Sunday, November 19, 2017

Holidays Can Be Rough

Holidays can be rough and painful living with ALS, caring for somone we love with ALS or because we've lost someone due to ALS
taking them from us.






I'd like to see us be there for each other now and help each other through this time rather than wait until Thanksgiving and Christmas are upon us and it bites us in the arse because we're going through it alone and ignored the fact we may have a rough time this year or again.


Dad, Kay and Rivqa

I lost my dad a few years ago and it feels like yesterday. The loss & emptiness without him never goes away.
This year I'm determined in the midst of missing him especially during the holidays to focus on the awesomeness he gave to my life.

Growing up the holidays were unpredictable and never knew when dad would fly off the handle and ruin the holiday.
As a child I don't remember Thanksgiving or Christmas being a happy time of memories.

We 5 kids could dream all we wanted for gifts we thought we'd like but we wouldn't get them. 


Dad was alcoholic and couldn't keep a job so mom had to waitress to bring in the income. 

Dad was abusive to mom and to us sometimes. So life was always full of fear.


This is a picture of a doll like I had and of course don't anymore because she got lost but she was my pride and joy baby doll.
 The one gift I treasured for years.

As I became a teen things worsened and dad did not get better.
Mom and dad divorced and it was still hellish and I was confused a lot.


I got married and had kids of my own and didn't see my dad anymore for lots of years.

I was even in the same town he lived in Arkansas but didn't go see him.

I find out a few years later he'd completely changed, gave his heart to Christ, became a traveling minister and was not the same man anymore.

He moved back to Iowa with his possessive wife and did get to see him some.

He started getting sick and she was ill too I believe. Anyway both were in a care center. I started to visit him, decided I was not going to be kept from my dad.  After my stepmom passed away he went downhill quickly.
I did everything I could to get my kids and grandkids there to see their grandpa.
He made memories those last few months and were there with him every chance we got.

I could be sad about the years lost due to alcoholism and our separation but I'm holding on to how precious he was to me in spite of the hellish years we had.
I still have family who do not forgive him and didn't even go to his funeral to say goodbye. 

You see I didn't have all those warm and fuzzy times like so many did to fall back on for memories yet I cherish the few years we had with each other.
I think about from time to time what we could have had during Christmas if he lived and ALS didn't steal his life.

I think of him sitting around the Christmas tree, having his hot coffee he loved and opening gifts with the kids and grandkids. 

I shared all this to say, hang on with all you got to your loved one if they are still with you, cherish those memories you had and have, build more while they are still here and wrapped them in your heart with love.

If you've lost someone you love due to ALS, all the more reason to keep those memories as the most precious gift you have received from them.

Now go help others get through this time of year and share your story.
Cindy



Monday, August 7, 2017

Good Monday Morning

Good Morning
How was your weekend?
~Cindy~

Monday, June 5, 2017

Run4Buffalo

Event Name: Run the Bases 4 ALS!!
Distances: (run/walk) 5k, 10k, 13.1m, 15m (bike)
Run4Buffalo group 5k to be held on July 2ndDETAILS HERE
The Cause: Amyotrophic lateral sclerosis (ALS)  

ALL Group run registrants and the first 20 virtual runners will receive our Run4Buffalo draw string bag as part of the race swag!
Let us know your prefered color in the customer notes box at checkout! Light blue or white?
Run4Hope promo- Get our Run4Hope medal for only $12 with your Run the Bases 4 ALS registration! 
ALL SALES ARE FINAL!!!
All participants will receive our Baseball themed medal. The medal is 3.5 inches and recognizes baseball great Lou Gehrig who retired from baseball in 1939 due to his ALS diagnosis! The medal features fabric “jersey” material with Lou Gehrig’s number on it!
A Run4Buffalo virtual run/walk event can be completed anytime and anyplace. You can sign up anytime as long as medals are available. Regardless of when the medal is sold, a portion of the proceeds will go to the featured charity of that race. Within 3 to 5 days from purchase, you will receive an email with instructions. We host our events on our Run4Buffalo Facebook page, so please join us there for motivation and support. Connect with us on Twitter and Instagram as well!
All artwork and designs are the property of Run4Buffalo, LLC. Purchasing of the medal does not transfer or confer rights of reproductions. All rights are reserved Run4Buffalo, LLC © 2016-2017. 
 http://run4buffalo.com/mainsite/runs/run-the-bases-4-als/
#Run4Buffalo #ALS #LouGehrigDisease #Event #run

Wednesday, May 31, 2017

Take Time to Explore




3. Take time to explore what works best for you. What types of persons and behaviors do you respond to best? Do you prefer direct communication, do you withdraw, are you sensitive? Does too much information overwhelm you, or does too little heighten anxiety? How do you cope best? Being aware of who you are and what works best for you will help you as you make healthcare decisions, seek out support, and share your experience with family and friends. If it is too uncomfortable for you to explore these things, that’s ok. Ask someone to help you explore how you respond best.



Taken from the University of Michigan
Health System
Comprehensive ALS Clinic
Feel free to visit to learn more below


#ALS  #Explore #Healthcare #Decisions #UnivMichigan
#LearnMore

Wednesday, May 24, 2017

ALS Isn't A Medical Emergency:It's An Emotional Shock





ALS Isn't A Medical Emergency:It's An Emotional Shock 
 
2. "It is normal to feel afraid, uncertain, and at a loss of what to do next. It is a crisis which must be addressed, however try to not feel forced into making rushed decisions.There is time to talk and make decisions. You have been experiencing symptoms that up to this point have not been labeled as ALS. You have now “landed on” ALS. As you move forward, remember that this is your diagnosis, your life, and your timeline when it comes to making decisions regarding your care and living the fullness of your life. Take time to experience all your emotions and allow an adjustment period to this diagnosis and its implications. Life is different now".

I've taken this from University of Michigan. You can read more by following the link below. 
~Cindy~

#ALS #MedicalEmergency #EmotionalShock #UniversityofMichigan #GiveYourselfTime #TakeTime #ExperienceYourEmotions 

Sunday, May 21, 2017

You Are Not ALS: You Are Uniquely You!



So you've been diagnoses with ALS. Now what!

And by the way this is just as important for those of you who have had ALS for awhile. We can be just as likely to give in to the devastation and wanna quit or be extreme negative!

Our humanness kicks in-our mind goes nuts and we start thinking-it's a life sentence, I'm going to die, what's the use, I quit, I wanna die, what about my family, my wife & my kids?

Let's slow down and take a deep breath. 

First of all & my focus today is, ALS does not define the unique person you are!

1. A diagnosis does not define you as a person. Take the opportunity to introduce your healthcare team to the person behind the diagnosis. It is important that they know that there is a “whole” person in front of them with dreams, goals, insights, fears, hopes, questions, plans, and loved ones. Connect on a personal level with your healthcare team. You are a person of many dimensions, one of which is now living with ALS.

Stay tuned for 2.
 
I am expanding from the great information from the University of Michigan Health Care System

Saturday, May 13, 2017

Happy Mother's Day

'Happy Mother's Day' to all you awesome and special moms!
Know your loved and cared about. Whether you have ALS, are a caregiver, family member, friend.......ALS doesn't define who you are!
~Cindy~
 
#MothersDay #ALS 

Monday, May 1, 2017

Happy May Day


Good Morning and welcome May! When I was a kid we made May Baskets from paper cups and pipe cleaners. We put them on friend's doorsteps. Did any of you do this?
I don't have a May Basket for you today but I do share my 'Garden of Hope'! May you cling to HOPE with all you are for an end to ALS.
~Cindy~
 
#ALS #Hope #GardenofHope

Friday, April 28, 2017

ALS is Not Your Story: It's Not Who You Are

ALS may try to rain down on life
Don't let it steal your hope and joy!
ALS is not you!
ALS is not your story

~Cindy~

#ALS #Hope #Joy #NotYourStory #NotWhoYouAre

Friday, April 21, 2017

Dandy Oskey: Inspiration Beyond Despair


Good Evening
I hope and pray your Friday has went well.
I'm still catching up with those I've connected 
with after being sick for awhile.

One of those precious people is Dandy Oskey.
Dandy, inspite of ALS is focused on his faith in Christ, is encouraging,uplifting and a candle in the darkness.

Watch Dandy's video below. May you be encouraged tonight and throughout the coming days.
 
#DandyOskey #ALS #Faith #Encouragement #LightintheDark #Hope #video 

Friday, March 10, 2017

Good Evening: How's Your Friday?




Good Evening
How is everyone doing? 
I'm enjoying my Friday at home. 
What are you doing this evening?

I've been away for quite some time after a serious infection, being misdiagnosed and finally a correct diagnosis and a couple surguries and being hospitalized longer than I cared for. 

I'm more than grateful to be home and on the mend. 

I'd love to hear how your doing and what you've been dealing with. 
#Friday #evening #onthemend