Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
My brother (16yrl old) has Alexander Disease - Juvenile form. Although we know there's no actual treatment our biggest concern at this point is the deterioration of his cognitive functions... it seems day by days is loosing more of his functioning - memory - sense on the conversations, etc.
Did anyone had a similar situation? Any suggestions to try??
Thanks in advance!
Gaby
Hi Gaby,
We have a 19 yr old son (Fraser) who has a leukodystrophy unidentified. His cognitive functions have deteriorated over the years to the point where his speech is now indecipherable. He understands most of what we say, but it takes him time to process. I might have to tell him 2 or 3 times to release the brakes on his wheelchair before he acts on the instruction. So virtually everything is slowing down.
The silver lining with this horrible cloud is that his anger, tears and frustrations have reduced dramatically. It used to be very distressing for all parties when he would shout and scream "WHY, why, why" or "what's happening to me". And we could not give an answer. That stage has passed. So whilst it is v. difficult to see our son deteriorate, it is good to recognise that his distress no longer registers.
Thanks Nolan for your reply and sharing your story - I saw other of your posts and you seem very dedicated to your son (my brother suffers spasticity as well).
When did you son cognifive functions start deteriorating?
The problem with my brother is that he still understand a lot of what is going on around him and he knows he is different and suffers from the rejection of the kids of his age. He also says "he thinks faster than he talks"....
I wish there is something we can offer him now to stop his deterioration - maybe supplements/ something.... that's why I am posting to see if somebody had any tip about it....
I wish you the best for Fraser!
Gaby
You might want to do some research on Chinese Herbs. Alternative medicine.
Hi Gaby,
Sorry to hear that your brother is putting up with rejection as well as all the other stuff. Fraser ahd some taunting too when he was 11 through to about 14. He was never "main stream". Having said that we never thought we had a medical issue until a prolonged seizure episode at the age of 9. We had had him checked for other things, such as learning disabilities, autism, etc all being negative. Now that he is in a more advanced stage and wheelchair bound, people are far more "on side" and peers who might have teased him before will now give him a high five or a "knock" as their way of acknowledging him in a positive way.
For acouple of years at 15 and 16 we had him in a school in Vermont that catered to kids with "Non Verbal learning disoprder" which was the working diagnosis at the time and he coped there well considering his age, the very different climate, (we live in Barbados), the boarding school environment etc.
Since returning to home he has deteriorated a lot. But the journey has been long 10 years so far, and counting. The prognosis is unkown. Without a firm diagnosis the doctors cannot really give a prognosis. So we cannot plan sensibly for our other son, Lucas.
Will Fraser be with us for 2 years or 22 or ???
Fraser can understand much more than he can express, but he would still have a mental age of less than 5.
In the photo I'm Cliff and my wife is Camille.
Add to the discussion