If any One has Alexander disease as adult

• By Celtic60
• Posted May 13, 2008 at 4:47 pm
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Hi Sarina,
My wife, Patti turned 45 on Friday and was diagnosed with Adult onset Alexanders Disease in March of this year. She her symptoms started in May of 2006.
We were at the ULF Conference last month in DeKalb, IL. Patti met another woman (AxD adult onset) in her 30's. I was great for Patti to actually meet another adult Alexanders patient.
Patti's e-mail is phastings5963@aol.com and she would love to hear from you. You both have much to discuss. Remember, you are not alone.
Take care,
Celtic60
Jack Hastings (Grey haired 48 year old in photo, Patti is the beautiful brunette)

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• By PATTI-JACK
• Posted May 27, 2008 at 11:32 pm
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Sarina,
I tried to send you a reply awhile ago but Jack said I must have done it wrong. Here is what I posted about my experience and I hope it helps. Please feel free to contact me if I can answer any questions you may have. Good luck in your search for a final diagnosis. Be strong and know you are never alone. This community has been a wealth of information and support. Patti
I'm a 44 year old female diagnosed in March 2008.
My symptoms were first noticed in May of 2006 when I was 43 and partaking in a 5 mileCancer walk to support a co-worker. My left leg started to drag and my first thought was MS. After resting for a time I walked back to the train as if nothing ever happened. Over the next few months my symptoms kept changing and I experienced extreme fatigue and various leg spasms and cramping. Headaches and joint pain would come and go. My balance was poor and I often felt as if my walking was staggered. It wasn't until Thanksgiving of 2006 that my fatigue and leg weakness had me slouched over and in such discomfort that I decided it was time to see the doctor as this experience had me scared. In December I saw the neurologist and had an MRI of the brain and spinal cord. Doctors stated that what they saw was something they hadn't seen before and never saw in in any of their radiology books. My MRI was sent to many different doctors and nothing was ever evident. After a long wait in fear of not knowing what it was and feeling progressively worse, In june 2007, I ended up at Mayo clinic in Rochester. I saw 6 neurologists there and came home without any answers. It was 2 days later, July 2nd 2007, that I got a call saying my 21 year old daughter had passed away and they were going to do an autopsy. I had mentioned being at Mayo the previous 2 weeks and the only thing I knew was that I had abnormal findings on my brainstem and spinal core and asked that they keep that in mind during the autopsy. About 2 hours later I received a call from the cornor stating that they found abnormalities on my daughters brain stem also. I had the tissue slides from her autopsy sent to Mayo Clinic and the pathologist confirmed Rosenthal fibers. From there they decided to do genetic testing on me and March 2008 is when I finally was diagnosed with Alexanders disease.

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• By PATTI-JACK
• Posted July 30, 2008 at 2:31 pm
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Sarina,
Did you ever get a diagnosis? I think of you often and really need to connect with other adults with Alexander's disease. I need to know what others are experiencing so I have an idea what to expect in my days ahead. This whole sudden onset is frightening and learning to have to be a person with a disability is a challenge in itself. I pray you got a better diagnosis and hope you are feeling as best as you can. God Bless! hang in there... Patti

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• By jan3
• Posted August 17, 2008 at 8:31 pm
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Hi Sarina,

Our Son had a form of Alexanders. He was 27 when he passed. Jbergma1@sbcglobal.net

He did not have the infantile form

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• By CIDERFOUR
• Posted March 3, 2009 at 6:38 pm
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Hi Patti, I have been living with Alexander's disease for the past 4 years. I am now 59. It has become progressive since my biopsy diagnosis of Rosenthal fibers. So far my experiences have been loss of balance, leg twitches, hand tremors, difficulty swallowing, disorientation, sensitivity to noise, breathing problems, dizziness and light headed. I am often confused about where I am, what I'm doing, and how to do things. It has become a path down an unknown hill with no-one or reference to go by. My neurologist knows as much as I do and seems to have met a dead end as to if these symptoms are due to Alexander's disease or something else. It is horrible to not know what's going to happen next. Hey, I'll be glad to keep in touch with you so we don't have to go down this path alone. Good luck and smile, you are loved!

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• By PATTI-JACK
• Posted August 9, 2009 at 1:52 pm
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Hi, I've been thinking of you and hoping all is going as well as can be expected. Something new is always going on with me and I'm tired of it and complaining about it and accepting it as just another thing I can't do. I try to remember my fortune cookie that said,"Gook thoughts make life better." sometimes it's hard to have good thoughts... but I'm trying... Let me know how you have been doing, we haven't written in awhile and we need to remember we're there for each other. Take Care... Patti

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• By CIDERFOUR
• Posted August 9, 2009 at 2:36 pm
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Hi Patti, there has been a lot of distraction in my life these days! I'm doing ok and trying not to think about my limitations but working around them. Hey, we've only got one life and it is better to live it in the here and now than to let each day pass by thinking about would haves, could haves, and shoud haves. I've had some pretty distressing days where I had to cancel out on meeting with friends, or going out to dinner with my husband, or going to the bridal shop with my daughter. I just seem to get very tired and without energy on days. I simply go take a nap and wake up not feeling any better, but a little more alert.
Yes, my daughter is getting married next weekend, August 15th. She has been engaged for two years and her big moment is days away, it is an evening wedding and I hope I can "hang in there" for the night. There is so much going on at my house now that I don't have time to think about my problems, but they are indeed there and sometimes get in the way. I really feel upset when I can't go places and do things with my daughter in preparation for her big day. She lovingly understands which eases my distress.
Another distraction in my life has been acquiring a couple of sibling kittens. Oh yes, kittens!! My neurologist suggested I get a pet to help distract me and busily help my days go by. At first I was adamant about no pets. We've had a couple of dogs and my daughter has a cat that has been part of our household for a few years, I wasn't interested in that type of distraction in my napping days! My husband surprised me with a couple of eight week old sibling brothers on June 24th, they have truly been the highlight of my days! Pets ARE a wonderful source of distraction. If they are babies, as my 8 week old kittens were, they immediately become part of you heart and soul. These guys are tried and true friends and it is so heartwarming to see how much they care for each other and challenge each other to the punch.
Yes, Patti, they have been quite the distraction!! I have never had cats for a pet, though my daughter has one that I really wasn't interested in. Kittens are cute, cuddly, funny ( I haven't laughed like I do over their antics in many years), and can be a source of companionship. When I sit on the couch and read, one sits by my legs and snoozes while the other one sits on the top of the couch next to me trying hard not to slide down over the couch (too funny!). I'm loved.
A nice part of the kitten thing is that my husband and I have other things to talk about other than what's going on with me. We've finally found a "connecting source".
Patti, if you don't have any pets, get some. I say some because my husband was told he couldn't have just one kitten because they are tried and true brothers and the owner wasn't going to separate them. Hey, one or two it is pretty much the same. Double the fun. Let me know what happens. If you do have pets, you know what I'm saying, or maybe not because they have to be little ones to give the ultimate distraction!!!
Dear friend, take care and know that there are people like me that care for you and wish you well.
Love, Connie
Ciderfour@aol.com

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