to plunk my rear on the bed.

6. It may be time to have a care giver come more often to prevent me from wearing myself out in the day.

7. I can't take pain medication in this weakened state unless someone is here. I get too weak--like last night.

8. Living alone with this disease isn't safe. I'll now rotate my Share the Care Group to have someone call me every morning at 8 to make sure I'm O.K.

PS I'm not hurt, just a bruised ego. Thank heavens both my care giver and my friend Lorraine are coming here today. I'll whine and have them help me set up things to circumvent this problem in the future.

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