:shock: Today, when I awoke, I could not sit up. I was shocked and stressed because I always managed to get up and get dressed. My dietician told me last month, that 8 cans of liquid isocal were enough calories for each 24 hr period. But that is the only food my body gets. I cannot swallow food and I cannot swallow liquid. There are only 237 calories in each can of this nutrition liquid.
I was still only 108 lbs 2 weeks ago. 3 months, only 108 lbs. When I was so weak, this morning, at this low weight, I knew then, that 8 cans of isocal are not enough for me, during 24 hours periods, at only 108 pounds!
I was using a lot of energy, pushing the heavy feeding tube metal pole ahead of me, even three times during the nights, using the bathroom. When my daughter was home to lunch, she pushed the pole, and when she was home after supper, she pushed the pole.
Seven days now I have had a health care worker, hired for fourty hrs. a wk. I sleep only four hours a night bcause of pain in my right thigh, after I sleep 4 hours. I cannot sleep, much, anyway because of my septum. I cannot sleep on my back because my saliva would almost choke me. Losing an exreme amount of sleep, each night, is also causing me to lose weight.
WHERE CAN I BUY LIQUID NUTRITION FOR MY FEEDING TUBE THAT HAS MORE THAN 237 calories IN EACH CAN? PLease, I need an answer to this question. Losing sleep every night, is extremely stressful.
In our small hospital, not one person, knew enough about als. most of them do not know anything about als. Even a head nurse, thought when I walked , it would strengthen my muscles. the PT was going to SHOW me exercises TO PRACTISE, BELIEVING THAT WOULD STRENGTHEN MY MUSCLES! ?
WHEN SHE SAW HOW SKINNY I AM, SHE TOLD ME not to exercise. OF COURSE, I KNOW THAT EXERCISE CANNOT HELP A PERSON WITH ALS! I LEARNED ABOUT ALS AND NO WAY WILL I EVER EXERCISE, THAT WOULD DETERIORATE MY MUSCLES, FASTER.
I WAS DX MARCH 2003 WITH THE ALS BULBAR ONSET. THANKS TO GOD, MY BREATHING IS OKAY. PLEASE, ANY OF YOU READING THIS, WHO BELIEVE IN HOLY MASSES, ASK ALL PRIESTS YOU KNOW, TO PRAY FOR ME AND MY FAMILY DURING HOLY MASSES. I WATCH THOSE HOLY MASSES ON TV AND FROM MY VCR.
I say other prayers and I need others to pray for me.
THANKS TO YOU ALL
Stella
P. S.
I cannot use any other medication, ( because of side effects, ) than my thyroid pills.
But if the pain in my legs, during the night, gets worse, I will have to use pain killers. I do not know, why my legs , after four hours sleep, have painful spots in them. Only one night, last week , the pain did not happen. My sister had told me that she would pray for no pain to awaken me. That pain began tormenting me , during the night, over a year ago.
I was still only 108 lbs 2 weeks ago. 3 months, only 108 lbs. When I was so weak, this morning, at this low weight, I knew then, that 8 cans of isocal are not enough for me, during 24 hours periods, at only 108 pounds!
I was using a lot of energy, pushing the heavy feeding tube metal pole ahead of me, even three times during the nights, using the bathroom. When my daughter was home to lunch, she pushed the pole, and when she was home after supper, she pushed the pole.
Seven days now I have had a health care worker, hired for fourty hrs. a wk. I sleep only four hours a night bcause of pain in my right thigh, after I sleep 4 hours. I cannot sleep, much, anyway because of my septum. I cannot sleep on my back because my saliva would almost choke me. Losing an exreme amount of sleep, each night, is also causing me to lose weight.
WHERE CAN I BUY LIQUID NUTRITION FOR MY FEEDING TUBE THAT HAS MORE THAN 237 calories IN EACH CAN? PLease, I need an answer to this question. Losing sleep every night, is extremely stressful.
In our small hospital, not one person, knew enough about als. most of them do not know anything about als. Even a head nurse, thought when I walked , it would strengthen my muscles. the PT was going to SHOW me exercises TO PRACTISE, BELIEVING THAT WOULD STRENGTHEN MY MUSCLES! ?
WHEN SHE SAW HOW SKINNY I AM, SHE TOLD ME not to exercise. OF COURSE, I KNOW THAT EXERCISE CANNOT HELP A PERSON WITH ALS! I LEARNED ABOUT ALS AND NO WAY WILL I EVER EXERCISE, THAT WOULD DETERIORATE MY MUSCLES, FASTER.
I WAS DX MARCH 2003 WITH THE ALS BULBAR ONSET. THANKS TO GOD, MY BREATHING IS OKAY. PLEASE, ANY OF YOU READING THIS, WHO BELIEVE IN HOLY MASSES, ASK ALL PRIESTS YOU KNOW, TO PRAY FOR ME AND MY FAMILY DURING HOLY MASSES. I WATCH THOSE HOLY MASSES ON TV AND FROM MY VCR.
I say other prayers and I need others to pray for me.
THANKS TO YOU ALL
Stella
P. S.
I cannot use any other medication, ( because of side effects, ) than my thyroid pills.
But if the pain in my legs, during the night, gets worse, I will have to use pain killers. I do not know, why my legs , after four hours sleep, have painful spots in them. Only one night, last week , the pain did not happen. My sister had told me that she would pray for no pain to awaken me. That pain began tormenting me , during the night, over a year ago.