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K5tsPajamas

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Learn about ALS
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Ontario
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Waterloo
In the Fall of 2015 my dad started noticing some weakness and stiffness in his arms. He became more easily fatigue that normal, began feeling like it was taking more and more effort to breath. Being an active person, he particularly concerned and decided to pay a visit to the family doc.

On the first visit, we were told it was just a symptom of aging. My dad was 62 at the time. Now, 62 isn’t the new 30, but it’s also not the new 110, at which point I imagine weakness and stiffness might be relatively common. That ‘diagnosis’ didn’t seem right. SO we pushed, and three appointments later, were able to get the doctor to agree to do some tests.

But before we got in to do the tests, my dad was admitted to the ICU, unresponsive. When we got there, they determined that his lungs were failing and that high CO2 levels pushed him into a coma of sorts. They quickly performed a tracheostomy and hooked him up to life support, while they ran tests for weeks to try to figure out what was going on. He stayed in the ICU until late 2016, when he finally got his diagnosis.

But after all the back and forth, my dad was skeptical and didn’t believe ALS was the correct diagnosis. He fought it until recently; asking them to do more research, more tests and more consultations…He didn’t want to talk about planning or management, he just wanted a cure for whatever it is that he had (not ALS).

More than a year later (2 since the initial symptoms) he’s lost 90% of the mobility in his arms, a significant amount of strength in his legs, neck and core, and he’s tired. He hasn’t stopped fighting, but he has slowed down. At this point, it seems like he’s just trying to stay as positive as possible. He’s turned to God for comfort, and that seems to really help.

He doesn’t like talking about his condition, but occasionally he will give us an update about how he’s feeling physically (i.e. if he’s feeling weaker, stiff, sleepy, etc.).

I always wonder what things might be like, if he was able to talk about his condition more. I feel like I haven’t been able to support him as much as I want to because he’s been in the hospital. I can help him with his hygiene/ grooming. I can help him with his meals, talk to him, pray with…but I’m terrified that I’m letting him down as a daughter.

I got accepted to grad school just before he was diagnosed. So, in an effort to make a different for my dad and for others, I decided to dedicate my research to improving our health care system, and helping people to cope. I’m not sure how much of a difference I will make, but my dad enjoys hearing updates about my research and says he’s happy to know that I’m dedicated and passionate about my research. I think that’s something.

[Sorry for the long winded story].

So, I guess I’m wondering if there are any other daughters, sons, family members out there who feel like their caregiving experiences have been similar? I’ve also posted some information about my research under the ‘research news’ tab, if you or someone you know (with experience in the Canadian health care system) that might want to tell their story.
 
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KimT

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The Beach
I'm a PALS but I cared for my mother and father throughout their terminal illnesses. My father's disease was long and drawn out. He had COPD and my mother didn't drive. They moved to Florida so I could take care of them. My mother died of colon cancer. It was diagnosed at Stage 4 and we both fought hard. Dad had been gone for six years when she got her diagnosis and she had moved back to NY to be with her grandchildren and friends. When she was diagnosed, she moved back and in with me. I took her to the best cancer centers but the prognosis was the same.

First, I know from experience that juggling graduate school, work, and caregiving is an extremely hard thing to do. During my mother's illness, I lost more weight that she did and it wore me down.

Although I don't have experience with the Canadian health care system, I want to commend you for your love and care of your dad. God bless you for coming to this forum and asking for advice. I can tell that your father is very proud of you. Just the fact that you are praying with him means everything to a man of faith. Keep it up!

Would you tell your father that someone in Florida is praying for him? Thanks.

I'm a pretty straight shooter. You are NOT letting your dad down in any way, shape or manner. So please try to erase that thought from your mind and continue to love him the way you are now.
 

Lkaibel

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Joined
May 9, 2016
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Lost a loved one
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06/2016
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MN
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Minneapolis
You sound like a wonderful daughter. You are not letting anyone down.

It sounds like your dad had the rarest onset of all, respiratory? I can imagine how it took him a long time to accept that because for one thing the symptoms are so weird. Most diagnostic journies do not include an ICU visit.

My husband was/is a slow progressor and had a classic limb onset symptom of drop foot. In addition, we live near a major Certified ALS Center in Minnesota. All that meant that in spite of Brian having some unusual symptoms due to coexisting neuropathies (and some unexpected EMG findings not usually seen in ALS) our diagnostic process was short. Just 2.5 months after his visit to a general practitioner, he had a diagnosis after seeing a Podiatrist, an orthopedist, a Neuro muscular specialist and finally the ALS clinic.

So, basically I just wanted to tell you that you are an awesome daughter. Our diagnostic paths were different.
 

Narrowminded

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Joined
Apr 30, 2016
Messages
2,608
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
First of all I think you are a very awesome daughter. My husband, Brian, has ALS. We have a son 30 who is married and our daughter is 23. She just started grad school this year for Physical Therapy. Her path, like yours, was very much influcenced by her dad's condition. He has been trached and vented for 7 years. He's been offically DX since July of 2007. It took us 2.5 years to get there. Mostly because my husband was too stubborn to go to more docs to find out what was up. It took us, a GP, Ortho, 3 neuros and a podiatrist. His started with drop foot.

I know that my Brian is so proud of our daughter, he loves hear about her schooling and praying for her as well. I know your Dad is proud of you too and would want you to continue your education. Please don't think you are letting him down.

Hugs,

Sue
 

K5tsPajamas

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Joined
Nov 30, 2017
Messages
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Learn about ALS
Country
CA
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Ontario
City
Waterloo
First of all I think you are a very awesome daughter. My husband, Brian, has ALS. We have a son 30 who is married and our daughter is 23. She just started grad school this year for Physical Therapy. Her path, like yours, was very much influcenced by her dad's condition. He has been trached and vented for 7 years. He's been offically DX since July of 2007. It took us 2.5 years to get there. Mostly because my husband was too stubborn to go to more docs to find out what was up. It took us, a GP, Ortho, 3 neuros and a podiatrist. His started with drop foot.

I know that my Brian is so proud of our daughter, he loves hear about her schooling and praying for her as well. I know your Dad is proud of you too and would want you to continue your education. Please don't think you are letting him down.

Hugs,

Sue
I teared up a bit reading this. It sounds like we share some similar experiences. Thank you so much for your reply. It's comforting to know that I'm not alone, and that maybe, just maybe, my dad is proud of me, just like you and your husband are proud of your children.
 

K5tsPajamas

New member
Joined
Nov 30, 2017
Messages
9
Reason
Learn about ALS
Country
CA
State
Ontario
City
Waterloo
You sound like a wonderful daughter. You are not letting anyone down.

It sounds like your dad had the rarest onset of all, respiratory? I can imagine how it took him a long time to accept that because for one thing the symptoms are so weird. Most diagnostic journies do not include an ICU visit.

My husband was/is a slow progressor and had a classic limb onset symptom of drop foot. In addition, we live near a major Certified ALS Center in Minnesota. All that meant that in spite of Brian having some unusual symptoms due to coexisting neuropathies (and some unexpected EMG findings not usually seen in ALS) our diagnostic process was short. Just 2.5 months after his visit to a general practitioner, he had a diagnosis after seeing a Podiatrist, an orthopedist, a Neuro muscular specialist and finally the ALS clinic.

So, basically I just wanted to tell you that you are an awesome daughter. Our diagnostic paths were different.
Yeah, I think that's what the doctor has written in his file. I think for empathy sake, he didn't go into to too much detail about what form of ALS he had, he just said his symptoms alight with a diagnosis of ALS, but aren't common. It's really interesting how there are such a variety of ALS experiences. Part of me is really mad about that, because it makes it so much harder to wrap your head around. But, honestly, I just wish ALS didn't exist. Thank you for sharing and for your kind words. Wishing you all the best.
 

K5tsPajamas

New member
Joined
Nov 30, 2017
Messages
9
Reason
Learn about ALS
Country
CA
State
Ontario
City
Waterloo
I'm a PALS but I cared for my mother and father throughout their terminal illnesses. My father's disease was long and drawn out. He had COPD and my mother didn't drive. They moved to Florida so I could take care of them. My mother died of colon cancer. It was diagnosed at Stage 4 and we both fought hard. Dad had been gone for six years when she got her diagnosis and she had moved back to NY to be with her grandchildren and friends. When she was diagnosed, she moved back and in with me. I took her to the best cancer centers but the prognosis was the same.

First, I know from experience that juggling graduate school, work, and caregiving is an extremely hard thing to do. During my mother's illness, I lost more weight that she did and it wore me down.

Although I don't have experience with the Canadian health care system, I want to commend you for your love and care of your dad. God bless you for coming to this forum and asking for advice. I can tell that your father is very proud of you. Just the fact that you are praying with him means everything to a man of faith. Keep it up!

Would you tell your father that someone in Florida is praying for him? Thanks.

I'm a pretty straight shooter. You are NOT letting your dad down in any way, shape or manner. So please try to erase that thought from your mind and continue to love him the way you are now.
Thank you <3 <3 <3 I let him that you are praying for him. He is humbled by your kindness. May God bless you also. I wish I could find the words to tell you how much compassion and care mean to us. Thank you again for sharing your story, I'm so sorry for the struggle and loss you have faced and am praying for you also. Your strength is so very inspiring.
 
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