Definite Diagnosis

[kellykago]

I received my official diagnosis of ALS on 12/16/16. I knew in my mind that I had it, but was continuing to hope and pray for an alternate diagnosis. I've had some minor progression in my speech articulation and some vocal quality (raspy) changes in addition to EMG findings on my tongue and increased hyperreflexia.

Surprisingly, I am doing well emotionally. I have a strong spiritual faith, supportive family, and a hope for eternity. I have fear for the future, so I just try not to think too far ahead of myself.

My Dr. agrees, that I do have a slow progression, so I have to be very thankful for that. She started me on Riultek, vitamin E, and lipoic acid. I also met again with the speech therapist to get information on message banking before my voice quality deteriorates further. This give me something proactive to do as I process this new information and way of life.

Because my father died from ALS, she believes I have familial ALS, although my genetic testing did not show any abnormalities. Luckily mine is not progressing as quickly has my dad's did.

 

[soonerwife]

So sorry to hear about your dx. We were all wishing it was something else. UGH! I am glad you are doing well though and that they believe the progression is slow.

 

[Firefighter58]

Sad to meet you here Kelly but we all try to support each other. You sound strong with the same attitude as me, really hope you do well.
Al.

 

[lgelb]

Sorry to hear, Kelly, though happy that your progression has been slow. Feel free to offer insight from the caregiving perspective as well.

Best,
Laurie

 

[scaredwifetx]

Sorry that you have been diagnosed. I am happy that you have strong faith and a supportive family.

 

[KimT]

Kelly,
Your faith and the love of those around you will get you through this.
You're in my prayers.

 

[Nuts]

Kelly, I am so sorry to have to welcome you to our club.

You have a wonderful attitude. I am so glad that you have a strong faith to help you through. You are right to not look too far ahead--that will change nothing and rob you of today. Let your family do the advance planning for you, and you live each day to it's fullest.


We will be here for you.
Big hugs,
Becky

 

[FrJn]

Kelly, I am ever so sad to be welcoming you here, and thrilled that you've found the site!

This place could be typified as having a continual, never ending, come-as-you-are party! On those days when even small achievements have been made, please do share those with us. And, on those days when it seems as though the sun will never again shine, likewise come on in, have a seat, and share those times with us as well. Despite all that you pass through, this group will never shun you, nor make you feel even more badly. We are, quite simply, fellow sojourners on this pathway and we know quite well that through which you may be going at any point in time.

Reach out to help, or when you need to be buoyed!

John

 

[swalker]

Very sorry to hear of your diagnosis. Know that you are welcome here.

Steve

 

[kellykago]

thank you everyone for your support. It's nice to know there is somewhere to turn where people understand.

 

[FrJn]

Kelly, I believe I read on another post that you had a career in engineering. May I ask which flavor? I had a 40-year career as a "Civil" and, during the last 25 years of that career also served as a non-stipendiary priest, doing supply work around the Diocese as the need arose. In December of 2012, I returned my licenses to the Registration Board and transitioned to full-time ministry. Now, regarding the engineering, I told folks that I was "Civil.... Most Days!"

My sub-specialty was Transportation Engineering and I did much of my early work in Airport Planning and Design. I did both Air-side and Land-side improvements on several airports in the northeast and was privileged to do several ANCLUC (Airport Noise Control and Land Use Compatibility) studies in fairly major urban areas surrounding airports, in the infancy period of such studies. The "softer" side of engineering appealed to me for several reasons.

How about you, dear lady? Which flavor of engineer were you, or am I having a "Senior Moment" in thinking I read of you having an engineering background?

John

 

[CarolSue]

Sorry to hear of your diagnosis. With that said, This place is wonderful....I come here often. I don't always post replies but I'm usually around reading and learning from the wealth of knowledge here.

You are a different sort of member though..like Nikki, you will have been on both sides. My heart goes out to you...

CarolSue