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Nurse Shannon

New member
Joined
Jun 14, 2008
Messages
3
Reason
Loved one DX
Diagnosis
04/2008
Country
US
State
Ohio
City
Wheelersburg
First off, I am new here :) My dad was diagnosed with ALS in April...this year. Its a longish story, so I am gonna go through it fast.
My dad and husband were carrying my grandmother down the steps in her wheelchair last September, when my dad caught his toe and tripped on the broken brick step, while we were at the beach. He complained of knee pain and by November, he was wearing a knee brace and had some weakness of his right leg. His doc. told him to get some pt. so he did. MRI shows impingment of the nerve root in his cervical or lumbar area...he kept getting worse.
Febuary 2008, he was showing foot drop in the right leg along with atrophy...he was still walking on his own.
March 2008, he fell...twice, flat on his back, on ice, while scraping ice from the car.He started using a cane, but fell at work on the steps. He got taken off work until he could find out what was wrong with him.
April 2008, he went to Cleveland Clinic, got the ALS diagnosis. Moved to a wheeled walker to walk with. He could not move his right foot. Test showed weakness in all four limbs, but mainly the right leg.
May 2008, he moved to a wheelchair and by the end of the month, wasn't able to stand without assistance. His toes on his right foot began feeling like they wanted to move, so over a weekend, my dad began moving his toes.
June 2008, he is unable to stand on his own, by the end of the month, he couldn't even bear weight. BUT, he was able to move his foot and ankle on the right leg and able to pull the leg up to his chest while lying in bed on his side.
Currently, he is in the hospital. His O2 sats were staying in the low 80's. His stomach is pushing his diaphram up into his right lung base for some reason. They don't know why.
They did a LP on him and it came back clear. He's had several MRI's and the EMG, the MRI'show nerve impingment and something abudding the nerve root...but nothing is said about that.
He has NO problems with swallowing or speech. He's just started having labored breathing. He's got the twitching muscles which has spread from his legs to his arms and body.
I just feel like...its too fast. I mean, we are all just trying to come to terms with the diagnosis...but its progressing so freakin' fast, that it really scares me.
I just don't know what to do...
 

Nurse Shannon

New member
Joined
Jun 14, 2008
Messages
3
Reason
Loved one DX
Diagnosis
04/2008
Country
US
State
Ohio
City
Wheelersburg
Oh nice...I had to post the 666th thread to this forum...lol...
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Shannon! I am so sorry to hear about your Dad. I have a question. If he was diagnosed'ed in April, and he is progressing rapidly, why is he not having issues with his speech and swallowing? Hmmm! I am confused! God bless you guys, and keep us posted. Will be praying for Dad!

Irma
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Well as they say, if you pray, now would be a good time. Funny you should notice the 666. You must be observant. Most wouldn't notice. That said, I'm sorry about your dad and hopefully they will get him a Bipap. It may help his breathing. If you've been reading here you'll know that we all seem to progress differently. Your dad's progress is rapid but hopefully it will plateau as does happen with a lot of us. My breathing was crappy in Jan 05 so I needed a Bipap and it has just recently started to get worse. Don't give up hope. This is a strange disease. Feel free to ask questions or just vent. Most of us have been there.
AL.
 

Nurse Shannon

New member
Joined
Jun 14, 2008
Messages
3
Reason
Loved one DX
Diagnosis
04/2008
Country
US
State
Ohio
City
Wheelersburg
They are fitting him for a bipap today, which was the whole reason that my mom took him to the Dr. on Friday.
My best friend mentioned GBS, which his family doc. was okay with, but the neurologist quickly rules out, then chastised my mom for asking for the LP. Because you know, a patient shouldn't be in charge of their health care or anything like that.
They actually told him "Well really, you don't fit into any catagory. You may have something that noone has ever seen before."
Niiiice....
 
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