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.
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newly diagnosed teen son with ALS
- By imamom
- Posted August 10, 2007 at 7:21 pm · 30 replies
- In National ALS Advocacy Day
- Shared with the public
30 replies
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- Newest first
- By swhite-geo
- Posted August 11, 2007 at 9:46 am
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Hi Mom, I received your message in the ALS Advocacy daily newsletter. So sorry to hear about your son. I wanted to be sure you know of two resources that have been invaluable to me; they are the Living with ALS Yahoo group, and the www.patientslikeme.com site. I'm normally on patientslikeme.com, in the forum, user name is swhite.geo. God bless!
- By SheilaT
- Posted August 11, 2007 at 11:39 am
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I'm so sorry to hear someone so young having ALS. Sometimes you're speechless because this disease is so bad. I also have a son who is a senior this year and my heart sank when I read this. I'm so sorry..
- By jennyhoff
- Posted August 11, 2007 at 8:36 pm
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I too am so sorry to see this happen to someone so young. It sounds like you are on the right track just by keeping open the lines of communication with your son. My experience so far has been that it is amazing what kind of acceptance and attitude you can create in those around you just by how you deal with it yourself. There really is a lot of positive information out there if you go seek it out. It really isn't all gloom and doom as "they" initially insist that you believe.
One young person that has intrigued me from the beginning of this journey is Eric Oberman. I was in Washington DC in May to meet with Congress, and he was there too. He too was dx when he was a vibrant freshman in college at age 18. I believe that you can search the internet and find out a lot about him. I know that under the ALS National site, you can see a couple of videos where he has met with Congress over the years. It would be awesome if your son could connect with him. He may welcome the communication and the opportunity to help someone else in a situation similar to his own. I only encourage you to gather all the support that you can in your community, such as the ALS Association. I cannot begin to tell you what a difference it makes to have that support. Any support that you can gather from online groups will also be very helpful. Just knowing that I am not alone has given me great strength. I wish you the best, Jenny
- By imamom
- Posted August 12, 2007 at 12:40 am
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Hi!
You are my first responder and I am tearing at responding back. I am so grateful to not feel so alone. And at the same time I cannot believe I am in this situation. Surreal. Thank you for the 2 resources. I love more than less. I am sure I will find them helpful. Thank you again for taking the time to respond. Blessings to you, too!
- By imamom
- Posted August 12, 2007 at 12:42 am
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Thank you, Sheila, for your thoughts. Having a son the same age I'm sure makes your empathy greater. I appreciate your thoughts. Blessings!
- By kaygoslinga
- Posted August 12, 2007 at 7:59 am
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Hi Mom,
I believe we were at the U clinic the same day; I heard you talking a bit, and just had a funny feeling that you were there for that handsome young man with you - And I want you to know that I will be praying for your son and your family every day! Minnesota has tremendous resources at your disposal; the clinic at the Uof M is staffed with such knowledgeable, caring people - that's one of the bright spots on this journey you're traveling. My husband and I attend the support group in St. Cloud, which is wonderful! - But I've heard nothing but good things about the support groups in the Cities. The people around you can be such a blessing!
- Kay from Princeton
- By harvmorgan
- Posted August 12, 2007 at 12:35 pm
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I think my log name will tell you who I am. Even though we have communicated your pain has been in my thoughts every time I received an E mail from ALS MDA and the daily blog we are presently on at this time freinds and faith may be the only thing you can count on. May God bless and watch over you and your handsome son.
- By imamom
- Posted August 12, 2007 at 2:41 pm
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You dear sweet man. Thank you for setting me up with this service. I marvel at your strength and wisdom. I am blessed to be a receipiant of both. I am heading to the cabin with the family. My goal is to soak up the northern air and simple days while I strategize to set up 'routines' that can help kkep me more whole. This summer has been wonderful and so full given the diagnosis. And it is also time to settle in for the long haul. My mindset coincides with school starting in 2 weeks for my son. I want to be present for his senior year and not feel so scattered and flying by the seat of my pants. I will be practicing more intentional prayer, meditation, breathing, exercise, eating and water in order to feel more replenished at days end rather than depleted. Sounds like alot as I type it!! A place to start. Then a special friend over for dinner. That is my now and next!!
- By imamom
- Posted August 12, 2007 at 2:46 pm
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Sheila...Did I also read you have ALS? Blessings to you that you could also share some sympathy with me. Your plate must be so full as it is. I am not sure 'where' your son is at but this is hard to have such limited time with my son while at the same time he just wants to be with friends and not share much in the way of conversation. Developmentally normal but challenging nonetheless. How about for you? I am wondering how these dynamics will change as he gets more disabled. Currenetly he is still able to do all.
- By imamom
- Posted August 12, 2007 at 2:52 pm
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If it was the 19th, that was us. I love my support group here in the cities. It is exciting to hear there is one in St. Cloud too. Awesome to have one closer to home. Thank you for your prayers. I plan on beefing up my prayer style to include others. It is one of the things I want to work on up north. I am a nurse and therefore have VERY high expectations of the medical community. I cannot say enough good about what I have seen so far. My niece's roommate just took a job at MDA/ALS. Very exciting to be connected for us all! The people around me have been such a blessing, including you for responding to my discussion. Thank you for your thoughts!!
- By imamom
- Posted August 12, 2007 at 2:54 pm
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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.
- By kaygoslinga
- Posted October 19, 2008 at 1:25 pm
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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.
- By imamom
- Posted October 19, 2008 at 2:56 pm
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No, sorry. His name is Alex. I will look up the artricle tho'. It sounds interesting.
Lynn
- By swhite-geo
- Posted October 20, 2008 at 10:08 am
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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
- By Tammie1
- Posted January 20, 2009 at 10:41 am
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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
- By safetrek
- Posted January 21, 2009 at 7:40 am
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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
- By imamom
- Posted January 22, 2009 at 7:34 pm
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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!!
- By denisema
- Posted January 23, 2009 at 2:19 pm
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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
- By Sue13
- Posted January 24, 2009 at 2:21 pm
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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.
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