Status
Not open for further replies.

JoeinAZ

Member
Joined
Jul 9, 2007
Messages
10
Reason
PALS
Country
US
State
AZ
City
Tempe
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
 

jean

Active member
Joined
Jul 8, 2006
Messages
52
Reason
PALS
Diagnosis
07/2004
Country
UK
State
West of England
City
Goodplace
Thanks for posting and telling us about your Mom. If she has ALS you will find this a very supportive community. If she hasn't, then everyone will be really glad for her and for you.
let us know how she gets on.
Best wishes
Jean
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Joe and welcome to the forum. I am hoping you will get great news at the clinic. either way, we're pulling for hyou and your Mom. Cindy
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
Joe, reading your post just makes me hope and pray that my sons grow up to have such love for me. Your support and love is what your mom needs the most and it sure seems like you're there to provide that! I hope the appt. offers you some hope. Keep us informed.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Your children will grow up to be good caretakers Leslie because you are showing them the way! Every time you do things like help them set up the tent for a backyard sleep-out, you build strong memories and strong bonds. BTW_ how is their new school year going? Cindy
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
The public schools here are a little rough, but they are good students and I hope they don't ever give in to peer pressure! There has already been drinking and drugs at the first dance (thank goodness mine didn't go, but all their friends did) which leaves a parent to wonder who to let the kids hang with! It's definitely a lot of mind work! Thanks for asking.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
joe, please let us know how your mom makes out

crystalkk
 

JoeinAZ

Member
Joined
Jul 9, 2007
Messages
10
Reason
PALS
Country
US
State
AZ
City
Tempe
We received my Moms firm ALS diagnosis today. We appreciated the cander of the Neuro, she did not beat around the bush, or try to string us along with more tests that weren't necessary. My Mom has been referred to an ALS specialist who will determine next steps from there. We are digesting the news and will be spending alot of time going over what she wants to do in the near future regarding work, family and play. My Mom is my hero, she is determined to live as long as possible with equal doses of humor and dignity. We were hoping for MMN or something treatable, but if I've learned nothing else, lifes beauty is due to it's inherent fragile nature. There is no better medicine or treatment than a positive attitude, love and a will to keep living.

You will be seeing much more of me around here, thank you all for the supportive words and thoughts. And thanks for creating this online community.. It helps, alot.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
There is no better medicine or treatment than a positive attitude, love and a will to keep living.

Thanks for the reminder, Joe. And thanks for the vote of confidence on the forum. I'm sorry to hear about your Mom. We are here for you. Cindy
 

JoeinAZ

Member
Joined
Jul 9, 2007
Messages
10
Reason
PALS
Country
US
State
AZ
City
Tempe
Thanks,

It's been a very long and frusterating road to get here. My Mom actually expressed a bit of relief in getting the news. Not knowing is sometimes worse than anything.

Heck, she may actually grace our presence here sometime in the future. (Mom, if you're reading this, don't be shy :) )

Yeah it's heartbreaking, but our family has overcome adversity after adversity, challenge after challenge. We will make the best of this, the best we can.
 

larissima

New member
Joined
Oct 4, 2007
Messages
7
Country
US
State
MN
City
St. Paul
Dear Joe, I just wanted to say how sorry I am to hear of your mom's diagnosis. I will keep your family in my prayers, and I wish you the very best of luck and good time together as you deal with all of this.
Best, L
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Joe,

Sorry your Mom got the diagnosed. Positive attitude is definitely needed in this case.

Please keep us informed.
 
Status
Not open for further replies.
Top