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nightwolf_mk

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05/2012
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BR
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Now I have my diagnosis. Doctors are saying it's bulbar type. I've been having many spasms in my face and tongue, some difficulty eating some kinds of food and some problems with my voice. I also have many muscle spasms in many other places throught my body and cramps everywhere. I also have difficulty doing some things with my arms and can't walk for many time. I'm 30 years old and I think I will not live much with the disease. It's progresssing too fast. Doctor said the younger you get it the faster it will be.
Trying to be strong...
 

panguinjen

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I'm sorry! We are here to support you! My husband has bulbar onset as well and no longer speaks, has a gastric tube. Get your tube as soon as you can, it'll keep the weight on which will keep you healthier.

Jen
 

Toto's Dorothy

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Jan 31, 2012
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11/2008
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Emerald
Sorry for your diagnosis. Have you asked about any meds trials in your area? As Jen said, stay 2 steps ahead of the disease. The PEG will help you maintain your weight a lot longer. And you must get it before your breathing becomes an issue. If walking has become a challenge, check to see if you have an ALSA that could loan you equipment while you order yours. Or just use theirs. Here in the U.S., some of us are finding many roadblocks getting our pwc. If possible, I would ask next time you're in clinic (if within a decent time frame) for a prescription for it. Also, if you have foot drop, an AFO will make walking a little safer. I would recommend a walker, but you mentioned your arms growing weaker.

May I ask a personal question? Do you have family? Or someone that will be taking care of you? If so, make sure you get your advanced medical directives in place. Ie vent or no vent, peg or no peg et cetera. You also will need durable power of attorney. I am no longer able to write, so 2 weeks ago I had to go to my bank and explain to them the signatures being used on my account. I, then added 1 daughter to the account so she can have access.

Although you have been here a long time, I would like to welcome you into the family. GOD Bless you on your journey.
 

nightwolf_mk

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Messages
107
Diagnosis
05/2012
Country
BR
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Thanks for the answers. I have a family. I'm not married but I have my parents. I don't know anything about trials around here. I think we don't have things like ALSA or ALS clinics here in Brazil. I can still eat so I don't know if I should ask for a peg right now. I am really sad and it's being hard to accept all of this, at least for now.
Thanks
 
Joined
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mk, so sorry about your diagnosis. Praying God stays by your side, and assist you with this sad journey! I lost my son to Als, it will be 5 yrs this Sunday. He too, departed young, he was only 36 at the time of his death. This is a horrible disease. I didn't know what it was until it hit home. You are in my prayers, I know things don't get better with Als. My son's progression was rapid towards the end. I still miss him. May God bless you.

Irma
 

Grateful

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Uk
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Greater London
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I'm sorry to hear this but there is an ALS society in Brazil; if you search for Brazil ALS it's the first result.

It has all the contact details for you to get in touch with them and they provide a full range of services to people diagnosed with the condition, so it would be a good idea to get the ball rolling with them now.

Good luck!
 

Floyd Parton

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Joined
May 23, 2012
Messages
34
Reason
PALS
Diagnosis
05/2012
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TN
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I am so sorry to hear about your diagnosis. I too was recently diagnosed w/ALS. I have read in rare instances ALS will just so that will be my prayer for you........keep fighting.........cheers........fp
 

nightwolf_mk

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Messages
107
Diagnosis
05/2012
Country
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Floyd, I am sorry about your diagnosis too. It's hard for me to believe that this is happening. Grateful, thanks for the information. Now I've found information about Brazil's ALS society. I think the most difficult part right now is the denial for other people around me and it's hard to stay alone since many people that I know don't care much about my condition or at least they don't show that they are concerned about me. I somehow undertand them since it's hard to see other people suffering, but at the same time It's being hard for me. Personally I think that people should stay more with me now while I still can talk and do many things because soon I will lose this things and moments and I will not be able to stay with then doing the stuff that I am able now.
 

caldona

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390
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PALS
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01/2007
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US
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Ar
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Mtn. Home
I am so sorry to hear that you have this all I can say is start reading you know your not along in this and your right now you could use your friends and family now but you will find new friends. Just a reminder if you get to were you can't speak you can use a cell phone doesn't have to be working as long as it has a sims card you can type out your message if the fingers work.
 

HelenL

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PALS
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MA
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Southborough
you can also bank your voice, I think one of them is called Model Talker... at least a few key phrases like "I love you" ... I just saw a video about ALS the other day, and don't believe that you're going to be quick in progression... According to this specialist, age doesn't determine progression... past progression determines future progression to some point, and you may plateau at a certain point.

Definitely get connected with the ALSA folks, and remember you need to keep LIVING with ALS!
 

Filmmaker

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Joined
Nov 24, 2011
Messages
76
Reason
PALS
Country
CA
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Québec
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Montreal
I too am very sorry about your diagnosis. I am 32 and have been dealing with this horrible als for 4 years although i got my diagnosis much later. Anyway just wanted to tell you that age does not determine progression so take it one day at a time and focus on the things you can do rather on what you can't. I know how hard it is to accept this, I hope some of your best friends will soon realize they need you just as much as you need them!
 

Floyd Parton

Active member
Joined
May 23, 2012
Messages
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PALS
Diagnosis
05/2012
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US
State
TN
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Clarksville
I am praying your ALS will just stop....I have read sometimes ALS will just stop.....that is my prayer for you.....you are so young.....just know you are not alone......there are many traveling with you on this most difficult journey.......please stay in touch......cheers....fp
 

TedH5

Very helpful member
Joined
May 17, 2010
Messages
1,142
Reason
PALS
Diagnosis
08/2010
Country
US
State
GA
City
McDonough
Very sorry for your diagnosis. Please remember there is life after diagnosis. Here you will find many wonderful people here for support answer your questions.

I will say I have never heard that the younger you are the faster the progression, if I were you I would put that out of my mind. It is more important to focus on adjusting to new normals. Your time and energy should be given to your family and friends.

Stay strong and keep the faith.
 

momap53

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Joined
Jul 2, 2011
Messages
1,640
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PALS
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05/2011
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US
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GA
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EGA
So sorry about your diagnosis. It's often difficult for fr]p-[0ends to accept the DX. Some will stand by you others will walk away because they just can not deal with it. Many on the forums have found this to be true. Cherish those that continue to offer you support and just let the others go. You'll find a wealth of info here at the forums and will make many friends to help you along the way. Good luck.
 

rose

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Joined
Mar 29, 2008
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2,879
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DX MND
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7/2008
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US
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Maryland
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I am sorry for your diagnosis. Its unbelievably hard to hear, especially when you're so young. But, I don't think your age itself will be the deciding factor in how fast it progresses. A positive attitude will be one of your best assets, as stress will make things seem worse, even if it doesn't actually speed progression.

Don't let it rob you of being You. As many have said, you may have ALS, but don't let it have you.
 
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