Kara Lynn .NET Blog

Saturday I tried to move, lift, drag, push the big mattress on Lew’s bed. With so little hand, arm, and shoulder strength, I utilized my abdominal and back muscles as I usually do. This time my lower back was not up for the task. I should have stopped, but I resisted defeat and now I’m paying for it. I’ve had a herniated disc at L5-S1 for several years now and from 2001-2003 I was largely incapacitated by it. Back then I didn’t have a 30+ pound toddler to carry around and it still took two years to heal. I’m barely able to carry him down the stairs, but that’s exactly what I have to do several times a day after he uses the bathroom (we don’t have one on the first floor) and to bring him downstairs from his bedroom. He’s able to climb up the stairs now if I spot him from behind, but he doesn’t go down the stairs yet, so I carry him. Oh how I wish we had a single level house right now!

Today my back is much worse. I’ve had the phone in my pocket all day. I do that a lot since I don’t have an emergency button… you know “I’ve fallen and I can’t get up!” On days like today I’m extra careful to make sure a phone is attached to me. I glance out the windows regularly and take inventory of the neighbors’ cars. Is there someone home who can help if I get in a jam? I have Michele and Sonia on speed dial. I’ve already called Michele several times when I needed a hand, but always when she wasn’t home. Sonia has given me her cell number and promised that no matter what she’s doing, if she’s somewhere within this state, she’ll drop everything and get over here to help. She is a blessing. Clare also tells me to call her anytime I need anything. God bless her. She has two toddlers and a new baby on the way. Still, she wants to help. She lives on the other end of the neighborhood. I wish she lived closer as the hills around here are now keeping me from strolling Aiden down to her house. It’s uphill all the way back. The last time I did it was a real struggle. I was afraid I wouldn’t make it home. Aiden loves her kids. It’s so cute to see him flirt with the girls!

Phew! I made it past lunch and to nap time. I tried to nap myself, but didn’t get much sleep. Aiden woke up early. I got him a snack and Lew came home just as he finished eating. I am never so happy and relieved as when Lew comes walking through that door. I’ve asked him to massage my back tonight. I hope he gets time.

My back is strong, but how much can it take? Carrying and holding up the failing rest of me? This tall and sturdy tree is still vertical, reaching for the sun while her branches weaken and drop, but I fear she’s leaning, falling slowly. Her core, her strength is my last hope.

-kara

Uh boy… it seems like every other week I’m trying to figure out another way to compensate for yet another change brought about by the entity ALS who continues to harbor in and reshape our lives. He is relentlessly annoying, but I don’t exactly hate him. I don’t have time to hate him. I have a child to raise, a house to run, lives to manage. So I’ve made room for him, tried to give him his space. But he’s a clingy dependent who won’t be ignored. He squirms and squiggles. I wish he’d settle, and just when I think he has, he wakes up screaming… he wants it all!

No matter how I try to live my life above him, I’m always in his reach, and there’s nothing he won’t pull to draw my attention back. Last week I moved out of the queen-sized bed and into a twin adjustable bed with an air mattress. Now I can sleep. That’s one for me ALS. Lew sleeps on the queen bed, a single ridge running midline under the blankets. He looks abandoned. That’s one for you ALS.

-kara

You bet! Another long-time ALS survivor said to me “I know Mac users are diehards, but you might consider a pc since there is more assistive technology for PCs.”

Consider a PC? No way! There are four Macs in this house and we like it that way. I was a PC user way back when, but once you go Mac…

My friend is right about there being more assistive technology for the PC and that’s a real bummer, but I’m still not giving up my Mac. There is some great assistive technology designed for OS X from a company called AssistiveWare. They’ve really got some great products. Check out their website:
http://www.assistiveware.com/
Be sure to demo some products and watch the videos of real people using the software.

What I want is a small portable communication device with a high quality voice (honestly some of the robotic voices are harder to understand than my poor ALS affected speech!) that is compatible with my Mac. As for compatibility, I think I just want to be able to transfer text back and forth between the device and my Mac. If you know of anything (and it would be covered at least in part by Medicare), please let me know.

-kara

Okay, I’ve finally set up a page for my videos. These are mainly home videos, probably only of interest to friends and family, but I will try to post some related to living with ALS also… how about little learning videos on how to get around the kitchen and prepare a meal with no fine motor skills! Maybe! Who knows? This first video is just the result of an impulse. My iSight camera was right there in front of me so I grabbed it and began my little experiment. I’ll use the digital camcorder in the future and maybe a tripod!

Here’s the link (you can subscribe in iTunes by clicking the subscribe link):

HTML web page:
http://www.karalynn.net/videos/

The “Videos” web link is also in the sidebar menu to the right».

-kara

No, no… I don’t mean letting go of life. I mean letting go of the sludge and waste I’ve gathered while dredging through this life. Letting go of those unkind, who have turned their own burdens into weaponry; of those who have tightly guarded their own insecurity and turned it into life-devouring jealousy; of those who nurture resentment born of spite; of useless hate… theirs and mine… for I had hated them for their hate. But hate no longer reaches me and I no longer feel the tug to spar with it. What surrounds me now is only light. Whatever anger rises to flirt with me, I’ll not oblige. Goodbye traps, manipulations, and entanglements. I let you go.

-kara