Old 01-11-2015, 11:42 PM #1 (permalink)
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Default Dad is newly diagnosed

Hey I was just hoping to educate myself a bit because i'm pretty oblivious to this whole thing and to be honest it's scaring the shit out of me. My dad was diagnosed about a month ago now, we were told on Christmas eve when he flew home.

My dad told me he's had a lot of trouble swallowing and the whole thing started in his throat. He described it as choking fits on mucous and phlegm that built up in his throat. He lives in Montana and has since been using a medical marijuanna cream to rub on his neck and he said it clears it right up. The doctors have told him the whole thing appears to be starting in his tongue and throat and hasn't yet had his follow up visit to find out a timeline of what to expect (will be in the next 2 weeks or so).

I'm 23 with a pretty complicated relationship with my dad and i'm trying to figure out what to expect in the coming months. I've done some research online and obviously each case is so unique that i'm hoping to find someone that maybe had a similar beginning to this whole thing. My dads speech has slowed severely since the last time I saw him and he's said that his hand has been giving him problems where he loses control. I don't know the speed of the disease or what to expect the next time I see him.

I spoke to my dad on the phone probably May of 2014 and he sounded completely normal, the next time I spoke to him directly without text or email was August of 2014 and I thought it sounded like he was high or something. His speech was extremely slowed and monotone almost. Hoping just to give you guys an idea of how fast it's gone so far.

The whole thing has been tough for me so far because of how he said it started for him. My dad told me that the first time he felt a certain pain in his arm was when me and him were out in the back yard playing Kan Jam (A local frisbee game) where he threw me the frisbee and grabbed his arm immediately in pain and couldn't play anymore. I remember it happening extremely vividly and he mentioned that it was a kind of pain he's never felt before, he now feels the same pain several times a day.

I know this isn't much to go on, but like I said i'm pretty oblivious to this whole thing. I'm just looking for what to expect from people that have seen or are going through this now. A website that tells me what the symptoms are really aren't doing it for me anymore.
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Old 01-12-2015, 12:52 AM #2 (permalink)
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Default Re: Dad is newly diagnosed

Hi, Tidler,
Welcome to the best worst club and debating society...
First, there's no frisbee guilt, right? ALS shows up whenever it wants. The game didn't speed it up in any way.
We can't tell you what the rate of progression will be, and it's not linear, but from what you've said, it could be fast. Or not. It certainly sounds like bulbar onset, so speech and eating could be the first losses. If he wants to record any special messages to anyone, now would be the time.
It sounds like you don't see each other often, but to lessen the shock when you do see him, and understand better how he is doing, I would start keeping in touch via something like Skype.
Does your Dad live with someone in Montana? He will need help at home. Are you considering moving out there or is he considering moving back there or neither one? It's just helpful to know.
Is he interested in joining the Forum himself? Please let him know that he is welcome.
When he goes to his next visit, it would probably be a good idea for him to discuss the steps for getting BiPAP and a feeding tube. I am guessing he will need both in the coming months. And if you let us know what device(s) he uses for computing, we can recommend apps for him to try to generate speech, and to continue to use the computer, tablet, phone, whatever he wants to use. It's easier to start w/ the apps before he really needs them, just like with any app where there's a learning curve.
At 23, this is a lot for you to process, I know, but your relationship, however complicated, will be the greatest opportunity and tragedy of your life to date. Try to live in the moment, when you are not planning for the future, and to help him however you can, whatever the past. We will be here for you.
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Old 01-12-2015, 03:21 AM #3 (permalink)
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Default Re: Dad is newly diagnosed

Hi Tidler,

I'm so very sorry to be welcoming you here. You will find loads of support and help as you try to work through accepting this diagnosis and helping your dad. I agree, consider encouraging dad to join here so we can support him too!

We just can't tell you what will happen and in what order, and to be honest the doctors at the clinic are very unwise if they attempt to do so. ALS just does it's own thing so differently in each person, even though yes there are many who find their path is much the same, that's only by looking back. None join here and can tell at that point who they will be similar to in progression and the rate of.

I can only tell you that my husband started in the tongue, and then in one arm. He was very rapid progression, and we began to realise this but still had no idea what would come next or when.

There are some others here who started the same way as my husband and have had a much slower progression.

What we can do however, is help you to help your dad, and to allow you to talk about your feelings and walk along with you. You won't be alone if you join in with us here. That was an amazing help for me!
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Old 01-12-2015, 06:18 AM #4 (permalink)
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Default Re: Dad is newly diagnosed

Tidler, I'm sorry to have to welcome you here. How wonderful of you, however, to have sought us out. Whatever the complicated relationship with your father, it's clear that you love him and from here on out that should be all that matters. It's amazing how some things the controlled our lives become unimportant in the face of this journey that you and your dad are starting out on. Our family has become closer, and we now rely on our children for help with things that only a year ago dad was helping them with. From our perspective, they have matured greatly as our needs increase

As you've already read, there is no way to provide an accurate timeline. The best advice I read was to prepare as quickly as possible. Get things into place so that you are not caught in a crisis. If things are done early, then relax and enjoy the time you have together.

We'll be here for you--and would love to welcome your dad also.
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Old 01-17-2015, 12:46 PM #5 (permalink)
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Default Re: Dad is newly diagnosed

Thank you for responding to this and I apologize I haven't come back to answer some of your questions. I appreciate all the kind words from you guys and plan on becoming a regular visitor to this forum. The appointment he has scheduled will be in the next couple of days, after which I plan to tell him about this forum if he has any questions regarding what his doctor told him.

To answer some questions, my dad does currently live with a family in Montana that he initially moved out to do business with and they invited him to their home. He was in the process of taking over their business in Montana as they were getting ready to retire and this obviously threw a wrench in that whole plan. I will be trying to keep in touch as much as possible with him through video messages to get my own idea of what to expect, sounds like that's really the only option anyways.

As for any guilt...I don't feel any responsibility for what has happened or anything like that. I know the disease is rare and random with no real ideas of how it starts, so it's become kind of a mindset that something he did that day may have started the whole progression. Just kind of strange to think about the possibility that I was there when it may have started.

I appreciate everything you guys have said and will point him in this direction if any questions come up. Thank you for everything and I look forward to becoming a part of this little community .
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Old 01-17-2015, 01:13 PM #6 (permalink)
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Default Re: Dad is newly diagnosed

Welcome to Heartbreak Hotel.

If your Dad served in the military, check out the VA stickies. That is most important.

I, too, have bulbar onset, and rub Hemjoba lotion on the back of my neck for jitters. I got a peg tube right after being diagnosed, but didn't use it for four months. Once the VA set me up with feeding through it, I am doing much better. I have regained 12 of the 66 pounds I lost.

Eating and drinking are highly overrated.
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