05-27-07 I now have a Blog I call: "Moments With Debbie" I hope to be more current on my progression with ALS.
01-31-07 I quit taking Prednisone even though I felt it helped my breathing. My pulmonary Dr. thought so too. The side effects were swelling of the face, hands, weight gain. I gained 20 pounds !! I was growing out of my clothes and my chair!! It also caused my skin to become thin, a simple bump on the knee would tear the skin and bleed. I wasn't on it that long!
01-01-07 Hope it's a good one ~
05-11-06 I finally made an appointment with my family doctor for the redness, burning, swelling and pain in my knees and for the pain in my neck. I had x-rays and a Bone mineral density (BMD) test. The x-rays confirmed Osteoarthritis also called degenerative joint disease, the most common type of arthritis. The bone mineral density test showed Osteoporosis. (Osteoporosis is a progressive disease that causes bones to become thin and brittle, making them more likely to break.)
For the Osteoarthritis I am taking Prednisone, a corticosteroid hormone (glucocorticoid). Darvocet for the pain and Prilosec for stomach discomfort. For Osteoporosis I take Miacalcin (nasal spray), a medication that slows the rate of bone loss and relieves bone pain and calcium and vitamin D supplements.
03-15-06 In my early stage of ALS I cried a lot. I cried when I was happy or angry or alone or surrounded with family and friends. Since my diagnosis and antidepressant medications (Prozac) (Elavil) my crying has been subdued. Until last night. I woke up crying. Tears just poured from my eyes. I don't remember any dreams or nightmare. I just woke up crying. The most unusual feeling.
02-28-06 It’s time for a commode transport wheelchair. Chris found a good deal on E-bay. The bathroom is small and the door is narrow so Chris changed the hinges on the door. The chair fits through the door and over the toilet. Just like any new equipment, I cried. Once I realized this could keep me from falling in a most embarrassing position. I got over it.
02-24-06 For the past 3 weeks, I have been experiencing painful muscle spasms in both thighs. My legs tremble when I stand now and I can only support my weight for about 30 to 45 seconds. I recline with my feet elevated on two pillows for about 12 hours a day. My knees become red and hot much like a sun burn and my legs ache.
02-08-06 I set the alarm off on my BI-PAP 2 or 3 times a night. I don't always wake up when it happens. Chris will adjust my mask and resets the machine. I have an appointment with my pulmonary doctor. May need an adjustment or think more about a ventilator. I don't know if I have the courage. I admire those who have. It takes more courage to live with ALS then to die with ALS. For now I don't want to be vented.
12-13-05 Good news and many thanks! I received an e-mail from our Chapters patient services coordinator Peggy Clary that Medicare has approved my Bi-Pap and the masks and tubing will now be covered. Our sincere thanks to Peggy and everyone who listened and cared enough to help.
11-11-05 "Battling for my Bi-Pap"!
Funding for my Bi-Pap has become a tremendous hassle. About 6 months ago after
having the machine almost 5 years, I was informed that Medicare has denied approval
for my machine and that the provider which I will not name wanted the machine
back. Thankfully the respiratory therapist there refused to take the machine
from me. The reason I got was that my diagnosis did not warrant a respiratory
assist device. WHAT? I still have not had an adequate answer to
that but we do believe that the provider originally coded everything wrong and
that has totally messed things up. I got my local ALSA chapter involved who
in turn got the National ALSA involved. An ALSA lobbyist in Washington DC informed
my Congressman who interceded on my behalf with Medicare. Everyone that I have
turned to have been very helpful and cannot believe that I was turned down for
a Bi-Pap. Unfortunately I just received a letter from my Congressman stating
what I have already been told and basically that he is unable to help me. Well,
back to square one. One good thing though is that the provider informed me that
they "wrote off" the machine and that it is now mine. My problem now is that
since Medicare denied the machine, they will not pay for replacement masks,
head gear, hoses, repairs or even a respiratory therapist to set the machine.
I have not given up the fight and I will keep you informed of any updates.
10-25-05 I am thinking about starting a new section on my web-site containing stories about PALS or anything related to living with ALS. I do believe that we can learn from each other's stories. If you have a personal story about ALS, no matter how long or short, and would like to share it with others, just drop me an e-mail. I will let you know how to submit it to me. Hopefully this can become a nice new feature to Focus on ALS.
10-24-05 Chris and I are extremely grateful for all the family and friends who supported us at the walk 2d'feet ALS. Thank you! Thank you for caring. Thank you for your time and generosity, your encouragement to all PALS to stay and fight ALS until it is cured.
07-21-05 I haven't been updating as I should. The heat is unbearable! I haven't been out of house for six weeks. Today I went out to the pond. There are frogs the size of rabbits!! and they are every where!
04-18-05 My first Freedom trip to the River Valley Mall in "Big Red"~
Chris cleaned and fixed the door panel, fixed the lock for the toggle switch and laid new carpet. It looks great! Has a lot of room to move around.
Thankfully I have enough strength in my legs and feet to control my chair with up, down, left, and right movements which I like. It's been a very long time since driving my chair. The mall wasn't busy so that gave me a lot of room to drive. It felt great! Chris's favorite store is Radio Shack. While he gets the batteries for the remote that starts Big Red. I cruised up and down, backward, figure eights. :0)
Next stop was Meijers~
We looked and found a pillow I wanted to lay on my lap to keep my arms up for comfort. I wanted to look for a pet toy for our bird, so off I went without Chris. I felt a little intimidated with the narrow aisle but I thought just drive slow and don't run over any children. They're short, fast and amazed by anyone on wheels with no hand control. But it was the tall burly giant that I was trying to get around when he stepped back and thump! I ran over his heels and he nearly fell in my lap! That was embarrassing! I had a panic attack. Forgot what I was looking for. Then on my way back I got caught on a tag and nearly took out a display of bras!! That was very embarrassing! I forgot how big that store is and some aisles are not wheelchair friendly.
04-15-05 Chris and I had been searching for a wheelchair van that we could afford. We checked Ohio Auto and RV vehicle magazine. We placed bids on eBay (that was exciting and disappointing). Peggy Clary, the Patient Services Coordinator of The ALS Association Central & Southern Ohio Chapter helped with new listings being posted in their News Letter. It was a light bulb eureka! moment when I searched Living with ALS digest and found "Lift and Van for Sale (Flint, Michigan) from Dave Simpson". I sent Dave a short e-mail that we were interested in it. Dave sent pictures and info. ROAD TRIP!! :0) Chris my sister Georgia and I drove to Flint Michigan to check it out.
03-10-05 I had my peg-tube replaced and I must say I scare myself into a complete idiot! The only time I had pain severe enough that I needed a pain pill was the very first tube. I remember that pain and in my head I believe the replacement is going to hurt so much I feel faint. It is nothing like the first! It's uncomfortable but not painful. Because the first fitting was the wrong size, I had to have it done twice in one week!!
02-21-05 Time for my Peg-tube to be replaced. My peg-tube has been bleeding a little and was very sore. Feeling very nervous about this one. This will be the fourth replacement but not today.
01-01-05 Happy New Year everybody!! Chris and I celebrated at home with family watching Regis hosting Dick Clark's Rockin' New Years Eve on TV. [Best wishes to Dick Clark.] Karleen (Chris's mom) makes Swedish meatballs every New Years Eve.. oh my gosh they are delicious. We do the count down when the ball drops, bring out the champagne make a toast and wish for peace, drink to good health, hope, and cures for all deadly diseases.
10-25-04 It's hard to believe how fast this year is going. What's more unbelievable is I'm not dead yet! It depends on what mood I'm in to feel grateful or cursed.
02-17-04
I am still not dead yet! Muscle spasms, pressure sores. Waking up in the middle
of the night with a monster migraine! I have never experienced
head pain that severe! Trying to breath deep but can only manage short choppy
breathes telling myself stay calm stay breathing. So far that's been the most
severe pain I have had. Anymore head pains like that makes dying very much welcomed.
I read ALS death is a peaceful calm sleep and you're gone. Easy death ? Is it
because no one hears the gasping, gurgling muffled sounds made.!? I'll try to
stay dying as quietly as I can. Some days I feel it's a curse to have this disease
drag on and on but most of my time is spent being content with what I am able
to do and not to dwell on what I can't do.
My shoulders, arms, hands, legs and feet show
atrophy. I have the look of a baby bird. Big head, skinny neck, fat belly
butt and stick legs and arms.
Yup! just like the picture you see.
~The only disability in life is a poor attitude~
~Scott Hamilton~