New kid

[ShiftKicker]

Hello-
Just thought I'd introduce myself here. I had asked a few questions on the DIHALS thread previously, but am now reluctantly part of the general population here.
I have been told by two separate neurologists, one of whom is a BC ALS clinic director, that I have either PLS or UMN onset ALS- it's the waiting game. I'm 7 months in with mostly UMN symptoms, but spreading. Currently I have had little emotional reaction, as I've just been focusing on getting an actual firm diagnosis- so far it's just Motor Neuron disease. I have been referred to the ALS clinic here to access their resources, but am unsure when that will be. Currently I'm trying to figure out what to tell people, or if I even should, because of the lack of definitive diagnosis.
I am still ambulatory- with great difficulty- but am showing slight bulbar signs and mild arm/hand spasticity as well. I look at how you all are coping with every roadblock and crisis thrown your way, and can not help but admire the grace and humour you exhibit. I hope I will be able to exhibit the same.

 

[Gembead]

Hi Shiftkicker, sorry to say Welcome, but you are amongst friends here where you will receive lots of help and support.
Love Gem

 

[Green Queen]

G'day there...I'm sad that you have such a waiting game ahead of you.
Welcome to this forum.
God bless, Janelle x

 

[Nuts]

Sorry to have to welcome you, but as you know, you've found a home here. Given what you've been told, try to forget the waiting game and do two things: prepare and enjoy. Telling others seems to be a very difficult step--it makes it more real when they know. Since you are having difficulties getting around, it might be helpful for them to understand why. Of course, then you have to deal with THEIR emotions, but if you maintain a sense of humor perhaps they will take their cues from you. Again, welcome!

 

[djbailey]

Welcome. I would recommend that you tell your family and close friends as they will start forming your support group. It takes time for them as well to accept and understand what you will have to deal with and get mentally prepared to help you.

 

[chally]

hey shift, welcome, let family know as seems fit, they are your basic support group. sense of humor most important. 1love chally

 

[avnl]

My husband was in the same diagnostic confusion with upper motor neuron findings. We were first told Hereditary Spastic paraparesis which was then changed to PLS because of bulbar symptoms. He has continued to progress but no lower motor neuron findings on EMG. All this started 11 yrs ago. We just told people upper motor neuron disease.
We just look at what is an issue and problem solve a solution. Max''s rules are good particularly the do not fall one. I wish M might have followed that one a bit more carefully. I am the one that is anticipatory. Despite the losses, we have learned to not sweat the small stuff and that there is joy to be had, despite this awful disease. I married M because he said he could have fun in a paper bag. Little did he know this trait would serve him well! Good wishes.
Anna

 

[MaxEidswick]

>so far it's just Motor Neuron disease

fine understatement

remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!

 

[ShiftKicker]

Thanks very much for your welcome.
Anna, you're right- very similar situation. I was also checked for Adrenoleukodystrophy and Paraneoplastic (how bizarre to be devastated to NOT have cancer?) and some other really whacky stuff. What a rabbit hole!
I told my husband last night and, having his priorities straight, he immediately poured us some scotch and we sat on the porch and just talked about random non health related things- and spoke about going on a long road trip. Planning for this thing starts some other time.
A note- my forum moniker is my old roller derby name. My son had a hot wheels car by the same name and thought it was a good name for me to have. Being 6 at the time, he had no idea why everyone thought it was so funny. As a cynical 16 y old now, he thinks it's pretty bad*ss. Having participated in my derby league's ice bucket challenge last year, it seems very ironic to be here now.
Thanks again. Your welcome gives me some foundation and security knowing there's a group of people out there who know what's going on. Hopefully, one day, I'll be able to give back by providing my own insight and experience to other incomers. Warning, my very dark sense of humour can sometimes break free.

Fiona

 

[Jeanau]

Fiona...sometimes some very dark sense of humor is just what we need!

 

[anderkling]

Fiona, welcome to this forum. I live near you. The ALS Society is fabulous. They provide an abundance of equipment, resources and support in every way. I attend the Vancouver support group. I will send you a visitor message and tell you more.
-Charlene

 

[LittleKnight]

Hi Shifty, welcome to this group. I'm new here myself, and still more of an advice-taker than advice-giver, but in regard to this:

I have been referred to the ALS clinic here to access their resources, but am unsure when that will be.

let me tell you with certainty: you need to get involved with a clinic (one that you're comfortable with) as soon as possible. Don't wait for them to get back to you: keep calling, do research online, ask doctors, and make visits. Go to more than one clinic and compare. When you do find the right clinic, it will make a world of difference!

 

[Mtzu]

I told my husband last night and, having his priorities straight, he immediately poured us some scotch and we sat on the porch and just talked about random non health related things- and spoke about going on a long road trip

Fiona, I hate to see anyone else having to join this club. It's not a place any of us wants to be. That said, it looks like you and your husband are taking this hard news in stride. Live, love laugh and take every adventure you can while you can. Being that you've been in the roller derby, I'm sure you know how to take hard knocks, get up, dust yourself off and get back into the game (just don't forget Max's rule #1).

Also, the dark sense of humour is precious. Please share often!

-Michael

 

[LifeEnthusiast]

First ShiftKicker, I sadly welcome you here. I am new this forum too, aside from my silent lurking when I was in the DIHALS category. I am in a similiar position. I have been diagnosed with PMA and you PLA . Likewise, I have been told my diagnosis most genuinely falls into the category of Motor Neuron Disease. Personally, I have had on exam Upper Motor Neuron Signs and on re-exam, they have disappeared. Regardless,, I have been told I have an untreatable and progressive disease. I am waiting a third opinion here back in Toronto.

All this grim chat aside, this forum has been Godsend. This forum as made me feel a sense of belonging. It has allowed me a space to be myself and the support has been amazing beyond words. Honestly, aside from the group here who have welcomed me I have no one to really talk to about all of this. Not in a million years did I think me, this uber-private person, would be pouring her soul out here. But i learned quickly that this is a group of loving, kind people and we are facing the same struggles -- just some us at different stages.

So (sadly)welcome here. I hope here you find the same understanding, support, and love that I have. Big Hugs. Cee.

 

[strongman]

......ALS is about living, not dying!

I agree ^^^

:arrow: ALS is About Living Some, not dying!