Countless muscle spasms throughout my body, the kind that really hurt, focused primarily my neck, throat, and jaw. Usually triggered by effort, turning my head, yawning, looking upwards to name a few activities. Automatic stretches elicit calf, foot, ankle, and toe spasms that pinch and release..
My hands and arms are propped atop pillows to stretch my torso and allow my diaphram to expand to capture as much oxygen as possible. And still, my fingers trigger, my wrists contract, my forearms spasm. If my arms hang at my side, the weight coupled with gravity steals my air, leaves me gasping and panting. Although, I struggle on the commode with a lack of musculature, still there are zings to remind me there is more left to die. This process is not even close to over.
.
I am transported to and from my bed strictly by overhead lift. I am lucky enough to possess a first class sling to assist in this endeavour. (Thank you UWMC!) It's a very large pocketed affair that cradles me lovingly and protectively. I frequently chuckle at the sensation of lift and suspension. Though I beg to be left suspended to watch television, policy rears it's impersonal administrative head. Sorry, no. I imagine modifying the sling to allow me to fly, tummy down. My imagination muscle works just fine!
I'm still able to propel my Permobile thanks to technology changes to my chair. I have switched to a goal post style controller as well as a head-controlled switch to turn on and off and to switch from Profile to Mode and drive. These days I don't get very far before my hand gives out. Last year at this time, I could go until my battery went kaput. In fact, if my controls get bumped, even a little, I could be stranded, as I have no real margin of error anymore.
I've cut back on my Deanna Protocol supplements since going into the hospital last December. To refresh, I went into the hospital with a nasty congestive something or other and almost met my demise trying to choke out my airway. During my 50-day stay, I was sans supplements and I reassessed my percieved benefits, cost, and hassle factor. I decided to pare down the routine to the "most important" ones as marked on the list. Is it still effective at knocking back the fasciculations and preserving my speech? Not so much. I'll not be reordering the AAKG, glutathione, nor the AKG. What's the point at this point? This is, essentially, a losing battle. Don't get me wrong, I have not given up. I'm just not willing to grasp at straws.
I'm using my Tobii a whole lot more with the decline of my speech. It has been a rocky road in that arena. My Tobii been back in my possession just a couple weeks as it needed the eye gaze bar replaced. I thought they all worked crappy...Turns out mine had a simple defect. Declining speech can be extremely frustrating but it can also be a great source of laughter. Caregivers constantly get my words wrong and the last thing they seem to think of is putting my speech device in front of me. Or, this is a good one, they offer to put it in front of me when I'm lying down on my side or when my eyes first pop open in the morning when I can't even hold my eyes open. As you may or may not know, one must be able to focus and one is hard-pressed to operate a Tobii sideways. Not possible unless you are adept at repositioning the device on the mount. Trust me, not easy. They know not what they ask.
I am still on a regular diet, sort of. I remove items as they become problematic. The best news is that I can still eat chocolate. Seattle Chocolates, Boehm's, Dillatante', Hawaiian Host, Lindt Lindor, all my favorites!
My hands and arms are propped atop pillows to stretch my torso and allow my diaphram to expand to capture as much oxygen as possible. And still, my fingers trigger, my wrists contract, my forearms spasm. If my arms hang at my side, the weight coupled with gravity steals my air, leaves me gasping and panting. Although, I struggle on the commode with a lack of musculature, still there are zings to remind me there is more left to die. This process is not even close to over.
.
I am transported to and from my bed strictly by overhead lift. I am lucky enough to possess a first class sling to assist in this endeavour. (Thank you UWMC!) It's a very large pocketed affair that cradles me lovingly and protectively. I frequently chuckle at the sensation of lift and suspension. Though I beg to be left suspended to watch television, policy rears it's impersonal administrative head. Sorry, no. I imagine modifying the sling to allow me to fly, tummy down. My imagination muscle works just fine!
I'm still able to propel my Permobile thanks to technology changes to my chair. I have switched to a goal post style controller as well as a head-controlled switch to turn on and off and to switch from Profile to Mode and drive. These days I don't get very far before my hand gives out. Last year at this time, I could go until my battery went kaput. In fact, if my controls get bumped, even a little, I could be stranded, as I have no real margin of error anymore.
I've cut back on my Deanna Protocol supplements since going into the hospital last December. To refresh, I went into the hospital with a nasty congestive something or other and almost met my demise trying to choke out my airway. During my 50-day stay, I was sans supplements and I reassessed my percieved benefits, cost, and hassle factor. I decided to pare down the routine to the "most important" ones as marked on the list. Is it still effective at knocking back the fasciculations and preserving my speech? Not so much. I'll not be reordering the AAKG, glutathione, nor the AKG. What's the point at this point? This is, essentially, a losing battle. Don't get me wrong, I have not given up. I'm just not willing to grasp at straws.
I'm using my Tobii a whole lot more with the decline of my speech. It has been a rocky road in that arena. My Tobii been back in my possession just a couple weeks as it needed the eye gaze bar replaced. I thought they all worked crappy...Turns out mine had a simple defect. Declining speech can be extremely frustrating but it can also be a great source of laughter. Caregivers constantly get my words wrong and the last thing they seem to think of is putting my speech device in front of me. Or, this is a good one, they offer to put it in front of me when I'm lying down on my side or when my eyes first pop open in the morning when I can't even hold my eyes open. As you may or may not know, one must be able to focus and one is hard-pressed to operate a Tobii sideways. Not possible unless you are adept at repositioning the device on the mount. Trust me, not easy. They know not what they ask.
I am still on a regular diet, sort of. I remove items as they become problematic. The best news is that I can still eat chocolate. Seattle Chocolates, Boehm's, Dillatante', Hawaiian Host, Lindt Lindor, all my favorites!
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