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does anyone know about ALS in young men-16 years old HELP

My nephew is 16 years old and has developed problems swallowing. He has had an MRI and other tests which showed that he has a problem with the esophogus. The doctors are all whispering ALS despite being otheriwse healthy. the family is very nervous and will see a neurologist next week. I thought this happened in the 40-70 year old age group. He has no other signs that I know of like muscle weakness, etc.

PLease help with some direction. They live in Salisbury, NC

Thank you Al for your reply. I am not too sure where to post my questions. I've never participated in anything like this before. I've read everything I could find on ALS to try to have a better understanding of what my friend Linda has and is going through with her continuing loss of function. She is completely dependant. She can only move her fingers and her head side to side. She still wants her makeup and hair done every day even though most days she does not go out. I've learned how to feed her through her feeding tube, use the suction machine, put on her bi-pap mask and adjust her body in bed to make her comfortable. She has almost completely lost the ability to speak.

It has been a long four years that I have been with her from the first symptoms through the many doctor visits and finally the awful news that she has ALS. Hospice started coming last week and that is a big help for me. The health aid now gives her a shower, brushes her teeth and gets her dressed three times a week. What a relief for me but she seems to feel not too comfortable with the changes.

Thanks for listening.
Jeanne

Hi rkhny 2004. It is not unheard of to have someone in their teens to have ALS but it is probably 1 in a million odds. It is more prevalent in the older age groups but not unheard of in someone so young. Try not to think the worst until he is seen by the Neurologist. If the Neuro says it might be ALS get a second opinion by a Clinic specializing in ALS.

Posting here is just fine. Linda is lucky to have someone like you. Too many friends abandon us when the going gets tough. It takes a special kind of person to be a caregiver to someone with ALS. Obviously you are a special person. God bless you and may he help you in your caring for Linda. AL.

A new PAL, just diagnosed last month.

Hi everyone,

So nice to find this site. I will need the support in the future.

I seem to have bulbar onset sporadic ALS and further symptoms beyond ALS that await further testing next month.

I am a young woman with a young family. I am the care-giver-type in my family so I'm hoping to stay active for as long as possible.

Weird to just have no later anymore. I'm trying to see as many friends and family as I can while I can still be understood.

In hind sight, what would you all recommend that I do now, while I am able?

Support for Earth Mama

Hi Earth Mama, I'm sorry you are here but, glad to give you some TLC. I've been diag. ALS 3x since April 06, went to Atl. Ga last week. Talked with ALS nurse, She was great and so supportive kind and caring. Dr Hopkins said I had a single ray of hope thats its not ALS. But there is no other explanation for the symptons sooooooo I'll go back Nov 10 To ALS clinic and see Dr. Glass Spec. Oh brother go go go go back and back. :neutral: Earth mama, go enjoy life love the people around you.:wink: Live today for today don't worry about tomorrow. Ask the heavenly father to give you peace, you will notice many of us have that peace. I will pray for you now as I type this. Be kind to yourself and Don't be afraid he will carry you through. Don't be afraid to ask Questions. We are here. You may send me a private message if you like. God Bless Janf

Hi Earth Mama. Has anyone suggested banking your own voice to use on a Dynavox or other speech device when you lose your voice? Welcome and feel free to ask what you need to know. If you use the search feature at the top of the page you can type in key words and get information on topics we've covered before. Take care. AL.

thanks

Hi David and Everyone, thanks to all of you and everything you do to make this place feel like our home. JanF

wanted to say hi to everyone!

Hello,

I'm very happy to have found this forum. My father-in-law was diagnosed with ALS in the Spring/Summer of 2005; he is deteriorating rapidly. I am not his primary caregiver but help out my mother-in-law daily. I have been finding it harder to cope with what is happening to him; it is nice to read about others that are in similiar situations and to see what they have been trying.

It is going to take me a bit to find my way around the site, but from what I have read I think it will be a great tool for me to use.

Thank you for having a forum and making it so welcoming.

Hi Dawn. Welcome to the site. I suppose that is a picture of your little guy with your bio. Sorry you have to be here but glad you found us. Feel free to ask anything you need to know or just tell us how you are doing. We do allow rants here when we are having a bad day. Take care. AL.

Welcome to the forum Dawn, glad you found it. I've only been here a short while myself, but it has helped me beyond belief. Wonderful friendly bunch of people here from all over the place. If you need a shoulder to cry on , there are plenty here, or if you need information just jump right in.

I'm sorry about your father-in-law. You might want to consider printing out some things from here for him to read so he can see he is not alone in this battle.

God Bless
Capt. AL

Hi everyone - my Mom (69) was diagnosed with bulbar ALS in May of this year

Hi Maurie. Welcome but sorry you have to be here. If you have any questions feel free to ask. AL.

Hello, My father was diagnosed with ASL just 2 weeks ago. It is helpful to have the diagnosis to begin to fathom what he and our family may soon be experiencing. At this time, he cannot swalow solid food, only that which is finely blenderized.
His speech is still very good, so he can communicate. He cannot walk easily and has a rolling walker to get around the house. He has extreme kyphosis of the spine and cannot hold his head up, which causes stress and pain in his neck. He was prescribed a headmaster collar which is hard for him to wear because he has no padding left on his chest and it presses on the bones there. We are investigating other braces for his back and neck. Is this a common symptom of ALS? If so, what has been other people's experience with how to effectively support the head? Thanks for any help you can give.

I'm New

:shock: I just got diagnosed two weeks ago. Am feeling overwhelmed - what to do about my job, my kids, my husband, everything. Can't think about much else, not sleeping well then fatigued all day. Having a hard time getting through the days.