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SyncOrSwym

Active member
Joined
Oct 7, 2016
Messages
32
Reason
PALS
Diagnosis
09/2016
Country
US
State
WA
City
Shelton
Hello, All.

I was diagnosed with ALS last month, but I had a couple of very public falls before that and another one a week ago at a crowded restaurant. In that one, a "helpful" person pulled me so far forward (getting up from a booth), that I fell onto my knees -- and once I'm on the ground, I CAN'T get up. (No leg strength or arm strength, so I can't push myself up.) Luckily, the manager was both a big guy and a great guy. He asked me to put my arm over his shoulder, and when I told him I couldn't lift my arm that high, he crouched down, got his shoulder under my armpit and stood up, lifting both of us. 'Course then I had to stand there for a few minutes to "get my pins back" while all the customers assured me there was no need to apologize or feel embarrassed.

Not totally sure why I'm posting this, but it's sort of a way to say "Hi" to the Forum members, I guess.

Regards,
Ed
 
Welcome Ed!

So sorry you have joined us.

Are you using any equipment to help you with walking?
Please consider doing so - falls can be so dangerous. At best embarrassing, oh you know that one. Next even not so serious injuries can hasten progression, or leave you with pain the rest of your life.

Then the serious ones - they can kill, or do terrible damage that may not ever heal properly. (we have lost too many PALS to falls)

Fight ALS by staying safe please.
 
Hi Ed! Nice to meet you! Sorry to hear about you diagnosis and your falls.
 
Welcome Ed. I hope you find this group to be as supportive and knowledgable as I have.
Wishing you peace for your journey.
Margaret
 
Hi Ed, and welcome to the family.

I'm so sorry about those falls. My husband went down at his favorite breakfast place and couldn't get up--his buddy finally had to insist he use the walker for safety's sake.

Please Please use tools to protect yourself. A fall at work left my guy needing back surgery, and that surgery put him immediately into a chair, ending his walking days early.

How are you handing the diagnosis?

Becky
 
Welcome Ed!
Are you using any equipment to help you with walking?

Thanks Tillie. I'm not sure what to use yet, but I can still walk, as long as I can get vertical. Seems like every other day, I find something else that I can no longer do to get up. It's getting VERY difficult, for example, to get up from the toilet. (Which occurs quite often now because my bowel muscles seem to be joining the general bodily revolt -- along with lungs, hands, fingers, arms, legs.)

Regards,
Ed
 
Last edited:
How are you handing the diagnosis?
Becky

Thanks, Becky. It explained a lot of what's been happening all year. Problem is, I seem to be the only one (between me and the Neurologist) who cares. She scheduled another meeting at a month and a half (after diagnosis), and scheduled a meeting with a Pulmonologist at two months after. No other communication.

Regards,
Ed
 
Do you attend a clinic Ed?

An assessment is needed to help decide what kind of aid you need at this point - there are quite a few options. Usually and OT or PT would check you over.
 
Hi Ed,
When my husband and PALS started needing help to stand I found a transfer belt called Grip-n-Assist ( Gladbelt.com ) which made all the difference in the world. It can be used either with the handles in the front high on the chest or with the handles in the back at the waist. It also enables a CALS to help you balance when needed. It has been one of the most helpful aides on our journey. Kate
 
Hi Ed,

I am so sorry to hear about your fall.

I want to encourage you to get a power wheelchair.

Falls will eventually do more than hurt your pride, and when they hurt your body you will find that recovery is very much slower than it used to be. In fact, you may not recover completely, thus effectively speeding up progression.

I used to fall a lot. Way too much. Once I got the power wheelchair, I found that I was not falling nearly as much. Using the wheelchair allows me to conserve what I have so that when I am walking I am much less likely to fall.

I can pick and choose when to use the wheelchair and when to walk. Occasionally I make poor decisions regarding this and the result is sometimes a fall.

For more about what I think about power wheelchairs I refer you to this post, which I wrote some time ago. https://www.alsforums.com/forum/tip...6-things-i-have-learned-about-wheelchair.html

Good luck, and take whatever steps are necessary to not fall.

Steve
 
Hi Ed & welcome.

I second the gait belt. When my husband's walking became unsafe, he used the rollator and I walked behind him holding on to the gait belt.

He only agreed to this after a fall outside in the pouring rain and only me to help him up.

Stay safe

Joan
 
Do you attend a clinic Ed?

An assessment is needed to help decide what kind of aid you need at this point - there are quite a few options. Usually and OT or PT would check you over.

No, Tillie -- I don't even know where (or what) a clinic is. What do I search for?

BTW, what do OT and PT mean?

Thanks,
Ed
 
When my husband and PALS started needing help to stand I found a transfer belt called Grip-n-Assist ( Gladbelt.com ) which made all the difference in the world. Kate

I second the gait belt. When my husband's walking became unsafe, he used the rollator and I walked behind him holding on to the gait belt.
Joan

Thanks, Kate and Joan. I looked at the site, and they are really proud of their products, aren't they? But we'll definitely think about it.

Regards,
Ed
 
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