Respiratory compromise while still mobile

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Pillow

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Hello.
My Dad will soon be attending the centre of excellence however the neurology team have asked him a lot of questions about where his symptoms started.
My Dads breathing is very compromised already although he says this started with foot drop. His voice was affected soon after the foot but he can still speak. He has symptoms over a year now. The team have spoken to him and his family about end of life options. He’s been using bipap about 5 months.
He has lost a lot of weight , is still mobile, can eat , drink , dress himself , is still driving etc.
I feel he’s at end stage because of the breathing is this something anyone has experienced?
 

Nikki J

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We have had members in the past who remained mobile to the end. It is a mixed blessing as no one wants to be paralyzed but it is hard to accept when you see your relative so functional.

some clinicians discuss end of life issues earlier than others Do you know his respiratory numbers? Some people live a long time with significant compromise especially with bipap Is he getting feeding tube? I hope you can go to the appointment with him. If covid forbids ask to facetime
 

swalker

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My first symptom was foot drop (right side). Of course, I had no idea it was anything serious at the time.

I was being seen by a rheumatologist for a rheumatological condition and he said that I needed to see a neurologist about the foot drop.

The neurologist found that I was not only weak in that lower leg, but that my right shoulder was also weak. That started my journey to diagnosis.

My first pulmonary function test showed my Forced Vital Capacity (FVC) at about 60%. That was in 2012. I was diagnosed in 2014. Obviously, I have slow progression, so what I am relating might not apply to your dad.

My FVC steadily degraded until it hit 18% in 2017. My FVC has not been tested in the last 3 years, because the doctors said once it hit a critical point, there was no further need to do the tests. The tests were very hard on me.

I have had an Astral 150 ventilator that I use for Non Invasive Ventilation (NIV), essentially as a BiPap, for well over 2 years. It took over a year get the settings right for me.

In my case, the NIV machine reports its settings daily to the respiratory folks. I was told and retold that if I changed the settings myself they would take the NIV machine back. Would they really? I don't know, but did not want to take a chance and did not call their bluff. So, I was at the mercy of the licensed respiratory therapist to make the settings.

Eventually, they allowed me to change the settings under the phone supervision of the respiratory therapist. The only reason they did that was because of COVID (they did not want me exposed to anyone, including the respiratory therapist). Even then, I had to convince them I had a technical background and could understand how to use the user interface of the device (I spent over 30 years working in software development, so I am a bit more familiar with that kind of stuff than many).

I am now at a point where I cannot breathe while supine without NIV. I find the NIV to be of great benefit. It is not a challenge to use it anymore. I actually look forward to when I put it on.

I started using a wheelchair in 2015. I can still stand, transfer, drive, and walk short distances on my own. As I said, I have slow progression, so my path is atypical.

I don't know how helpful any of that will be to you, but I wanted to share the experience of someone who is still mobil and has significantly impaired breathing.
 

Pillow

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Thanks for your replies. My Dad actually passed away suddenly today it was such a shock to us. I will be fundraising for this cause. The route to diagnosis alone is horrendous.
 
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