ADULT ONSET ALEXANDERS DISEASE

• By CIDERFOUR
• Posted June 24, 2009 at 3:30 pm
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Carole, hi. I'm sorry to know that your 15yr old son has Alexander's disease. As you know, I have the adult form, but my neuro-oncologist informs me that I also have the juvenile form. Apparently, the adult form is very much like the juvenile one. My symptoms vary from day to day and the only thing I know for sure is that my hands don't stop their tremors. Some days I have great difficulty swallowing, other days I have difficulty with my fine motor skills like picking up pencils or holding a fork, sometimes I become disoriented and confused like waking up not knowing where I am or what day it is or who my husband is. Every day is a challenge and a learning experience for me. I have learned that when I have difficulty with swallowing I try not to think about it or panic and not try to swallow until I am completely relaxed. Sometimes that works, sometimes it doesn't. I don't know what your son's symptoms are, but I'm sure he too is trying to adapt to his condition like many young people have the courage to do. Keep a positive attitude, Carole, and tell your son to do the same. Yes, it is difficult, but sometimes it is better not to dwell on your problems as much because they become worse. Think a new day every morning and let it happen, be strong, and ask your higher power to give you the strength to get through the day. I have learned to become a part of everything going on around me, it is a wonderful distraction! Listening to the birds sing, watching tiny animals scamper through my yard, even observing the progress a flower makes as it becomes a beautiful blossom. Enjoy your days and don't make this disease become your major focus in life, because it is what it is. Blessings to you.
Love, Connie

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• By hope4b
• Posted June 25, 2009 at 8:51 am
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Hi carole,
I know your fustration & fear. I love what connie says, that is really good advise. I would like to add, take care of yourself, Louis needs you to be strong. Take time for those bubble baths & listening to your favorite music. Remember you can always come here & chat with some amazing, loving friends.
The heat is bothering Brit much worse this summer & making us prisoners to an air conditioner. I haven't come into contact with anyone else who seems to have this symtom. Is Louis still vomiting as much. Is any meds working? I am hearing that weight loss is an issue with this disease. I'm sure you are already aware of that. Maybe you can add ensure to his diet. I am fortunate we are not having a problem with that as of now.
Know along with God & us you are not alone.
Please take care.
Amy

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• By carolerichard
• Posted June 25, 2009 at 12:02 pm
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Connie thanks for getting back to me.
Louis has been having symptoms for around 3 years or maybe even longer and yet the Drs say its the Adult version that Louis has, they say its milder so i am hoping that they are right,Louis is taking ondansetron ( a chemo drug) for the terrible nausea he had and that works really well.
The swallowing thing worries me very much because i can see him struggling sometimes and he seems to get these coughing fits were he starts to choke.
Do you get those at all ?
Do you think thn that the brain is not sending the correct signals for the swallowing action ? if it stays as it is that wont be too bad but if it worsens that would scare him so much.
He is having alot of stiffness in his back and has just started physio, i am hoping that it is just back ache but am worried that also has something to do with the condition. i want to know that he will stay the same and not get any worse for a long time but no one seems to be able to tell me.
Louis attitude is good and he seems to have come to terms with things pretty much.
Thank you for your kind words and we will try to do as you suggest and take each day as it comes... Early days though
Carole

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• By carolerichard
• Posted June 25, 2009 at 12:20 pm
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Hi Amy
Louis is not vomiting anymore thanks to the medication, He is eating better now after 3 years of not feeling like any food but although he eats he does not seem to put on much weight. I cant understsnd it because he no longer plays all the sport he used to and i was thinking that he would pile it on. His slim frame concerns him more than anything else because people often comment and he takes it to heart . If you know of anything that may help please let me know.

I do try and do a few things for myself but i have this constant anguish that wont go away, I have never heard anything like this illness and all the family have been totally healthy apart from his Grandfather who did have a Brain disorder which they said was not like this one. I am very scared for my son and heartbroken
at the thought of him being very ill .
I know you have gone through a lot Amy with your son and i wonder, will it get any easier ? do you think something will come along to help ? I can find no medications to stop it from growing no one seems to know much at all . Thank you for letting me ask you questions. Carole

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• By carolerichard
• Posted June 25, 2009 at 12:23 pm
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Amy forgot to ask what is ENSURE ,,, is it something to add to food .What does it do ? Thanks

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• By CIDERFOUR
• Posted June 27, 2009 at 9:35 am
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Carole, how are you doing this morning? I'm doing ok just for the moment, and that's it.
My swallowing problems can be a major annoyance, especially when I'm eating with guests. Yes, I do go into a coughing fit, but that is after my food gradually finds its way down. Just tell Louis that he shouldn't panic, that seems to be the key for me. If I just not focus on getting that food down, sort of make a holding game out of it, eventually the signal gets connected and the food goes down. "Holding game" for me is to not try to swallow and still focus on what's going on at the table. It's my private little thing that no one knows about, it helps me get through the moment, and my family doesn't panic. Louis should try to use his sense of humor (even if he doesn't have one) to get him through the tough times. I've done that and it makes life a lot easier, plus it doesn't make my family worry about me as much. I really couldn't find much humor in anything in the past, but lately I try to lighten up. Hey, maybe you should try it, too!! I don't mean acting like a circus clown, but just not taking difficulties seriously. I know, and you know, it wont get better and we'll just have to live with it, but if we can see the humor in small things the big things wont be as difficult. Try it.
I hope this advice works for you, and Louis. Tell him to think "bottoms up" when he has the swallowing problem. I don't know what that will do, but it is silly.
Carole, give Louis a big hug from me and tell him I said he has a life that he should get on with. Blessings to you both.
Love, Connie

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