Speech problem now a work problem

[jellis86]

Well the day/time has, unfortunately, come where I am having extreme difficulty performing my job.
Today I had to send a letter to my higher ups of my inability to continue much longer in my current position due to my Dysarthria.
It was NOT an easy email to write or to send. I enjoy my job and get along wonderfully with my co-workers. But I am having more and more difficulty communicating with our customers.
My other issues, emotional lability, eating, and some slight swallowing difficulties, are not really affecting my job yet.
So far I can still perform all the physical requirements...but communicating with our passengers is by far the lions share our job.

I was really hoping I could hold off longer, but my speech is really deteriorating to the point that I am unable to fully articulate anymore.

 

[eibhlin]

You have my sympathy. My speech is getting more slurred, but I am already in a nursing home. I had a prior disability before I got the ALS so I didn't have to deal with work. I'm surprised your arms and legs are good enough for you to work. Your employer may be able to give you work that won't involve speech communication. That would be the ideal solution. Good luck.

Eileen

 

[jellis86]

Eileen, thank you for your reply!

So far I have no limb involvement as far as weakness is concerned. So working the physical aspects of my job isn't a problem.

I did request that I be placed on some other duty that either requires less communication, or none at all. Probably be quite difficult in a customer service environment, especially since I fall next in line to take over for my supervisor/manager when she is on vacation or sick. That responsibility requires communicating more customers and co-workers and also lots of phone/conference type calls. Not good at any of those things anymore.

 

[dbach]

Jellis, I am SO sorry that you had to send that email and hope your employer will be able to put you into some other capacity and you will be able to continue working with people that enjoy and get along with. I'm still working, but am having difficulty 10 finger typing and have to (often) switch to a two finger hunt and peck method as my right hand (where the ALS started) gets very fatigued. I know I am going to have to do the same as you some day, but even though we know it's coming it's hard to mentally prepare for isn't it.
Thinking of you during this difficult decision.
Darryl

 

[jellis86]

Thanks for the kind words Darryl!
Got the news from my HR department that I will need to go on disability since they can't accommodate me in a position where I wouldn't need to communicate much.
Fortunately, I work for the government and they have disability retirement, I have over 22 years in, and it compensates for SSDI...plus a great health care program and life ins. etc.
So I didn't choose the route, but since I have to take it, I'm glad for my family that I can still keep us going.

 

[HelenL]

Hi Nellie, sorry that you're leaving work due to your speech issues. A friend of mine gets botox shots in her vocal chords in order to be able to speak... not sure if what you have is similar or not. Good luck!

 

[jellis86]

Helen, I have heard of botulinum toxin type-A injections working for lingual (tongue) dystonia too. I would love it if they find out I had something so correctable!

One thing is for sure...my neurologist can't explain why after a visit to the dentist last September, with Novocaine injections into left jaw/cheek and gums to repair a broken filling near the tooth nerve, my tongue regained about 80% of it's mobility and my speech was much improved for the next few days too. Since then my tongue has slowly returned to it's "pre-Novacaine treatment" condition. So who knows?!

 

[jellis86]

Staying at work!

Well...it now looks like my work place is going to try and make accommodation for me! I am glad because I am not sure how long it might take to get disability approved. From others I have heard from, it can take 12 - 14 months within the federal worker system.

So for now, I get to keep working!

 

[vickim]

Yea! I am happy for you. Keep us posted and sending hugs.

 

[momap53]

Great news! So glad that they will accommodate you!

 

[Wings]

Jelli so sorry to read that hun... I notice i get far worse on the phone/skype than in person - in poerson you can get away with far less "talking" via gestures nods etc - giving the voice rest time. Heleni thats fascinating re botox injection in vocal chords... and Jelli - re the tounge also... Im going to check this out.......Jelli check with your dentist to see if the novacane injection had some adrenalin in it?

 

[HelenL]

I can find out what the treatment is called and post it... maybe it would help. She has it done in Boston.

 

[daigs]

Hi Jellis I am hoping for the very best for you.

 

[jellis86]

Mayo Clinic Dr Eric Sorenson confirmed my initial diagnosis of ALS from 01-28-2013.

They performed an EMG yesterday with significantly different results than my test from 09-28-2012. I have uploaded it to my pictures on here.

His physical exam says that I also have very slight weakness in my arms, left more than right. I have not really noticed this but anything is possible these days. Also some tongue atrophy and fasciculations in tongue and arms.

He noted both UMN and LMN signs...my reflexes remain brisk, they always have been. Babinski was negative as was jaw jerk.

 

[Nighthawk]

You mention: "Babinski negative", right?

I had thought Babinski was the hallmark to confirm the detection of UMN damage.
I must have been wrong all along then.
No wonder why so many people are getting the "ALS" label then.