Status
Not open for further replies.

IgorZilio

Active member
Joined
Jan 10, 2017
Messages
51
Reason
PALS
Diagnosis
05/2018
Country
BR
State
RJ
City
Rio de Janeiro
Well, I went 2 weeks ago to see the ALS specialist and he gave me an official ALS diagnosis. It’s 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 can’t 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. I’m scared all the time, the uncertainty of what’s going to stop working next is maddening. I’m 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 “secure” because since that diagnosis it’s been a downward spiral for me, I’m so angry I mean what are the odds of this at my age? I’d give anything for this not to be real, but well… now gonna have to face this disaster as best as I can.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,597
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
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?
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,113
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Hi Igor, I'm so sorry about your diagnosis. I think most of us here can relate to it not seeming real. It’s 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. It’s a moving target, so you’ll constantly be reassessing your abilities. Good luck to you, and feel free to ask questions, rant, and share. We’ll be here for you.
 

whereswaldo

Active member
Joined
Mar 3, 2018
Messages
83
Reason
PALS
Diagnosis
06/2013
Country
US
State
Ca
City
Northern
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
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,950
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
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
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
700
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
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.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
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.
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
180
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
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.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,350
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
I am so sorry you were diagnosed Igor. Please stick with us. We understand.
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
754
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
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.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,137
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
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!

Steve
 

IgorZilio

Active member
Joined
Jan 10, 2017
Messages
51
Reason
PALS
Diagnosis
05/2018
Country
BR
State
RJ
City
Rio de Janeiro
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.
 

IgorZilio

Active member
Joined
Jan 10, 2017
Messages
51
Reason
PALS
Diagnosis
05/2018
Country
BR
State
RJ
City
Rio de Janeiro
Hi Igor, I'm so sorry about your diagnosis. I think most of us here can relate to it not seeming real. It’s 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. It’s a moving target, so you’ll constantly be reassessing your abilities. Good luck to you, and feel free to ask questions, rant, and share. We’ll 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.
 

IgorZilio

Active member
Joined
Jan 10, 2017
Messages
51
Reason
PALS
Diagnosis
05/2018
Country
BR
State
RJ
City
Rio de Janeiro
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.
 

IgorZilio

Active member
Joined
Jan 10, 2017
Messages
51
Reason
PALS
Diagnosis
05/2018
Country
BR
State
RJ
City
Rio de Janeiro
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.
 
Status
Not open for further replies.
Top