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I would love to communicate with anyone that has either of these diagnosis. My husband is 51 and has been diagnosed with HDLS, (Hereditary Diffuse Leukoencephalopathy with Axional sephroids) and has had active degeneration of this extremely rare progressive disease, since 2006. Onset of symptoms go back to 2004. He was 46 when things became pronounced.
Lisa
Hello Lisa,
How is your husband's health. Like I mentioned in my earlier mail, what is the difference between ADULT ONSET AUTO SOMAL LEUKODYSTROPHY and HDLS. WHich your husband has.I understand he is bed ridden and I really appreciate your efforts by taking care of him at this situation. I realise it as I am on the other side of the fence, a patient. I realise it becomes very tough on the family and I want to convey you that we the patients really admire and appreciate all the efforts of the family members.
May God provide you the strength and courage to keep going.
Manny
Hi Manny,
I hope you are doing well. My husband is not doing very well as his disease is progressing, and he is beginning to have episodes of renal shutdown. He recovers for a few days, then the problem presents again. Just today we entered into the Hospice program, while he will be staying at home, hospice care will help out a lot with his day to day needs. Thank you for asking about him.
As for the diffrence of AOL and HDLS, one is a leukodystrophy and the other is a leukoencephalopathy. The difference being how the brain responds to the disease, and physiological effects as a result. In AOL, orthostatic hypotension is a feature that is not usually present in HDLS. Aol, is a more rare disease then HDLS, from what I understand. Both are devastating to the patient and the family, both are progressive, and both are degenerative.
I am impressed that you are able to type and use the computer, as my husbands dexterity and ability to do that stopped pretty fast. Just 6 months ago he was able to play his Nintendo DS, doing the brain exercises and do crossword puzzles. He is not able to do either of those now, as well as, hold and use the phone, or the TV remote. He is not able to feed himself, or do any personal care.
This disease process is so unpredictable and there is such little documented information on it's progression. I am keeping a journal and timeline on my husband, so that others at some point my be able to read it and answer the questions that I have, such as, at what point does renal failure present, and how long from there does the end typically come. I realize no one knows this for sure, but I think that having a written record, to refer to, can help someone else down the road, and fill in some of the many blanks in the research of these diseases.
I hope I have answered your questions Manny. May God continue to bless you along the path of your illness.
Lisa
Lisa,
My husband has been dealing with a personality shift since 2004 that we have just found out that it is "Adult Onset Leukodystrophy with Neuroaxonial Spheroids". His is not genetic however. He just turned 30 and I'll be turning 30 tomorrow. My husband is starting to become more and more restless and childlike in many things.
I'd love to stay in touch and get advice and lend a shoulder if you need one!
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