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cmohr

New member
Joined
Dec 20, 2011
Messages
2
Reason
Loved one DX
Diagnosis
08/2011
Country
CA
State
BC
I wanted to write in the forum, as I really appreciated all the information that was passed through the forum, it really helped my dad through his journey with ALS. Unfortunately, I didn’t share much in the forum during his journey as it was such a busy time for me and my family; I had good intentions, but never did. I searched for answers and so wanted to know what the final stages were going to look like for dad and so I want to write in how he lived his journey and how he passed, so that it may help someone else.

My dad was diagnosed with ALS in August of 2011. His first symptoms were fatigue, slurred speech and shortness of breath. By December 2011 he had his PEG procedure done and while dad felt it was a huge step for him and one that broke his heart, it proved to be very useful in him maintaining his weight. He was still eating meals with us, but at least could get additional nutrition as the size of his meals were so small. After some time, his meals got smaller and smaller as his appetite further decreased and he feared choking more. He had abdominal pain and we felt it was due to the different nutritional supplements he was taking (canned food, such as isosource, etc.). My mom purchased a vitamix and began making him a high calorie formula that made him feel a lot better and helped him gain more weight. If anyone is interested, we got the recipe from the ALS Clinic in Edmonton and we’d be happy to share if you want to contact me.
In addition, my dad received the Diaphragm Pacer in February of 2012. I believe this bought him a lot of time with us. When he went for the surgery in Cleveland, the initial tests indicated that he may not have enough viable muscle to have the pacer, however, when they put him under for the procedure and directly stimulated his diaphragm, there was enough muscle and he went through the procedure with no problems. The center in Cleveland, Mary Jo and Dr. Onders were wonderful throughout the journey and didn’t hesitate in sending pacers with different adjustments throughout dad’s illness. I highly recommend the pacer and you will see how much it helped dad have a peaceful passing (at the end of my entry).

In addition, dad also had chelation, naturopathic treatments and a few stem cell treatments. I believe this all helped him, there is no cure, we all know that, but things that made him stronger and bought us more time with him, we are truly thankful for. Dad went to Dr. Castillo’s Clinic in Tijuana and received chelation and also vitamin and nutritional treatments, which after about 10 days of treatments really helped him to feel less fatigued. In addition, Dr. Castillo arranged for stem cell treatments. While I know this is very controversial and others have opinions about it, I don’t want to give false hope to anyone, I just want to share our experience. After these treatments, dad always had some improvement. He always felt better. The first time he was so weak we had to wheel him around in a wheelchair, after the treatments, he was able to go for short walks and raise his arms above his head (was able to wash his hair again). After the next treatment he had improvement in his breathing and again gained strength. These are small improvements, but made a huge difference to his quality of life. I do caution however, that I believe the last treatment my dad had, did more harm that good, only because he was too weak at that point. The treatments gave him hope and kept him looking forward. I believe the previous treatments did delay his progression and reversed some of the progression.

I’ve read some things about morphine on the forum and wanted to give my opinion, which was also my dad’s opinion. He dealt with shortness of breath since the onset of this horrible disease. He began morphine in June of 2012 and we had wished we had started it sooner. It relieved a great deal of anxiety as he no longer felt short of breath.

Dad tried ridulek but stopped after a few months as he didn’t see the benefit.

During the last month, dad declined very quickly. He was still able to use his arms and legs and was able to do his own personal care up until the week before he passed. The last week, he was on the bipap a lot; for the last 2 days he was on it almost 24 hours per day. We didn’t know how much time he had left and found ourselves constantly questioning it. He stopped talking 10 days before as we couldn’t hear him, but we were blessed that he could still write so he wrote to communicate with us. He got very paranoid the last week of his illness and asked for backup generator, back up suctioning machine and back up pacer as he was so scared of suffocating at the end, his biggest fear since the diagnosis.

My dad’s passing was peaceful, thank you God. He woke up his last day and wrote that he loved everyone, individually by name. When we told him his back up equipment would be arriving, he waved as if to say it’s ok. I asked him throughout the day if he was ok, if he was short of breath or in pain and he kept saying no. He slept on and off throughout the day. My brother arrived home from a trip, which as it turned out, he was waiting for. We were all hanging out on the bed in his room watching hockey (our new normal) and he needed changed as he needed complete care at that point. We left the room so my mom could help him. She was helping to clean him up and he was writing something. He then got agitated and appeared like he was short of breath. My mom called on me to give him some morphine as he appeared to be having a break through. When I came into the room and tried to calm him as I was getting his morphine ready, he began grabbing at his diaphragm pacer wires. We told him that if he wanted it off we could help him, he didn’t need to tear out the wires, my mom held up the pacer, he turned it off and his eyes rolled back and he began to slip away, no gasping for air or struggles. We didn’t realize that his pacer was keeping him going. We were all by his side telling him how much we loved him. When we looked down, the last thing he had wrote was “goodbye”. He wasn’t short of breath, he was anxious as he knew what he was going to do.

We feel very blessed that we could afford the treatments and devices that helped keep dad comfortable throughout his journey. In addition to this website and patients like me website, we used ALS Worldwide’s website a lot for information and understanding stem cell treatments; there are so many people out there willing to take advantage of people desperate to find a cure.

I hope this information helps someone. I apologize that I didn’t share before and thank you so much for everyone on this site for sharing with me and my family.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
I am so sorry for your loss--your dad sounds like a fighter and a great guy.

I am glad you shared your story but do not feel bad that you didn't do it sooner. you say you got a lot out of the forum that helped your family and now you have helped others as they face the end also. You are paying it forward...

I hope you and your family find peace and happiness is the near future.

All my best,
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
hmm
I am praying for strength for you and your family. Thank you for your story. God bless.
 

ottawa girl

Very helpful member
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
Dear Cmohr,

I am so sorry for your loss. Your family sounds amazing.

Thank you for sharing the journey.
 

celticgirl

Active member
Joined
Mar 3, 2013
Messages
90
Reason
PALS
Diagnosis
09/2012
Country
UK
State
Lanarkshire
Dear Cmhor, I am so sorry for you and your family's loss,I'm glad you were all with him when he passed and could all say goodbye.Thank you for taking the time to share your journey with all of us,you are all in my thougts, take care,love and hugs, Anne
 

KissJ

Distinguished member
Joined
Jul 6, 2011
Messages
376
Reason
Loved one DX
Diagnosis
05/2011
Country
US
State
Pennsylvania
Yes, this helps to know another PAL experienced a peaceful end. I pray for that for my husband. God bless!
 

Sunnyflmom

Member
Joined
Nov 26, 2012
Messages
24
Reason
PALS
Country
US
State
Fl
Thank you so much for sharing your story. My mom is progressing quite quickly and I wonder every day how much longer she'll be with us. Probably everyone's greatest fear is that passing will be painful or torturous. I pray when God calls her home that it will be peaceful and releasing for her. It's reassuring to hear that it is possible to be that way.
 
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