Old 05-13-2018, 03:16 PM #1 (permalink)
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Default Update: ALS diagnosis

Well, I went 2 weeks ago to see the ALS specialist and he gave me an official ALS diagnosis. Itís been really hard to accept/understand this. My whole life is falling apart, I live alone and far from my family, so I decided to go back home to have more support and also because everyone is super worried about me now, my parents are trying to put on a brave face and cheer me up, but I canít imagine what they are going through. The disease seems to be confined to the members now, no bulbar and respiratory alterations yet, but significant weakness of my left arm is already evident. Iím scared all the time, the uncertainty of whatís going to stop working next is maddening. Iím really afraid of falling or something, I spectacularly failed all the balance tests, and that was something I was noticing for a while, losing balance all the time. Just hope that moving and not being alone so much will make me feel more ďsecureĒ because since that diagnosis itís been a downward spiral for me, Iím so angry I mean what are the odds of this at my age? Iíd give anything for this not to be real, but wellÖ now gonna have to face this disaster as best as I can.
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Old 05-13-2018, 04:02 PM #2 (permalink)
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Default Re: Update: ALS diagnosis

Igor,

I'm so very sorry to read that you were diagnosed. I knew you suspected it but actually hearing the words is terrifying. Please make sure you stay connected with us for support.

I lived alone when I was diagnosed, too. I have no close family so a friend and I bought a large condo together. He helps take care of my dog and we split bills.

You have the right to be angry but having family to support you emotionally will make a great difference.

Please be careful not to fall.

Where are you moving?
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Old 05-13-2018, 04:33 PM #3 (permalink)
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Default Re: Update: ALS diagnosis

Hi Igor, I'm so sorry about your diagnosis. I think most of us here can relate to it not seeming real. Itís very hard to make the mental leap from where you are now to accepting the idea of becoming progressively more disabled. Anger is a normal part of this whole process.

It takes a while for things to sink in and to accept this new reality. Family and friends each have to go through their own processing.

My advice would be to find what you can still do and go do it. Itís a moving target, so youíll constantly be reassessing your abilities. Good luck to you, and feel free to ask questions, rant, and share. Weíll be here for you.
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Old 05-13-2018, 05:01 PM #4 (permalink)
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Default Re: Update: ALS diagnosis

Igor,

First don't let any one tell you need accept this disease, coming to terms with what is happening to you. I try to live by the saying "I have ALS, it does not have me."

Moving to be closer to family will be good for support. Now matter how you deal with disease, support from family and friends can make a difference to your mental quality of life.

Which ever way you chose to go, please feel free to ask questions, there is a wealth of knowledge and support to pull from here.

Good luck
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Old 05-13-2018, 11:18 PM #5 (permalink)
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Default Re: Update: ALS diagnosis

Very sorry to hear about your diagnosis, Igor. I am glad that you have family support. It will take your parents time to even pretend to adjust in different respects than you, so hopefully you can all be patient with each other. It helps to talk about what you are feeling from the beginning, so you don't get more distant from each other by avoiding certain topics.

When you feel that you even might fall, is the time to use a walker, so you can avoid falls that would make you worse in a number of ways.

We will support you however we can.

Best,
Laurie
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Old 05-14-2018, 09:28 AM #6 (permalink)
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Default Re: Update: ALS diagnosis

I'm so sorry to hear about your diagnosis Igor. As you said in your post, the uncertainty of what will happen when truly is maddening. That's something that I continue to struggle with too. Hugs.
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Old 05-15-2018, 01:26 AM #7 (permalink)
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Default Re: Update: ALS diagnosis

I'm so very sorry you upgraded to a fully fledged forum member.
Come here often, information is the best armour against the loss of control.
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Old 05-15-2018, 08:58 PM #8 (permalink)
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Default Re: Update: ALS diagnosis

So sorry to hear of your diagnosis. Waldo is right. Do not ever let the disease control you. Come here often to learn. This is a great group to field your questions.
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Old 05-15-2018, 09:12 PM #9 (permalink)
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I am so sorry you were diagnosed Igor. Please stick with us. We understand.
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Old 05-16-2018, 08:59 AM #10 (permalink)
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Default Re: Update: ALS diagnosis

Hi Igor,

I'm so sorry to hear that your diagnosis was made official. Please do not be a stranger on the forum. Please stop by with any questions you may have. There is a lot of support here.

Again, I'm so sorry to hear of an official diagnosis.
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Old 05-16-2018, 04:12 PM #11 (permalink)
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Default Re: Update: ALS diagnosis

Igor, I am really sorry that you were diagnosed. I was hoping it would be something else.

As you probably already know, this is a great place filled with amazingly helpful and compassionate folks. Welcome!

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Old 05-16-2018, 05:42 PM #12 (permalink)
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Default Re: Update: ALS diagnosis

Quote:
Originally Posted by KimT View Post
Igor,

I'm so very sorry to read that you were diagnosed. I knew you suspected it but actually hearing the words is terrifying. Please make sure you stay connected with us for support.

I lived alone when I was diagnosed, too. I have no close family so a friend and I bought a large condo together. He helps take care of my dog and we split bills.

You have the right to be angry but having family to support you emotionally will make a great difference.

Please be careful not to fall.

Where are you moving?
Thank you Kim. Yes, wow, the moment I heard "Unfortunately alternative diagnosis have been thoroughly ruled out, you have ALS" was like a punch in the face. I was completely disoriented after that and I guess still am a little bit.

It was nice that you have a friend like that!

I'm moving to the southernmost state in Brazil, the one that borders Uruguay, Argentina... that's where I'm from, Porto Alegre the name of the city. Luckily there are 2 renowned ALS specialists there, one works in a hospital that has a partnership with Johns Hopkins and a center for neuromuscular diseases so at least good doctors will be available.
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Old 05-16-2018, 05:53 PM #13 (permalink)
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Default Re: Update: ALS diagnosis

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Originally Posted by KarenNWendyn View Post
Hi Igor, I'm so sorry about your diagnosis. I think most of us here can relate to it not seeming real. Itís very hard to make the mental leap from where you are now to accepting the idea of becoming progressively more disabled. Anger is a normal part of this whole process.

It takes a while for things to sink in and to accept this new reality. Family and friends each have to go through their own processing.

My advice would be to find what you can still do and go do it. Itís a moving target, so youíll constantly be reassessing your abilities. Good luck to you, and feel free to ask questions, rant, and share. Weíll be here for you.
Thank you, Karen. I really have been trying to get distracted from all this but right now it's all very confusing and stressful. But it's interesting now to do simple things and see them through a new angle, like eating an ice cream becomes an incredible thing that should be treasured because I no longer know until when I'll be able to do it. Deconstructing life seems to be a good way to deal with its gradual loss.
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Old 05-16-2018, 06:04 PM #14 (permalink)
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Default Re: Update: ALS diagnosis

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Originally Posted by whereswaldo View Post
Igor,

First don't let any one tell you need accept this disease, coming to terms with what is happening to you. I try to live by the saying "I have ALS, it does not have me."

Moving to be closer to family will be good for support. Now matter how you deal with disease, support from family and friends can make a difference to your mental quality of life.

Which ever way you chose to go, please feel free to ask questions, there is a wealth of knowledge and support to pull from here.

Good luck
Thank you! That's my goal, face this thing that feels so consuming but actually not let it consume all of me. What I've realized is that most people really don't know how to deal with the information and just avoid the reality of the thing by saying things like "oh but you're ok now you'll probably be for a long time" but come on... you can never know that and I feel that a big step in accepting this is accepting the future and its limitations, not by trying to ignore it. The key is to not let it dominate the present. But it's been hard to communicate and connect with people lately, just feel like I'm more isolated than ever. Don't know if any of you ever felt like this.
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Old 05-16-2018, 06:20 PM #15 (permalink)
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Default Re: Update: ALS diagnosis

Quote:
Originally Posted by lgelb View Post
Very sorry to hear about your diagnosis, Igor. I am glad that you have family support. It will take your parents time to even pretend to adjust in different respects than you, so hopefully you can all be patient with each other. It helps to talk about what you are feeling from the beginning, so you don't get more distant from each other by avoiding certain topics.

When you feel that you even might fall, is the time to use a walker, so you can avoid falls that would make you worse in a number of ways.

We will support you however we can.

Best,
Laurie
Thank you, Laurie! I've been trying to be as honest as I can with my parents, bad communication would only lead to confusion and clarity right now seems to be crucial.

About the walker, my doctor told me I should be careful and avoid doing things that might make me lose balance but strength in legs seems to be only slightly affected so he thinks that for now, it's safe. Just need to be careful. He wants to see my reaction to Riluzole that I'll probably start taking this week, it can cause some dizziness so extra caution would be needed probably but let's see how it goes.
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