http://www.aphasia.org/aphasia-resources/primary-progressive-aphasia/ This is my beautiful sister who I am going to stay with in Florida next week. And that beach is one of the beautiful beaches we will be spending time at. This is the sister of mine who shares the same birthday with me too. We were both born on February 25th...me first...and then she was born on that same day 5 years later. We've had a really close relationship through the years, much like "twins" in so many ways. Now she is facing a terrible disease called Primary Progressive Aphasia (info linked above) that is stealing her words and her understanding of them. It has been less than two years since she was diagnosed with this disease and I am horrified at how fast it is progressing. This morning we talked on the phone...and my "twin" could hardly carry on a conversation. Has anyone ever known anyone with this disease?
I've not heard of this before, @Babs Hunt . I'm sorry that your sister is having to go through it! What are the treatment options for her? (I'll probably see the answer when I read the link, but thought I'd ask, too.) I have a dear friend who's a doc at one of the "big" medical centers. Would you like me to ask him about any new med journal articles on this disease or treatments?
No thank you @Mari North I appreciate your offer though. Not many people have heard of this as it is a rare neurological disorder. And there has been no one on either side of our families who we know has dealt with this either. I just was curious if anyone here has known anyone with this.
Not a problem. It's the way I find out about new medical treatments that may be helpful, so thought I'd offer. I sincerely hope there will be something to help her.
@Babs Hunt : Such an affliction is truly unfortunate and defies understanding. Thank you for the link, it helped me to be aware that a small part of the brain affected may allow proper functioning of all the other nervous functions. My Dad was afflicted with a brain disease which started so slowly as to be unnoticed. His gait gradually changed as he took smaller steps. Then speech, and other voluntary functions. Several conflicting diagnoses were opposing to one another. They finally settled on Parkinson's, a fact which seemed uncertain to me, as he was always steady as a rock, no shakiness at all. He got L-Dopa on an experimental basis, it was not yet approved. It made him worse. Years after he died, I read of a neurological disease called Progessive Supranuclear Palsy, PSP, which mimics Parkinson's, and fits my Dad's symptoms. All academic, though. Ever since he died in 1972, I've wondered about genetic predisposition to it and might it affect me. I could not imagine living as he had to. He died at 70, I've beaten that without symptoms, so I am a lucky guy, to say the least. Frank
There are some really strange diseases now days I'm sorry to hear this about your dad @Frank Sanoica and I can see why you might have been concerned for yourself here too. This came out of no where for my sister and there is no one on either side of our families that has gone through anything like this even. The link I shared just really shares a basic explanation of this horrible disease, there are other articles on this disease that say it goes further and basically leaves people "vegetables"...and I can't even imagine that for anyone...much less my beloved sister. When she first shared this with me I thought she probably had experienced a stroke, etc. but that actually would have been good news in this case...as with strokes there is room for improvement...and there is not with PPA. There is no cure and very little that can be done to really change the course of this disease. I absolutely hate that my sister is going through this...but I am so proud of her courage in doing everything she can do to not let this disease take her "life" from her. She has started a FB page on this disease because the ones she found that were already started did not allow God or prayer on their pages...only science. And even though she is losing her conversation ability...she is determined she will not let it "isolate" her, etc. I can't change what is happening to my sister...but our family can walk this season of her life with her and let her know with words and without...that she is not alone.
I agree that there are some strange diseases coming along all the time Babs. I have never heard of the above illness. I just want to say that your sister is lucky to have the love of such a large family. That counts for a lot.
That is awesome that you have a doctor friend who works at one of the large medical centers and can ask about treatments that are mostly unknown to the majority of doctors. Oftentimes, those innovative new treatments can save lives, and I would certainly want to know of ANY possibility if I or a family member had something that was considered to be incurable, even of it was only being tested. I have found that sometimes there are treatments that are only being used by these specialists. I read about the use of DMSO in treatments for preserving hearts and other organs for transplants, and also how it can reverse the effect of a stroke if used right away; yet when I mentioned it to my own doctor, she had never heard of this treatment at all. I have been using DMSO to help my memory for a year or so now, and it seems to be improving, even though I am only able to use it on my skin, and not intraveneously like a medical doctor would do. But when most doctors do not even know about these advanced new treatments, there is no way they can help the patient until it becomes more common knowledge with doctors. Hopefully, there will be some kind of a similar breakthrough with medication or treatment that can also help @Babs Hunt 's sister, and in the meantime, we will be praying for her.
@Mari North Just so you understand that I appreciate your willingness to talk to experts. But this isn't my decision to make and my sister is still coming to terms with this disease. She is "touchy" about others "recommending" or "sharing" info at this time. And this is her decision to make so if she passes this stage and wants more info I will remember your very appreciated offer to help. Thanks.
Yes, it's very beneficial, @Yvonne Smith . He's been sharing medical journal findings and new treatment info for about 18 years now, and it feels good to be on top of things. It's been invaluable when there are things not yet known to patients, and often to local doctors. My doc sometimes asks me what I think about this or that treatment for patients. How wonderful that the DMSO is helping you! And I'm glad to hear that your doctor was receptive to hearing it. Some of them can get rather... uh... we'll say arrogant if a patient knows about a treatment they are not familiar with. WELL! I say that with the lousy healthcare available these days, patients MUST be as highly informed as possible.
Oh sure I understood that it's her decision, @Babs Hunt . I hope they find something to help her. My offer was just to see if there are any murmurings about effective treatments, not to ship your sister to a remote laboratory for testing. Can't say, however, that I understand her being touchy about people sharing info, though... personally I'd want to be as informed as possible so I can give myself the best fighting chance available. Maybe she's not to the point of wanting to try yet.
She's just overwhelmed and has a lot of anxiety and feels more comfortable researching on her own and working with her Doctor, etc. at this point. She's trying...but doesn't want others trying for her yet.