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Joined
May 23, 2013
Messages
18
Reason
PALS
Diagnosis
01/2013
Country
US
State
New York
City
Cedarhurst
I began having a slight balance problem in Sept., 2001. In March, 2012' my foot dropped. It took until January, 2013 to get a motor neuron diagnosis. I use a walker and my left foot is now almost as week as my right. The doctor originally told me it looked like a slow progression but now my hands are slightly losing strength and my left pinky is twitching. Any way to judge how long I have until it spreads to my actual walking? Swallowing?
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
First let me say welcome. You have come to family. :) Each person who develops ALS is different. Some people (like my husband) got ALS in his pinky - and his upper body. It has been a year and he is still doing alot! He refuses to give into it. He has a positive mental outlook and it helps! The timeline really is unusual. He had a heart attack and afterwards was left with numbness in his pinky and ring finger. For a year we thought it was symptomatic of a stroke. But after literally hundreds of tests = we found it was ALS. It moved to his arms and shoulders and eventually his diaphram. He is still eating on his own - but choking. He has done things to help this and a speech therapist helps him with the consistency of foods to help swallow. He is not in a wheelchair yet. (2 years) and he may never be. (That frankly would be a blessing to him.) He is trying to watch our kids graduate from High school. So he hangs in there....Pray for the happy times and enjoy the hell out of them...
 

KissJ

Distinguished member
Joined
Jul 6, 2011
Messages
376
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
Pennsylvania
City
Greensburg
You will learn this over and over here...everyone is different! And, it is so true!
Keep a positive attitude and anti-depressants work wonders in that department! I don't know what my husband and I would do without them!
It has been two years since my husband's diagnosis. However, the doc feels he had it a year before that!
Get out there and do what you can NOW. He was diagnosed in 2011 and we were in such shock that he just wanted to go to the east coast for vacation despite my asking to go on an exotic vacation/dream vacation. We did have a wonderful time going to OC Maryland, Rehoboth DE, the Skyline Drive....
The following summer we went on a cruise. He had never been on one and totally enjoyed it! We drove to Baltimore, MD instead of flying...just too much! We had such a wonderful time about two weeks later we booked another driving to NJ to go. (Royal Caribbean was awesome with handicapped issues).
So, do what you can...NOW.
John has progressed from walking with a cane, to a walker in 2011
2012: using a power chair and walker with transferring just fine to now
2013: Can't walk at all. Transferring is hard! Breathing is rough and getting worse. Muscles are going... Just recently, neck muscles! Feeding Tube. He can still eat with some issues swallowing!
ALS is a Monster! But, my husband is as positive! We are both on anti-depressants...they work. You make it work!
God Bless!
 

ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
PALS are a collection of snowflakes, no two are alike! And there are always exceptions to the rule. When my husband was diagnosed with Bulbar Onset ALS, everything I read had this particular diagnosis on the fast track. The doctor said he probably had three years from onset, at best. Google said the same thing. Well, I'm hoping they're all wrong. My husband has probably had this for two years, considering his earliest signs. Granted, he can no longer talk and eating is becoming a difficult task (PEG tube in place), but he is still driving, typing, golfing in the low 80s, hunting and trimming the trees in our woods. When he fills out the ALS function test, according to the doctor, he appears to be progressing at one fourth the normal rate for anyone with ALS. We are hopeful! I think it's the big question that goes through everyone's mind, "what's down the road and how fast will I decline". Who knows? I pray that yours is as slow now as it has been since onset was perhaps back in 2001. We were told that if you start slow, your progression will remain slow. Sending prayers your way!
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
You can be confident that you will continue to have very slow progression given your history. More difficult is to project where it will show up next. My first symptoms were bulbar in 1994 and yet I can still swallow quite well and my speech, although thick and weak, is still understandable. My limb weakness didn't show up until 2000. Since then progression has been slow but constant. It began in my legs and showed up in my arms a few years later.
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
The snowflake analogy is a good one. My 1st symptoms weakness in my right hand in 2008. Now to spread to my left hand, and my upper body is starting to weaken and I'm using the power chair so I don't fall and crack my stupid head open. No speech or swallowing problems, but my forced vital capacity has fallen from 108% to 70% than 14 months. My advice is not to worry about progression, enjoy whar you can still do, try not to overdo it, and try to find some joy in every day. We are all in this together, and we will help you out however we can.
Hollister
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
ECapara... "PALS are a collection of snowflakes..." I LOVE this! Thank you! I hope you don't mind if I use it in the future!
 

ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
Certainly, Katie C! I may have borrowed that term from someone else at some point, I think it's the only way to collectively describe this crazy disease. I'm sorry for your loss, your husband was our age, way too young. Sending prayers for you, I'm sure it's difficult even today.
 

R9L13026

Distinguished member
Joined
Jun 1, 2013
Messages
123
Reason
PALS
Diagnosis
12/2011
Country
US
State
Hawaii
City
Kona
Any way to judge how long I have until it spreads to my actual walking? Swallowing?

I think this is a great question and one that I've had for the past year. Unfortunately as you can see from the responses, the answer is no. We have to take each day by day. Be positive and keep up your spirit as much as possible.
 
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