How soon

[tripete]

I am noticing that individuals who where diagnosed in 2014 (including myself) still have use if their legs. I would be curios to know how long from diagnosis to needing a chair?

My legs have been getting weaker and weaker and I have been considering the handicap tag as well as wondering how I will know when I will need walking assistance and then a chair?

 

[Nikki J]

Hi Pete I pulled this out into a separate thread as it is a different question.
I think it is very variable depending on progression and area of onset. Those with leg onset and fast progression will end up in a chair early. Those with very fast progression also end in a chair fast. And how early you were diagnosed.
My sister was hand onset but diagnosis took almost 10 months and she had leg symptoms by then. She was using a chair for distances 4 months later and mostly in a chair 9 months after diagnosis but was still walking with assistance a few feet for a while longer
I was diagnosed 2 months after first mild symptom and I am leg onset. 9.5 months after diagnosis still walking just got an afo.

 

[starente15]

My dad has bulbar onset and is still walking ok but we did get the handicap tag, a cane and a walker. In the past four weeks he fell twice in one day and went from using the cane, to getting told by the doctor that he needs the walker. I haven't seen him since but my brother says he looks like he's more unsteady on his feet. We also have a transport chair for when he goes out so he doesn't have to walk around stores, etc.

 

[azgirl]

This answer is different for every pals.

Onset fir me was 8/2013 with left foot drop
Dx 12/2013
AfO IN January. Still walking 2 miles then
Added walking stick when my gait with AFO was off
Added walker this fall when it started to feel unstable
Still walking short distances
Doctor ordered wheelchair evaluation just now to get process started.

I just knew when it was time as I'm trying to avoid falls,and my clinic teAM makes recommendations

 

[tripete]

Nikki thanks for the new thread. Mine was diaphragm inset, it took a year and half to diagnose by wich I had been having hand and feet problems. I know it is different for everyone, but it seems like from the time problems begin in your legs and feet that you have 9 - 18 months before things get to the point of needing a chair or walker?

When do you know to start with a cane? I have not fallen, but anything more than a few hundred yards of walking or 5 stairs makes me feel like I did a 13 mile race.

 

[azgirl]

The pt at my clinic suggested walking stick after watching me walk with just AFO. Also taught me to use it correctly. It's about keeping your gait better so you don't cause other problems from the imbalance.

 

[rosec]

Like the others have said, every one is different.
My PALS' first symptom that something was wrong was a dropped right foot, which started in 2007. Then in the summer of 2008 he fell while playing tennis when he tripped over his own legs. That was when he started seeing a neurologist on his regular doctor's advice. He got the diagnosis of ALS in Nov 2009. Started using a cane after a few months and then a walker. He got a PWC in Dec 2010. He continued to walk inside the house with a walker well into 2011. Eventually he stopped walking about an year ago, by which time it was more of a shuffle than a walk, with one person holding the walker and another walking behind him with a manual wheelchair.

 

[affected]

Pete this truly can't be answered.

It's so hard to say what any persons rate of progression is because the rate can change and you can't always tell what part of the body or what kind of function will be affected next.

There were 3 men here locally with ALS when my Chris was alive - if you had put them side by side no one would have guessed they even had the same disease! Chris was bulbar onset and passed 11 months after diagnosis and was wheelchair for mobility but just managing some standing transfers. Andy was leg onset, so in a wheelchair early and passed 9 months after diagnosis. Pete, the oldest of the 3, was arm onset and is still walking today around 18 months after diagnosis.

We all wish we could have clear information on what is next and when, but we simply don't. We just have to try and do as much anticipatory planning, preparing for everything ahead as we can, then take things a day at a time. I know it's tough - ALS SUCKS

 

[gooseberry]

Pete, My husband is respiratory onset-he presented with a paralyzed left diaphragm and shortness of breath. He is still walking but only very short distances. He has a walker for stability though he doesn't like to use it. He does use his wheelchair-manual-whenever we go out anywhere. He really can't walk more than about 100 ft max on very level ground. Stairs aren't safe for him. He was diagnosed May 20, 2014.

 

[affected]

hey gooseberry, is it possible you can add your diagnosis date in your CP?

I look at those little bits of information pretty much every time I read every post as I can never remember much for more than a moment after it goes past my eyes ...

 

[LoveMyKids]

Tripete, I know you are tired of hearing this, but everyone is different. If you are up to it, I think being proactive is wise. Go ahead and get the parking tags that you need and see if you can go ahead and get a walker or a wheelchair to have available if you find you need it. Unfortunately, symptoms can change over a short span on time and you don't want to risk injury. My hope is that you won't ever need the assistance!

 

[djbailey]

My PAL was diagnosed in March 2014. was in a PWC in May with limited use of walker. By September she could not longer walk and uses her PWC all the time.

 

[gooseberry]

I will

 

[affected]

Hooray, thanks gooseberry. My poor brain relies on those little stats so much