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newly diagnosed teen son with ALS

imamom
0 Recommendations

Hi!
I am the mother of a son who just turned 18 and was diagnosed with ALS 2 months ago. I would love food for thought on facing the disease at this age and stage of life. My son will be a senior in high school and plans on attending a college in the area once he graduates. I am an intensive care nurse and familiar with the medical issues. It is the developmental, psychosocial, and spiritual issues that I feel the least prepared for. My son is aware of the typical ALS path and we are able to talk freely about things. I am just starting this journey so any food for thought will be interesting. No need to hold back. I welcome all. At this point it is just thoughts and others' experiences with the disease. We are just beginning our story with ALS.

Explore topics in this discussion:

Exercise Pain ALS Weakness Meditation Pregnancy Rilutek Stress

30 replies

irishsugah

I would like to encourage you to keep faith in God. I have a son that was diagnosed with this in January and I still believe that where there is life, there's hope. As a mother, it's heartwrenching because it's natural for us to fix things and make them better. Hope, faith and love is the answer.

richie_d

hi 'imamom' & other friends...

FWIW here is a video I shot earlier this year of Michael who's had ALS for about 9 years. I hope you find it encouraging. link:
http://www.vimeo.com/5447787
also note, there are links to other PALS on the scroll menu to the right of the play screen too IF you would like to see some other fighters of ALS.

God bless all of you.
R

rhondape

Lynn,
I'm so glad I was able to give you guys encouragement. If your son or you ever need or want to talk privately about anything, you can email me at
england_rhonda@yahoo.com
Rhonda
p.s. my 9yo son is also named Alex so it is easy to keep you guys in my thoughts and prayers.

luski

hi, my son , Stephen was diagnosed 2 years ago at the age of 24. I am so sorry to hear that your son has this disease. He will be in my thoughts and prayers from now on. Stephen seems to have stabilized although he struggles with walking and his speech is slow and somewhat slurred.his fine motor skills are not good. He is an amazing person. He is my American Idol.

imamom

Rhonda,
You are a beautiful miracle. And your message couldn't have been timed better. The Lord does work in mysterious ways! I accompanied my son to his usual ALS appt on the day you sent your message. We had a lengthy discussion about how unusual my son's case is and at the age of 19, how he should proceed with plans for a full life. It was a turning point to shift our focus of 3-5 years to something longer, all the while agreeing with your aunt that we are all 'dying' from the moment of birth and never really know what time we have. As a mom of a 19 year old it is challenging to give him his wings while at the same time, because of ALS, trying to give him information about life choices that are beyond his natural maturity and life experience at this point. A difficult balance at times. Here is where you come in. Your message said it all. All the items I am trying to bring to his attention given ALS. And boy did it have impact hearing it from someone other than his mom. Plus someone who has ALS in a very similar way he does. Your description of how your ALS has unfolded is the same description I would have given about my son. So I thank you from the deepest places in my soul, especially as a mother, for your message. My son and I laughed about what we learned from your perspective and about how it all applies except for the pregnancy part!! God bless you and your family. What lucky children to have a mother like you. And bless your ALS/life journey. I always say to my son who is desperately trying to apply black and white rules to life, that LIFE IS A MESSY BUSINESS.... WONDERFUL AND FULL.....BUT MESSY! Thank you for sharing so honestly. We have blessed immensely from it.
With gratitude,
Lynn

rhondape

Hi imamom,
I was diagnosed in 2001 with atypical ALS. It has progressed very slowly. Although I was diagnosed in 2001, I had symptoms that started back in 1993 at age of 22. I was in the military and had just gotten out, so I have always thought that is what caused it. Anyway, wanted to write to encourage your son and you. My dr told me that progression is set at the onset of the disease, so if it is going slow, it will stay slow. I am just now having cramps in my legs, although I had twitches in 2001, I still have strength and only little weakness in walking upstairs or long standing or walking. It's the little things that give me most trouble, buttoning clothes, opening jars, lifting, anything to do with arms and hands, but I still manage everything on my own. I had my first child in 2000, another in 2002, another in 2003 and the last one in 2005! I also homeschool. Oddly, when I was pregnant, all symptoms stopped when I was 2 months and came back about 3 weeks after baby was born. Dr's haven't figured that out yet. They say although I have progressed, I haven't from a clinical standpoint, whatever that means. But I'm progressing so slowly that my dr said I will live out my regular life span. My advice would be to just take things one day at a time and thank God for each day you have. I don't know if you are religious, but I and my family are christians, so God is at the center of all of this and has been very merciful to us. There is a medical fact that people with a terminal disease who have a peace and acceptance with their disease, live longer than those who don't. This is very important. Stress of any kind can kill you, but stress from thinking you are going to die(from anything) will do it sooner. I remember when first diagnosed and after having been told I would die within 5 or so years, to being told I would live out my normal life span, I was telling my aunt about it. I was thrilled with the news and I was telling her that I was so glad I wasn't dying. She looked at me for a minute and then said, "You still are, you know." That kind of put it all in perspective. I told myself in the beginning, that any day I could be hit by a bus or die from any number of things so I wasn't going to worry about dying from ALS. The point is to live, fully live. Make plans(be realistic though), have goals, and trust God, and just live, one day at a time. Oh, I would also recommend that anything your son wants to do that he can do, tell him to do it now and enjoy it. There are things I wish I had done more, like bowling. Can't really do that now, at least not well and without pain. I used to play piano very little and wanted to take lessons, but kept putting it off. Well, I can't play now because some of my fingers don't work right and I regret never having taken lessons when I could. These are little things, but you know, sometimes, it is the little things we miss the most. We want to take the kids to disneyworld while I can still enjoy it without much limitations. Our kids are kind of young, but if we wait until they're older, we may not be able to go together as a family. These are just some thoughts from my rambling brain and I didn't mean to write a book, but kids are outside playing before we start school lessons, so I have a minute. I hope some of this helps to encourage you even if just a little. I will keep your son and rest of family in my prayers.
Rhonda

pcormier

My best advice is to join an ALS support group--it means you won't be alone. My second thought is to have a regular routine of massage (really actual stretching). My husband was dianosed two years ago at age 58. I truly believe it is only due to his determination and the massage that he is still able to "walk" with assistance and transfer from chair to chair. Most insurance company's do not cover massage because it does not "improve" the condition. One alternative is to look into a massage school. A friend was in massage school during my husband's first year and used him as a case study--one hour a week for ten weeks. We now privately pay her for two visits a week. She spends an hour and a half each day.
In your son's case he wouldn't be able to receive help from the Veterans Administration but for a veteran the VA's help is unmeasurable.
My husband has taken Rilutek from day one. Does it help? We don't know, but do not dare not to take it.
God Bless You All

greensmile

hi imamom :)
i was saddened to hear your sons diagnosis,but i'm sure you'll succeed as will your son as their is a good future.i have a.l.s. now 28 years and i now have a grandson.we'll pray for your son and you here in the Holy land.never ever give up hope,keep the faith,and keep the smiles happening.
warmest regsrds the green smile -shoshanna :)

joe

Hi Mom,

I too am so sorry to read about your son. I am a 59 year old male living with ALS. I was first told in Dec. of 1995 that I had ALS but it was not confirmed until 2001 at the Cleveland Clinic. I am one of the lucky ones with this disease, as I am still able to walk with a walker and I still work. I can only hope and pray that your son’s is the slow progressing type like mine is.

“Patients like me” is a good web site to read about what progress is being made. Another good site is;

http://client1.sigmachat.com/sc.php?id=144320

This site was designed by a ALS person PALS, and most of the people in the room are either PALS or caregivers CALS. This site is more of a chat room to talk to others with ALS. I have met many wonderful people in this room. It is also a room full of hope as many are people who have ALS for a long time too.

Please tell you son to stay as active as possible, I think it has helped me a great deal. Have him get into a local support group as well and become an advocate for ALS. I have spoken to a group of fourth grades who had just finished studying about Lou Gehrig and I told them how it has effected me and my family life. This May will be my fourth trip to D.C. to gather support from the Congress and Senate for funding for ALS research.

Am I full of false hope; maybe but then hope is only we have. Get your name on the email list of the national ALS support group and they will send you all the latest info on progress that is being made.

The ALS Association [ALSresearchnews@alsa-national.org] and
Mary Wisniewski [MaryWisniewski@comcast.net]

Best of luck to you and your son in your fight against ALS

Joe Hrezo (iceberg)

Tandamay

Lynn send me an email -
I lost eveything about a monthy ago - Had to have my computer cleaned out - the person who did it - I ask him to save my email address but he did not - so I hope you can send my not only yours but Sylvia's and Gretchens also

Linda
lindafgibson@tx.rr.com

Sue13

Hi imamom I rcvd yourmsg through ALS newsletter. I am sorry to hear about your son. I can partly understand your pain but in the same time I feel with what you said that you are full of energy to help your dear one. I am too but husband's aunt she is 62 has been diagnosed with ALS since 3 years nearly now. It is a very slow process too...for now her legs they are at the verge of stop moving. In a months time it could be she won't be able to walk anymore. She is like an aunt to me. What keeps me going is all the research I do on internet and keep trying and trying. A few things that might help alot especially when patient is so young to try a good nutritionist and they will give you best supplements. My aunt is having alot from seaweed, to turmeric from vitamin C high dose to Vitamin E D and B12. They helped her alot believe me. Also weekly physiotherapy and massage will help a real lot. If you know how to give a massage to your son the bond you feel would be awesome. Anyway just a few things I just pray God that you accept the situation it is so difficult definitely I still cry alot after I leave my aunt. Just because I think I am not helping her much but deep down then I realize that I am helping her last time I gave her a massage she told me 'How lovely the touch of your fingers, how relaxing'. And the fact that she is feeling non contagious like....very positive. Anyway good luck and God bless.

denisema

Hi, So sorry about your son, my mother was diagnosed at 67 years old with ALS., She was on a bi-pap for 6 months and then ventilated for 7 years, I just wrote a book about her experiences. One thing I can tell you is to deal with each moment, hour, day at a time, Don't worry to much about tomorrow until you have to. He needs to be surrounded by his family and friends, keep him laughing and give him a lot of love. I found unfortunately that with my mom, a lot of her friends never came around when she got sick and that was of course when she needed them the most. If yoy have any questions along the way maybe I could give you some input since we had seven and a half years experience with caring for my mother. God bless you both I will keep you in my prayers

imamom

So cool to hear you are a father! I know my son hopes to marry and have a family one day. I would be joy filled beyond words for that let alone to have a grandchild. So far thngs are moving VERY SLOWLY. That in and of itself is a miracle to me. Bless you! And good luck with that baby!!

safetrek

I have been living with ALS for 15 years and my wife is pregnant. Tell your son that he can still lead a full life. His progression could be slow or stop. My own experience tells me western doctors are for the most part clueless. I will think of you often

Tammie1

Hi , my name is Tammie and have had als 4 10yrs, It has been hard road only because of the small simply things I couldn't do, the one good thing about him being young is that there is such a thing as a-typical als at least thats what my doctors seem to think I have now hopefully if ur son has 2 have this horrible disease it will cease and not get any worse 4 years 2 come. I'll say a prayer 4 all of u and may god give him the strenght that we all seem 2 b able 2 dig in deep in our souls 2 fight backk and not accept defeat no matter what is happenning

swhite-geo

Oops, it's www.stevewhitenc.com

swhite-geo

Hi Lynn, it's been over a year since Alex was diagnosed...just curious about how he's doing? Stop by my site if you get time, and sign the guestbook if you wish...

All the best,
Steve

imamom

No, sorry. His name is Alex. I will look up the artricle tho'. It sounds interesting.
Lynn

kaygoslinga

Hi Imamom,
I was just wondering if your son's name is Patrick? I thought of him when reading Garrison Keillor's article in the Strib today.... Hope things are going well with your son and all your family.

imamom

Jenny,
I wrote a long reply to your reply but do not see it here on the list. I am running up north for the week but want to reply again as I found your thoughts so helpful. Have a great week and I will return soon.

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