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November 13, 2017 / tgexp

Casey Garrah – Equipment

Thanks to the funds donated to The Gleason Initiative Foundation, Team Gleason was able to assist the Garrah family – here’s what they have to say.

My name is Cathy Garrah, my husband Casey has ALS. We are the Garrah’s. A family of four stricken with ALS in 2011. Casey Garrah, a forty year old in the prime of his life started to slur his speech and have twitching in his bicep. The diagnosis of Bulbar ALS followed very quickly.

Three months earlier in November of 2010, Casey, an account manager for a large bank lost his job due to the economy crash. Casey, a fighter went back to school to further his education and become a mortgage broker. He was about to set out a new career when ALS reared it’s ugly head and began to steal his voice. Casey could not speak clearly. Friends and family thought he was drunk, he was not….This was ALS.

Over the last 6.5 years our family has suffered many losses. In late 2011 (December 12, 2011) we lost our home due to the inability to keep up with mortgage and bills. Our son came home from school for lunch and the bank had put locks on all the doors. We moved in with my parents who were struggling financially and tried to make the best of a bad situation by helping each other. Our children age 16 and 7 years at the time were forced to change schools, they lost friends, their home, some of their belongings and a sense of their security.
Casey’s speech continued to deteriorate. His body fighting him with every step, every move. What used to be a simple task making a pot of mac n cheese for the kids for lunch turned into tears as he just didn’t have the strength to hold the pot to fill it with water. The changes would come every few months. The daunting task of his ever changing world – trying to find drinking cups light enough for him to lift with a handle, cutlery to fit his curling hands and fingers due to muscle loss, slippers that had support and a serious non-slip sole, the list goes on and on.

Words cannot possibly describe the tears and fears of what was happening and the anticipation of when the next loss was coming and what it would be – the biggest when was ALS going to come for him, living in fear of the 2-5 year life expectancy per the medical field (we know better – showed them)!!!

In March of 2013 Casey began to become unsteady on his feet. He began falling.
March 25th in the wee hours of the morning I lost my father suddenly to a pulmonary embolism – we didn’t know… all happened so fast he was gone in less than an hour. That afternoon my mother suffered a heart attack likely due to the shock of my father’s sudden death. While tending to my mother at the hospital Casey fell at home. He banged himself up pretty good. He broke his nose and split his lip wide open. Casey needed a wheelchair, his days of walking were over. A day of huge losses and upset. One of many more to come sadly.

It’s 2014, Casey is now in a wheelchair full time. He can barely eat, his hands no longer work and I am the only one who can understand him. He cannot shower on his own, toilet himself, I am now a mother, wife and full time caregiver to my husband.
Casey received a feeding tube May 2015 which made a world of difference and gave him nutrition that he was seriously lacking. We know it was the right choice for him.

The losses Casey endures are endless. The constant changes can be and are overwhelming. We used to use a stairlift for Casey to transport him up and down the stairs to the shower. This became extremely difficult and dangerous with his body and legs weakening. It would take 7 transfers just to get him downstairs onto the toilet and then into the shower. It would take another 7 more to transfer him back to the main floor. It was just a matter of time before one of us got hurt or both. I recognized the safety issue and contacted our ALS outfit here and an occupational therapist was sent out to help, rather than helping we were told Casey would need to be moved to a facility because our home wasn’t fit/safe for him and we needed to renovate and make an accessible bathroom for Casey on the main floor asap. Devastated, our children devastated, Casey beside himself… We are not ones who ask for help but we had no choice… I took to social media and set up a go fund me account. I needed to save my family, we need to stay together. I asked for help from ALS, we applied for grants we were denied – told Casey didn’t fit their criteria his changes weren’t significant??? WHAT??? He used to walk, he now can’t???

This was our first experience with Team Gleason.
Our friends and family donated, strangers donated we were overwhelmed by the generosity of so many people. We began to have hope that Casey would be able to stay at home. I sought the advice of the occupational therapist and asked for her to put us in contact with renovation companies to have quotes – the quotes were crazy expensive, we were short…but guess what??? Team Gleason – we received a generous donation from Team Gleason. Team Gleason heard our cries of desperation and helped to allow the bathroom renovations to move forward. Casey was able to stay at home, stay clean and stay safe.

It’s 2017, Casey began to struggle with some bowel issues in February which landed him in the hospital with the possibility of a bowel obstruction. Unfortunately, with Casey’s diagnosis if his were to have an obstruction the doctors said that there would be nothing they could do for him – if he had surgery he would need to be put on life support which he likely would not be able to come off of mind you his breathing was ok… they said they would only be able to make him comfortable. Thankfully, we didn’t have to go down that road then.

This past April, Casey once again had some bowel issues – we spoke with the doctor who perscribed meds to help him go – we were concerned about giving the meds in case there was an obstruction – we went to the emergency at the hospital where Casey underwent a CT scan, they laid him flat – something went terribly wrong – he couldn’t breathe – once the scan was done I was let back into the room and pulled my husband out he was pale and grinding his teeth – he had no way of alerting anyone that something was wrong – he had no voice, he was paralysed all from ALS – within the next few days my husband would go into complete respiratory failure – the struggle he went through, the fear of not being able to move, his breath being shallow like drowning….and not being able to let anyone know he was not ok….

Team Gleason was there when my husband suffered complete respiratory failure and came home after a month in CCU/PCU/ICU. He fought to survive. He made it home. His diaphragm gone and on nocturnal bipap. He survived the ever changing staff – some who care, most did not – the hospital staff refused to allow him to get out of bed because of ALS, they didn’t know how. Sadly, Casey’s neck muscles diminished as he lay in bed weakening to such a point that after fighting when I did actually get him out of bed his neck was so severe it tilted to one side he developed positional obstruction of the airways. No one would help, they said this was the disease…On June 26, 2017 our daughter Devin graduated from grade eight. Casey was determined to be there, he was. A picture is worth a thousand words they say. A picture was posted that evening by Casey of myself, our daughter and himself on social media – within a day our phone rang. It was Team Gleason! “What’s going on with Casey’s head?” I explained the situation and the measures we had taken to help him with no avail here at home – ok they said leave it with me. Honestly, not a couple of hours later our phone rang again. It was Team Gleason, Austin from Team Gleason – I was shocked. He said he had learned of Casey and his situation and Team Gleason wanted to help. He proceeded to tell me that that he was going to send out a special headrest with a support strap to hold Casey’s head up properly. I was in disbelief, but he didn’t stop there. Austin asked how Casey was communicating. I explained that we were renting an eyegaze computer but the batteries weren’t charging anymore and we could use the device if it were plugged in all the time which made it difficult because we couldn’t move it with Casey – Team Gleason is going to send him out a new surface pro like the ones Steve has with eyegaze technology and a mount for his wheelchair and a mount for over the bed. At this point I was in tears, it didn’t stop there – Austin then asked how Casey is using the shower I said he has a shower commode from the ALS loan closet but when we received it it was broken, we couldn’t use it in tilt as the straps would let go and break open. He replied, we are sending you a shower commode custom fit to Casey – Are you kidding me? I am now bawling. Austin then asked what Casey was sitting on in his wheelchair – a cushion padded up with towels I replied – he said I am sending you a cushion to, a ROHO, one of Steve’s!
Over the next few days Austin was in contact with us getting all the specs and information and not kidding the equipment started to arrive without delay.

The headrest arrived it was perfect! Absolutely amazing! Casey’s head was now in a position so he could breathe, he could hold his head, he could go outdoors for a walk with his head secured, he went in the van and his head wasn’t bobbling all about and he wasn’t in pain. He even went to Walmart for the first time in months! This headrest not only gave him freedom to be out and about and hold his head without pain but it saved his life as his breathing was compromised.

The computer arrived with the mounts. With lots of help from Austin, Casey was up and running. He now had the freedom to move, go outside with his device in the fresh air and be able to communicate with everyone! He was able to share his feelings, his needs, his wants, his humor!! Simply amazing! He can even change the channels on the tv himself – back in control “hello” can you say, INDEPENDANCE!!! Welcome back you have been missed!

OH to be clean, safe and comfy too. The shower commode chair is the bomb! It’s all spec’d out specially to fit Casey. It has laterals to hold his torso up, it has comfy harnesses to hold him in and keep him safe and it tilts, tilts in space! There is nothing like a shower to make you feel better.

The mount for the over the bed. Wow, you guys know ALS – that’s a fact.
Casey started to become very tired mid July of this year out of nowhere. Casey is on bipap since his mishap back in the spring. He came home with using bipap at night while he was sleeping but with strict instructions that he could not sleep without the bipap on. Sadly, Casey’s heart rate started to increase while being up in his wheelchair. He needed to rest, his breathing was becoming labored despite having bipap on during the day. It was exhausting him (like he was running a marathon) he needed to be in bed. This mount has allowed Casey to be in bed, breath comfortably while on bipap and stay connected with friends and family, alert when he is in need of help or wants something. Without this mount his life would be isolated. He would be staring at four walls and no way of communicating. He has quality of life.

The ROHO! Can you say “we’re gonna pump you up”!!!That’s exactly what Team Gleason has done. They saw our struggle, they saw Casey was falling through the cracks, they saw he was suffering, they saw his will and his fight to survive. They were there in our moments of need and despair, like superheros with the make it right superpowers! Without the love, support and generosity of Team Gleason my husband, my children’s father, a parent’s’ son, a brother and a friend to many would not be here, in his home with us where he belongs. Quite honestly, he might not be here at all….

A thank you doesn’t seem enough to express the difference Team Gleason has made in our lives. It means the world to me and our family to know that there are people out there, an organization who works their butts off to help those fighting ALS. They gave my family a reason to believe when times got tough and there seemed to be no way to be able to scream at the top of our lungs “NO WHITE FLAGS”
A reason to believe, a reason to fight, a feeling we are not alone – people care, Team Gleason cares.


One Comment

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  1. Kathryn Begnaud / Mar 11 2018 1:41 pm

    Wow. I too have ALS, Bulbar onset. Early stages but almost all speech gone. I am thinking of your family today.

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