Hello All,
First, apologies for the lengthy post, I'm wordy
I've been lurking around here in the forums for quite some time, reading through the great information and witnessing the wonderful support you provide to eachother and newcomers alike. I've always hoped, since stumbling upon this forum, that we'd find something less scary than ALS to determine what has been affecting my Mom's health over the last couple years. Well, tomorrow will likely be that day where we finally get some answers. I must say, I'm stressed and worried. Yet, also determined to take any news or information we receive in stride and make the best lemonade from the lemons we might be given.
3 years ago my Mom (58 yrs young) was playing golf every weekend and any other physical activity she felt the urge to get into. She began experiencing some back pain, the only trauma to speak of was a fall onto her bottom that caused a bit of pain as it bruised her tailbone, no biggie. The back pain worsened over a period of months and she mentioned the pain would shoot down one leg, and also noticed discomfort in her neck and shoulder. The Docs at the Spine Center examined her a number of times and diagnosed her with spinal stenosis (narrowing of the spinal canal the nerves pass through, some vertibrea more so than others were narrowed enough to raise some alarms) due to artheritis. Two years ago she underwent a spinal fusion to remedy some of the stress on the compromised nerves. Just before this surgery she had been experiencing some foot drop on one side and was in phys. therapy to work on it. Thus began her mobility decline. Foot drop on the other side began, a slow but complete loss of ability to control her legs followed. She managed with the aid of a cane and supports for her ankles for some time, and moved recently to a walker for short distances and a power scooter. We've done all sorts of things to make life easier, from lever knobs on doors to a chair that lifts her to a standing position and a remote controlled deadbolt on the front door.
Last spring one of her Docs told her he believed her mobility problems were more "global" than they initially thought, until this time they had focused on her spine as being the culprit of her mobility issues. She met with a Neuro (who she likes very much) and a battery of tests were ordered. Blood work, MRI's and a second, more thorough EMG. The Neuro stated my Mom has some type of MND, but was unsure of the specifics. Fascics have been mild, almost unnoticeable, but there in her arms for a couple months, she has been losing strength in her hands and arms recently. We did the EMG two weeks ago, a grueling one that took over two hours. All blood work, 24 hr urine collection and MRI's have been completed.
Tomorrow is her Appt. with the Neuro to go over all the results and essentially have the Neuro weigh in with her conclusions.
At times I feel guilty, I can jump, run, climb ladders and roll around on the floor with my young kids. I have a busy life but am also providing as much support and help as I can for my Mom.
A few months ago ALS were just 3 letters of the alphabet and meant nothing to me, now it plays such a huge part of my daily life and occupies my thoughts constantly. It seems that people only learn and become involved in ALS support, research, funding and public awareness when it touches them personally, claims a family member or friend. I wish there was a higher level of understanding and awareness about this and other MND's. Awareness equals research dollars.
My best regards to all of you who live with ALS and care for loved ones who are affected by it and other forms of MND. I'm feeling lucky, so here's to hope!
Joe
First, apologies for the lengthy post, I'm wordy
I've been lurking around here in the forums for quite some time, reading through the great information and witnessing the wonderful support you provide to eachother and newcomers alike. I've always hoped, since stumbling upon this forum, that we'd find something less scary than ALS to determine what has been affecting my Mom's health over the last couple years. Well, tomorrow will likely be that day where we finally get some answers. I must say, I'm stressed and worried. Yet, also determined to take any news or information we receive in stride and make the best lemonade from the lemons we might be given.
3 years ago my Mom (58 yrs young) was playing golf every weekend and any other physical activity she felt the urge to get into. She began experiencing some back pain, the only trauma to speak of was a fall onto her bottom that caused a bit of pain as it bruised her tailbone, no biggie. The back pain worsened over a period of months and she mentioned the pain would shoot down one leg, and also noticed discomfort in her neck and shoulder. The Docs at the Spine Center examined her a number of times and diagnosed her with spinal stenosis (narrowing of the spinal canal the nerves pass through, some vertibrea more so than others were narrowed enough to raise some alarms) due to artheritis. Two years ago she underwent a spinal fusion to remedy some of the stress on the compromised nerves. Just before this surgery she had been experiencing some foot drop on one side and was in phys. therapy to work on it. Thus began her mobility decline. Foot drop on the other side began, a slow but complete loss of ability to control her legs followed. She managed with the aid of a cane and supports for her ankles for some time, and moved recently to a walker for short distances and a power scooter. We've done all sorts of things to make life easier, from lever knobs on doors to a chair that lifts her to a standing position and a remote controlled deadbolt on the front door.
Last spring one of her Docs told her he believed her mobility problems were more "global" than they initially thought, until this time they had focused on her spine as being the culprit of her mobility issues. She met with a Neuro (who she likes very much) and a battery of tests were ordered. Blood work, MRI's and a second, more thorough EMG. The Neuro stated my Mom has some type of MND, but was unsure of the specifics. Fascics have been mild, almost unnoticeable, but there in her arms for a couple months, she has been losing strength in her hands and arms recently. We did the EMG two weeks ago, a grueling one that took over two hours. All blood work, 24 hr urine collection and MRI's have been completed.
Tomorrow is her Appt. with the Neuro to go over all the results and essentially have the Neuro weigh in with her conclusions.
At times I feel guilty, I can jump, run, climb ladders and roll around on the floor with my young kids. I have a busy life but am also providing as much support and help as I can for my Mom.
A few months ago ALS were just 3 letters of the alphabet and meant nothing to me, now it plays such a huge part of my daily life and occupies my thoughts constantly. It seems that people only learn and become involved in ALS support, research, funding and public awareness when it touches them personally, claims a family member or friend. I wish there was a higher level of understanding and awareness about this and other MND's. Awareness equals research dollars.
My best regards to all of you who live with ALS and care for loved ones who are affected by it and other forms of MND. I'm feeling lucky, so here's to hope!
Joe
