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Corky7

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04/2017
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US
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MA
Hello,
We first notice something was wrong with my dad around Christmas when he started to loose a lot of weight. This progressed with muscle weakness in his neck. He started to have a hard time holding his head up. He finally made an appointment with his primary care doctor. At that appointment his doctor referred him to a neurologist. This took about 6 weeks for this appointed.

By the time he saw the neurologist he was having muscle weakness in his hands and it took a lot out of him just to get to the appointment. The doctor did an EMG and blood tests. The next week we would go back for results. The day we were suppose to go back for the results my dad stopped breathing. He was taken by ambulance to the hospital where they intubated him and was put in ICU.

The doctors at the hospital talked with his neurologist and determined he had CDIP (Chronic Demyelinating Inflammatory Polyneuropathy) not ALS. We were relieved! They started him on a five day treatment of IVIG. They tried taking the tubes out but this did not work and they had to do a tracheotomy. After about three weeks in ICU they sent him to a rehab. He's been in the rehab about two and a half weeks now and they are saying he's not weaning off the tracheotomy so they are thinking he has ALS.

He has an appointment with an ALS clinic on June 23rd. Also, we need to find a long term facility now and we should start thinking about end of life decisions. We should also start a conversation with my dad about wether or not he wants to stay on the trach or not. This is all so overwhelming for my family! He's not even diagnosed yet and they already want us to make these decisions.

My question is can you be at the end of your life before you get diagnosed with ALS. Everything I read says you have about 2 to 5 years after you get diagnosed. He's not paralyzed yet. He can still move his hands and legs. He can get in a chair with some help and sit for a few hours. He can talk/ whisper since he has a trache. Please help. My family and I are at our wits end!
 
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Nikki J

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PALS
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04/2014
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I am very sorry. This is clearly a terrible shock and so many decisions to make.

If your dad is awake, alert and competent he needs to be telling you whether he wants to live with a trach. If he does then the family needs to figure out what support you can give. People do care for their PALS at home on a vent It is a big commitment for everyone but it is done.

You should contact the Massachusetts ALSA and also Compassionate Care in Falmouth. They can offer some advice at least. What clinic is he going to?

Every PALS is different and 2-5 years is a general range. It can be much shorter. Sometimes it is longer. Your dad's breathing muscles were affected very early and badly. Others have strong breathing for a long time but become paralyzed. You don't know yet how quickly your dad will be affected elsewhere

Again really sorry you are in this situation
 

lgelb

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WA
Sorry that your family is facing all this. I'm a little confused, Corky. Why are they assuming he has to go a facility? Trachs can be cared for at home, though he would need someone around all the time. He is not necessarily at the end of his life. If he has ALS, he probably has the kind that starts with breathing problems early. It's not the most common kind, but does happen. If so, he could live for some years, though with gradually decreasing mobility.

Have you talked with your dad about how he wants to live from here on? What is your family situation?

Best,
Laurie
 

Corky7

New member
Joined
Apr 10, 2017
Messages
5
Reason
Loved one DX
Diagnosis
04/2017
Country
US
State
MA
We haven't talked to him yet about ALS. He thinks he hasCDIP since that was what he was diagnosed with a few weeks ago. I guess we will have to start the discussion. He probably could be cared for at home but we are all working. Not sure my mom could retire early. She needs the insurance right now. That may be something we think about. Thanks for your help. I appreciate it.
 

soonerwife

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Joined
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Messages
1,556
Reason
Lost a loved one
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10/2015
Country
US
State
Oklahoma
So sorry to hear about your dad Corky. I am sure all of this is very shocking. You have found a really good place for info and support.

All cases of ALS are different. There are a few different types of ALS depending on where the weakness started, Bulbar Onset, Respiratory Onset and Limb Onset.
 
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