ALS Progression

[JennyC]

My mom was just diagnosed with ALS and I'm curious about progression. I know that it is very personal, some people live for 20 years and some are gone in less than a year but I have no idea what constitutes rapid progression or what is considered slow progression. In November her hand felt weird, by the time of her diagnosis (April) she can't use her left hand at all, its difficult for her to use her arm, her left leg has a toe drop so she falls very often, her right hand is weakening....that seems quick to me but is it?

 

[Nikki J]

Hi Jenny
Sorry you have to be here but I hope you will find help and support here

Progression, as you say, is very individual. It is also not linear so your mom may have plateaus or slowing of progression - or unfortunately the reverse. What you describe sound sort of middle of the road so far not super fast or super slow. My sister was similar to what you describe but had some plateaus and lived almost 5 years from onset. So you can't tell what will happen.

We say plan for the worst , hope for the best. Definitely try to savor each day. If there are things your mom wants to do ( or you do) do them now. When you are ready read the stickies. Staying one step ahead is better and often safer than playing catch up.

 

[JennyC]

Read the stickies? What are the stickies?

 

[gooseberry]

At the top of a section of subforum, it will say sticky then a topic. You must go to the main page of the subforum though

 

[lgelb]

Sounds fairly quick, but that is often the case at the very beginning.
I would make sure she has a rollator right away, and look into wheelchairs.

Best,
Laurie

 

[JennyC]

I wish I could get her to use some sort of device to help but she won't use anything at this point, she refuses to use even a cane especially because she is still trying to hide her condition at work, only her supervisor knows. Whats worse is all the handicapped spots are always full where she works (not that she has asked to get a handicap pass yet) and she has a minimum of a quarter mile walk to get to her office.

 

[twitchykitty]

Could you maybe talk to your mum about why she doesn't want others to know and try allay her fears or worries. In my experience a cane is no good. A face plant into concrete resulting in a fractured jaw and eating soup for a month, then a concussion 2 months later proved that. I strongly suggest as laurie said a walker or rollator if you can persuade your mum without getting her offside. I'm very sorry you're both going through this

 

[azgirl]

Hi Jenny, sorry you find yourself here. Maybe you have read that the number one rule around here is avoid falls. That is the one thing that has been proven, and I can vouch for it myself, that will definitely speed up progression. Encourage all you can to use walkers or canes. Some of us had to learn the hard way.

 

[JennyC]

Falling speeds up the progression of ALS?

She doesn't want others to know because she is a very private person and super professional, plus she wants to keep her job for as long as she can and she can't do it if people know and give her "the look", you know, the pity look. Work is the one place she can even a little bit forget about ALS, her work is harder to do but she is focused and feels more like herself.

I keep trying to get her to use some sort of device to help. I have RA and a number of other conditions and I keep telling her that using devices saves energy so that you can have more energy to do the things that you want to do....not to mention safety

 

[affected]

Welcome Jenny

Not only will injuries from falls likely speed up progression but too many PALS die, usually as a result of head injuries. I've lost count of how many PALS I've known that have died this way.

It is time to sit her down and talk logic. A face plant and injuries in front of her work colleagues is far worse than using a walking aid.

 

[azgirl]

There are many dangers associated with falls. First of all we fall hard because our hands can't reach out to break the fall. Second once we injure joint it is not going to heal like it did before. Here is one example, my worst fall. In December I could still take steps to transfer in the bathroom or into bed. After a bad fall I injured, twisted both knees badly. Since then I had to use alift for all transfers since my knees and legs never regain the strength to transfer. It's hard on the pride to start using braces, walkers but it is the smartest thing to do.

 

[JennyC]

Can anyone provide links that talk about falls making ALS progress faster? I'm trying to find some but can't. If I can show my mom then she might be more reasonable.

 

[affected]

Search here and you will find more real life stories than you want.

My Chris had reasonable use of his right arm and poorer use of his left. He fell, straight over onto his right shoulder - ruptured the tendons. That was the end of his right arm.

And he had far worse injuries on subsequent falls because he refused to attempt to be safe at all. He had FTD.

As azgirl says, the real issue is that PALS just can't do anything and fall hard.

I'm sure no doctor has 'written a paper' about what injuries to PALS does to quality of life and life span.

 

[JennyC]

I just noticed your thing that says Queen of Hearts...funny, my mom is Queen of Swords lol.

Yes she has fallen quite a few times, the whole side of her face was deep purple...

 

[Pecksco]

I've got a Hard Head too but not hard enough....I was using a putter for a cane, fell walking out the front door and broke my neck, had surgery then rehab 8 weeks....I went to a real cane and later fell 3 times in 2 days into tile walls. months later my neck still hurts. I now use a rollater. Your mom needs to be prepared to miss some work if she is not safer.