Blog

Continuing my journey

What a ride this has been. Almost 6 months have passed since that dreaded day. Just an update. I now have the dps, which got infected and was unable to use for 30 days. infection has been gone probably about two weeks now. I got the peg tube replaced with the mic-key. so far no trouble. I don't know if it is als related but my left hand is hurting. it started out with just tingling in the pinky and ring finger. but now when I wake it is painful. I use a hand device when I sleep and a glove during the day.

still don't fit in any boxes.

Well back to Dr Dick... the ivig thing was deemed pointless,no improvement,only effect was just some skin issues.. spinal fluid was normal...but fasciculations, esp top half was described as florid..arms are still heavy and right hand weakness now as well as left...So he's killing a bit more time again,sending us for another emg/ncs and return in the future...ho hum eh?

polite hotkey to suggest dihals types go away

Well -- Several of us have tried to share our experience with you and your fears. The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS. We do empathize with your fears, but there is no more we can help you with at this time. This note is not to deter you from your investigations, but just not on this forum. You asked, we answered, so please move on.

Stacked breathing, also known as breath stacking

Stacked breathing, also known as breath stacking, is a specialized type of exercise that typically caters to people who have respiratory difficulties, but also benefits athletes and virtually anyone looking to improve their lung capacity and breath control during exercise. Practiced regularly, breath stacking produces numerous benefits for athletes. Technique

Things are getting harder

Things are getting harder for me to do. What things you ask? Just everything. Getting dressed is a real workout for me. I'm tired and have to rest after. Eating is becoming more difficult too. I am grateful that my progression has remained very slow compared to most PaLS. I feel that affords me more tine to Advocate and help others. I fell in January and broke my knuckle which has seriously hurt my ability to make a fist with my good hand.

Think

Eccl. 11:3 3 If the clouds are full of rain, they empty themselves upon the earth; and if a tree falls toward the south or toward the north, in the place where the tree falls, there it will lie.

Power Chair Part 2

Well, it took 87 days, but I am the proud owner of a Volcano Red M300. Added bling to it and it is looking fine. Best thing of all, the DME company took the insurance as full payment. So NO copay. That money we saved is going towards the van. Permobil expedited the order because I was facing a reset of my deductible and wanted it done before then.

Background 2

My PALS continued go to work after his diagnosis, working more and more from home. He would use the walker indoors and use his PWC outdoors. Even after he could not really walk much, he would take at least a few steps, or rather shuffles, holding the walker until about the beginning of 2014. We got a Hoyer type patient lift in August 2012. We started using it regulary sometime in the Fall of 2012 for transfers.

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