Monday, May 04, 2009

Live From Limbo

I write this from a sort of suspended animation, as we await results from some of the many diagnostic tests Alex has been put through in the last few days. It's an odd sort of anticipation. We're afraid they'll find something, and more afraid that they won't.

I haven't shared, very publicly, what's been going on with Alex, but I think the time has come that explanations will be required most everywhere, and also, there's the chance that, of you people out there reading this, someone might have gone through something similar. There may be insights to share, and God knows we could use some, because we, and our doctors, are so far stumped.

Something bad is happening--seems to be happening with his brain--and that's about all we know for sure. It does not appear to be related to his bipolar disorder, nor do that disease's attendant medications seem to be implicated. The only way I can describe it to anyone who hasn't experienced it firsthand is that he seems to be... degenerating, somehow. I seem to be losing a little bit more of him every day. I can only tell you what it looks like.

His short-term memory is severely compromised. He can't recall things that happened yesterday, or even earlier in the same day, sometimes. His ability to reference any sort of timeline is for the most part gone. Things that happened last year, he recalls as having taken place "a couple of weeks ago," and likewise, something that happened a couple of weeks ago could, to him, seem to be six months in the past.

He is confused a lot of the time, and understandably, is quickly frustrated by even the mundane. He seems to have particular trouble with communication--with getting the thoughts in his head into words and phrases. There is still a quick, brilliant person trapped inside there, and he can't explain what he's thinking...and occasionally doesn't realize right away that he's not making sense.

My athletic, strong, quick-reflexed husband, he of the near-supernatural hand/eye coordination, has become slow, weak, and clumsy. He's lost so much weight that he's now well under his high school weight--11 pounds in the last week. His gait is a slow, shuffling/shambling sort of walk, with arms outspread on either side, as if walking a tightrope. Frequently, one hand or the other will pinwheel briefly in the air, looking for balance. Sometimes I need to help him walk from one room to another, and getting in and out of the truck is a challenge. Needless to say, he can't drive a car.

His speech is slurred, and often confused. I've seen other people--shopkeepers, parents at Bella's softball games--dart glances at me as if to check and see if I realize that there's something wrong here. I have no doubt that sometimes, strangers assume that he's been drinking. If you didn't know him, and you observed him in conversation, you would most likely think him intoxicated.

If you didn't know him, and you observed him walking, his gait slow, with painfully short, shuffling strides, arms out stiffly at his sides, slightly bent over, you would most likely think him very old.

Our neurologist has ruled out a couple of the scariest possibilities, like early-onset Alzheimer's (too young) and Huntington's Disease (no involuntary movements), but beyond that, she's kind of baffled. We've gone in for an EEG, extensive bloodwork, 24-hour urinalysis for heavy metals and other things, and today, an MRI of his brain.

And so, now, we wait. And for Alex, the waiting is torture, as is being prisoner to a traitor body and brain. I try to anticipate his needs, to understand what he wants to say so he doesn't have to go through the agony of trying to get it out, to remember to take care of things he would normally take care of himself. I try to be patient, and I am not always successful, to my lasting shame. Often, feeling overwhelmed with all that must be attended to around here, I find myself "stuck" behind him in a narrow space in the house, trying to get by him as he makes his painfully slow way around, and I have heard myself snapping, "MOVE." And then I see his shoulders sink, and my heart follows. I apologize a lot. He apologizes more, and his apologies are for things that in no way require apologies, which breaks my heart more. "I'm sorry I'm like this." "I'm sorry you're stuck with me."

Worst of all are the times when he just looks at me with all the sadness in the world in his eyes, and says, weakly, "I don't want this."

So, I love him. I give him everything of myself that I can, and I help Bella to be understanding and kind. I do what I can. I cook. I grow things. I pay bills. I plan for a future in which I'm the sole income-generator in this household, and I look for ways to supplement that income if I can. I don't think about how I will take care of him and earn a living, should he not recover from this state. I refinance the house, and trim the budget. I am rarely doing all the right things, and am never perfect, even for a minute. Often, I'm not even close.

I pray. And I hold him at night, which is when he seems the most lost and scared.



..."and I scream, 'If you want him, you're going to have to fight ME.' "

101 comments:

  1. I love you, Belinda. And reading this made me cry, too. I wish I had more. If you can ever think of anything I can do, you tell me. It would be my privilege.

    ReplyDelete
  2. Belinda, I was just thinking about you today. Your post gave me chills and tears, and I just wish there was something I could do. Absent, that, I'll just pray and do my best to send love and light your way. ((hugs))

    ReplyDelete
  3. Hi Belinda, We connected a few months ago on Twitter over family bipolar issues. I am saddened about this turn of events and my thoughts and good wishes are with you all. You are hard on yourself, and in such a tough position. It's o.k. not to be superwoman in circumstances that could break anyone.

    ReplyDelete
  4. I knew some of this, but not all the details. It's much worse than what I did know. I'm so sorry. :( I hope and pray they find out what the heck it is!!

    Have they ruled out some sort of stroke?

    ReplyDelete
  5. Could this be a form of Parkinson disease? It sounds similar to our friend who was just diagnosed with a form of Parkinson. He shuffles, too hard work for him to take normal steps...he has to concentrate to hard to do it. He is off balance all the time. Cannot swing his leg up on his motorcycle anymore and would lose his balance if he tried. He cannot turn to the right or left. When he shuffles he pitches forward as he does so leaning into the direction he is moving and he loses his balance easily. He is bent over walking.

    I never knew until a week ago when Ken was diagnosed that there are various forms of Parkinson disease.

    ReplyDelete
  6. One of the many things they'll be looking for are signs of a stroke. It wouldn't surprise me at this point. Something has to be very, very wrong.

    ReplyDelete
  7. I hurt for you both - I cannot imagine what you're going through. I will keep you in my prayers.

    ReplyDelete
  8. Belinda, I'm so thinking of you and feeling such a sense of unity with you. It's such a sad lonely place to be when there are no answers. I think that's the hardest part.

    Although I have no idea what I can do to help, please know that my mind still works most of the time for now & I'm at least good for feedback & bouncing ideas off. Plus I'd be glad to give suggestions on any entrepreneurial thoughts you have.

    Dealing w/ a family in which one member is ill & the family has to adapt - well that I'd like to offer to help with - except that you're doing a whole lot better adapting than my family is. You're showing insights and are so sensitive to Alex. Bravo - and please know I'm hinking about you.

    ReplyDelete
  9. How utterly terrifying for both of you...
    I cannot imagine...

    ReplyDelete
  10. I don't believe that Parkinson's would account for the cognitive issues, but I'll keep it in mind to ask.

    ReplyDelete
  11. I can only imagine how incredibly difficult this is for you and your husband. I'm holding good thoughts for you.

    ReplyDelete
  12. I'm weeping for you, Belinda, for all of you. This is so heartbreaking. So much worse than I even imagined.

    It sounds incredibly similar to my father after his first, unknown stroke. None of us even knew he'd had a stroke until he began having trouble with speech and balance. He'd say completely nonsensical words and not even realize it. He had many inexplicable falls. And he'd forget where he was, or who he was talking to. The workup found evidence of a stroke. He was 78 years old, though.

    Alex isn't taking Lipitor (or any other statins) for his cholesterol, is he?

    ReplyDelete
  13. No answers, just wanted to offer kind words and thoughts sent your way.

    ReplyDelete
  14. Oh, Belinda. I'm so sorry that you're losing him this way. It must be torture. I hope you find something soon so he can treatment and become your Alex again.

    ReplyDelete
  15. I don't know what to say......Bless your heart and God bless you, Alex and Bella. I hope the poodles are working their magic and bring you some comfort and laughter during your day.

    All of your are in my heart and prayers.

    ReplyDelete
  16. Belinda, I don't know what to say....Bless your heart and God bless you, Alex and Bella. I hope the poodles are working their magic and bringing you some comfort and laughter during your day.

    All of you are in my heart and prayers.

    ReplyDelete
  17. Alex IS, indeed, taking Lipitor. What's the link?

    ReplyDelete
  18. I am so sorry. How painful this must be for you. I had a child in March 1995. He died in February 1996 of a degenerative brain disease that is actually an error in his DNA. I watched him degenerate for five months. Tough. It was so tough.

    Have they tested for MS? That might be a stupid question and I'm sorry if it is. Anything involving the brain is scary.

    I will add you to my prayers. Best wishes.

    aka Janice NW

    ReplyDelete
  19. MS is also on the list of things currently being screened for right now.

    ReplyDelete
  20. You know you and your family are on my mind and in my prayers.

    Chin up. **HUG**

    ReplyDelete
  21. Waiting sucks, doesn't it? I know it's hard but try to hold on to hope and realize many diseases or strokes have treatment options.

    I'm in nursing school right now. I have been astonished by some of the recoveries I have seen.

    HUGS.

    ReplyDelete
  22. There are a number of lawsuits against the makers of Lipitor for cognitive impairment. I've read that the longer you're on it, and the higher the dose, the greater the damage. The trouble is, most doctors scoff at the evidence because Lipitor is so effective at lowering cholesterol.

    I encourage you to do some online research. Start here: http://www.spacedoc.net/lipitor.htm

    ReplyDelete
  23. Have they mentioned Coeliac Disease?

    http://en.wikipedia.org/wiki/Coeliac_disease

    My friend Tracy's dad seemingly came down with it in his sixties, and there was about a year and a half when he lost huge amounts of weight, and appeared to be going insane. It's a gluten intolerance, and it keeps your body from absorbing nutrients of any kind, which basically means you're walking around starving to death -- clearly this affects your brain, what with its need for nutrients and all. I fervently hope it's something like that, because the good news is that all you have to do to treat it is cut gluten from your diet.

    God, this is awful. I hope for the best.

    ReplyDelete
  24. I am so, so, so sorry to hear this, Belinda. Don't forget to take care of yourself and ask for help when you need it. That includes, if necessary, respite care. Please keep us posted. I'm sending you big hugs and hoping it's something easily curable.

    ReplyDelete
  25. I'm so sorry. You must feel terrified right now. I hope you find the answers you seek. *love*

    ReplyDelete
  26. Dear Universe,

    2009 is supposed to be the year when things start to get better. It's May now, so get to it already. Help fix this man and give this family some good times, enough's enough now. Don't make me bust out with the ghetto threats and all.

    Sincerely,
    Me

    ReplyDelete
  27. Belinda, your post made me cry as well. You are doing so well with all of this unknown, under all this pressure. You are an amazing woman.

    I am so glad you shared more details because reading other commenter's ideas gives me a feeling of hope for Alex; it sounds like there are many possible things they could test for, and I so hope that they find the cause very soon, and start treating him and he starts to improve quickly.

    My love to you and Alex and Bella, and as others have said, please let me know if there is something I can do for you/your family.

    ReplyDelete
  28. oh, belinda! what terrible news. first, thank you for posting about this -- of course your blog friends are worried about Alex, too. your honesty and insight are inspiring. and second, i don't think even God expects sainthood in times of trial. i know you are doing the very best you can at a terrible time. it's OK to be overwhelmed some times.

    like your other commenters, i will keep you all in my prayers until you tell me you don't need them anymore. i'm praying for Alex's health, of course, but also for you and for Bella, that you might be given courage and patience in the face of such an impossible thing.

    please keep us posted.

    ReplyDelete
  29. Belinda, I am keeping you all in my prayers and a special prayer for Alex that they find what is going and and he recovers fully. I didn't realize that extent of what was happening, but knew it wasn't good from FB updates.

    ReplyDelete
  30. Oh sweetie. I knew it was bad, but had no idea how bad. I'm so, so sorry. Praying for all of you.

    And don't you dare apologize. You are his champion, every inch, and that doesn't mean you have to be a saint as well. You're allowed a human moment now and then, girly. He knows. It's okay. *hugs*

    ReplyDelete
  31. I am in tears reading this because I can feel your pain and the frustration of not knowing what it is you're up against. Please, please, please know that those of here in your little blog community are here for you...whatever and whenever you need.

    You and your family are in my prayers.

    -Debra

    ReplyDelete
  32. Belinda, so frightened for you and Alex. Wishing him well, and wishing you strength.

    ReplyDelete
  33. Belinda, I just had an odd moment. Sitting here reading the replies and boom....a disease popped into my head. It is one I know nothing about and I can't even say why it came to my mind, other than maybe God put it there. I may have typed on it once in my 18 years doing medical transcription, that is why it is so odd that it even came to me.

    But, Huntington disease popped into my head and I knew that it was something more than that, that I was trying to think of. I typed in Huntington and actually came up with Huntington Chorea disease and feel that is what I was trying to get out of my brain.

    http://www.essortment.com/all/whatishuntingt_rctd.htm

    http://www.mayoclinic.com/health/huntingtons-disease/ds00401

    If it turns out to be this....all I can say is that I truly believe God planted that word in my brain because I do not recall weird stuff that I might have simply typed on one time in my life!

    Reading the description briefly, it does seem to fit.
    http://www.mayoclinic.com/health/huntingtons-disease/ds00401

    Hugs to you lady. Hang in there and may God give you strength and a spirit peace through this time of your life. May He shine blessings upon you financially.

    You are so loved and supported by so many.

    Continuing to lift you in prayer.

    ReplyDelete
  34. Belinda, my heart is simply broken for you. You, your sweet husband and beautiful girl are in my prayers.

    ReplyDelete
  35. Sending ALL my love to you guys.

    ReplyDelete
  36. I don't know what it could be, but I will tell you that some of what you said sounds eerily similar to my mother and her MS. When the doctors finally took her little "symptoms" like memory and speech issues seriously, she woke up paralyzed on her left side. We went through 2 years of diagnostic stupidity until they were finally able to say MS. But MS looks like so many things, and so many things look like MS, so I'm not saying that is what this is - and I'm certain your doctors are looking into that (like looking for lesions on the MRI)

    I hope that whatever this is, you figure it out and then nail it to the wall and into submission. I'm so sorry you're going through this.

    ReplyDelete
  37. Belinda,

    Just to add to this - I'm so sorry that has to be beyond incredibly scarey for you both. The only thing that comes to mind for me is ALS as I had a friend pass of this not too long ago. It was VERY evasive to diagnose. But shuffling gait and communication problems sound scarily familiar.

    Hope you have answers soon. You can fight a known foe so much better than the unknown.

    Hugs and prayers from here.

    Linda Gower

    ReplyDelete
  38. Oh dear, Dear Ones. I am so very, very sorry you are going through this. Please be gentle on yourself, Belinda. You are being Superwoman and even though you are capable and no doubt being far more graceful than you credit yourself with, it still sucks. S-U-C-K-S. I pray for some quick diagnostic and treatment options to get you out of those dark woods. Hugs to you all.

    ReplyDelete
  39. You and your family are in my thoughts - thank you for sharing and please let us know if there is anything at all that we in cyberspace can do to help! Sorry I have no suggestions but I'm hoping the tests point to something conclusive and treatable.

    ReplyDelete
  40. I'm praying for all of you. I hate that we aren't closer so I could actually be there to help you with all that you have on your plate. If there is anything I can do from afar besides pray, please let me know. Love and Hugs to all of you!

    ReplyDelete
  41. thinking of you and alex, belinda. big hugs to you.
    -- amy

    ReplyDelete
  42. Oh honey. I'm so, so, so sorry that you and Alex and Bella are going through this. I wish I had answers, but I do have prayers.

    ReplyDelete
  43. This comment has been removed by the author.

    ReplyDelete
  44. I'm so sorry to hear what is going on with your husband. My thoughts and prayers are with your family

    Some of the things I can come up due to having a parent with some of the issues she was checked for

    Parkinsons as someone mentioned
    Brain tumor
    Progressive Supranuclear Palsy
    Lou Gehrigs Disease
    MS

    ReplyDelete
  45. So sorry you are going thru this. Be mindful and take it one day at a time. SOMEHOW things will work out for you. I am so heartbroken myself about a teenage daughter we are losing to mental illness and serious substance abuse. I fear she will not live and every shred of hope fades away as she gats worse... she was brilliant and beautiful and my whole life. BUT others have walked these painful paths and survived. I have sought help from buddhism, yoga, and nature. Sometimes all I do is put one foot in front of the other. Do not run form your pain. It is transformative.I love this book " radical acceptance" and the website of the washington insight meditation society.. streaming audio meditation by Tara Brach who also wrote the book. We need to experience this pain and suffering to move thru it and then you can help him. You have a daughter who needs you. You also have family who will help you if worse comes to worse. It helps also one day to be of help to others. Live ONLY this moment. I try the times I don't know if my daughter will survive. Peace to you. You are a radiant being and will move forward.

    ReplyDelete
  46. I'm thinking of you and your family. I'll keep you in my prayers. I hope there is a way out for Alex, and I hope that all of you get the support you need. Here's to good news in May.

    ReplyDelete
  47. I am so sorry that this is so terribly difficult for all of you. It looks like your docs are covering all the bases with the tests and such - have they considered changing or stopping his medications? Depression in itself can cause dementia-like symptoms and sometimes the medications exacerbate it. Because the brain changes (and the medications don't), it could be a new reaction to meds he's had for a long time. I also wouldn't rule out some of the dietary change stuff someone above suggested. I know it sounds strange, but sometimes a nutritional change (eliminating gluten, etc) can have a way to jump-start change. I'm sure your docs have checked this too, but vitamin deficiencies can cause similiar symptoms. Lack of B1, B12, or thiamine can cause the same type of thing. So it could possibly be a nutritional absorption thing.

    In the meantime, let me know if there are any medical supplies that you need. My mom's company is a supplier for those types of things (everything from wound care to hospital beds to lifts to potty chairs) and has all kinds of mobility aids and stuff that might help him out a bit. Sometimes something simple like a shower chair can help a person feel like they're getting their autonomy back and it can really improve their outlook.

    xoxo - mia

    ReplyDelete
  48. I just recently started reading your blog, I can't remember who 'pointed' me to you, but I have enjoyed it. I'm so sorry you're having to go through this tough time with your husband... and for him to have to go through this must be so hard for him. I hope you're able to find out what it is, as not knowing seems harder than knowing (I think...) You're doing a great job, keeping things together.

    ReplyDelete
  49. This post brought me to tears. Your family is in my thoughts.

    ReplyDelete
  50. Oh Belinda (and Alexa, Bella & various animals), I'm so sorry. Hugs.

    ReplyDelete
  51. Belinda, you're all in my thoughts. I hope that the news comes quick and the healing quicker. Whatever you're doing is just right, I swear. Your love pours through this post.

    ReplyDelete
  52. One of my first thoughts reading this was also celiac disease, but only because my son has it, so it is on my mind a lot. It can hit very suddenly and, as another poster mentioned, it is because your brain (not to mention the rest of your body) is starving. The other thought I have is some sort of poison; I'm glad he's getting screened for heavy metals, but since none of you seem to be suffering the same symptoms I don't know what else to suggest. The though of poisoning of some kind is what really struck me though. I'll keep you all in my prayers.

    ReplyDelete
  53. I'm so sorry to hear of this Belinda. I have no suggestions, but I see there have been many offered, I hope it helps. Perhaps its a combination of more than one condition. Lupus is another condition that is hard to diagnose....

    I am so in awe of you. You are so brave and strong, do not feel bad when the stress gets to you, those who love you understand. I'm hoping, along with all of us, for a diagnosis soon. Hugs to you all

    ReplyDelete
  54. So sorry to hear what your family is going through! Praying that there is a breakthrough.

    ReplyDelete
  55. So what can I do?

    Is Alex up to listening to music? If that would be a comfort, I'll gladly burn him one or make him one on Grooveshark, whatever way works best for him.

    Do you need books to read? Or could you use a mix? Anything the munchkin needs?

    I can't fix your core problem, I don't even have any suggestions since this is WAY out of my area of knowledge, but maybe I can help ease the time while you wait. So if it would help put me to work, babe...if you don't have my email address, I'll dig up yours.

    ReplyDelete
  56. Belinda - I am so sorry to hear about this. Are they sure it may not be a rxn to meds from long-term use? My thoughts are with you all - Rita

    ReplyDelete
  57. Belinda,
    We have had a lot in common over time...the mental health issues, chickens, and now this. My husband was diagnosed with cerebral atrophy a few years ago, and while the degeneration has been slow, it is still THERE. I know where you are and am praying for you and your family.

    ReplyDelete
  58. I just started reading you a few days ago via Jane from Jane's Insane. I am so heartbroken for you both. I pray that you will find out what is going on and that he will make a strong comeback. Bless you both and hang in there.

    ReplyDelete
  59. Aw, Belinda. I have no idea what to say. I'm so sorry. For Alex, you and Bella. If there is anything (I mean anything) I can do, please let me know.

    ReplyDelete
  60. Found your blog through Notes to Self and am a country girl at heart. Sure you are getting lots of advice so here goes mine. There is a condition that is often misdiagnosed as Alzheimers but isn't it. It is called Normal Pressure Hydrocephalus. Two of the majors symptoms are a slow shuffling gait and loss of short term memory. Look up this:

    http://alzheimers-disease.suite101.com/article.cfm/

    I'll be praying for you and your family.

    ReplyDelete
  61. How terribly frightening for all of you! Take care and just think of it like another problem for Dr House to solve -- excpet you ALL have to be House!

    ReplyDelete
  62. Crying. Praying. Worrying. And you better believe I will be waiting to hear what they find. ((Hugs))

    ReplyDelete
  63. I have no suggestions or advice to offer. I will just say that I am so very sorry to hear about Alex's condition, and the uncertainty that you are all living with right now. I am thinking of you and your family.

    ReplyDelete
  64. More prayers and good wishes from my direction. I hope you get an answer soon -- it's always easier once you know exactly what you're up against.

    ReplyDelete
  65. My thoughts also turn to MS - but that may be because a friend of mine was just diagnosed.

    Just remember to question everything your doctors say and fight tooth and nail if you have to. Doctors don't always have all the answers and you must be your husband's advocate.

    ReplyDelete
  66. I read and reread this post in disbelief and dismay. I'll keep you and Alex in my (version of) prayers. Hugs!

    *lynne*
    (we "met" via the Lost Blogs thingy a few years ago)

    ReplyDelete
  67. How simply awful. So sorry to hear this.

    ReplyDelete
  68. I read this entry a couple of days ago and I have to admit, I have been at a complete loss for words.
    I have been a follower of your web-site as well as on flickr for a few years now... we've shared a word or two here and there... and though we've never met,or any of that sort of thing, you have been brave, honest, open and giving in your communications through your blog. I guess what I'm trying to say is, I do feel as though I know you and your lovely family, if only a "tad" bit and this news of Alex is just.... well, I certainly needn't tell you.... just unbelievably hard to get a grasp of.
    God in heaven I wish I had some insight that would ease your pain and your fears, but I don't. I wish I had some words of wisdom that you might draw strength from... but I am at a loss there as well.
    Though nothing that I have gone through in the past several years with Grave's Disease has been to the degree that Alex is experiencing, I do understand the feeling of a body and a mind that has betrayed. It is terrifying,without a doubt.
    Belinda, all I can offer is my heartfelt prayers, and the daily thoughts of good to come your way.
    I ran into this today in a little pocket sized book of quotes that I have.... and I think it describes it best...
    "words are often inadequate
    to communicate all that we
    feel in our hearts."
    Godspeed to you and your family.
    Lynn

    ReplyDelete
  69. Dang!! I'm so sorry, NinjaPoodles...I'll keep you guys in my prayers...Have they ruled out Krutzfield/Jakob?
    SpottedCrow

    ReplyDelete
  70. I'm a stranger, really - sometimes lurking, commented a few times, but I am so sorry to hear this is happening to Alex and your family.

    I didn't read all the comments, so please forgive me if I'm repeating what others may have mentioned.

    The first few things that come to my mind are: stroke, brain tumor, prion disease or rare hereditary dementia (Gerstmann-Straussler-Scheinker Disease).

    The MRI will probably help pinpoint/rule out some of those.

    My other thought was some bad side effects/reactions to the meds/combination of meds he's already taking. Might be worth looking into to make sure none of them are counterfeits, i.e. not actually what you think they are.

    My thoughts and prayers are with you.

    ReplyDelete
  71. I'd been meaning to de-lurk to tell you how much I enjoy your blog and how many parallels we have in our lives(including chickens!)I wish there was something I could do to eliminate this parallel, but Alex's symptoms sound very much like front-temporal dementia, which has a much younger onset age than does Alzheimer's. see this URL for more info, or write to me. http://www.ftd-picks.org/?p=learnmore.overview

    ReplyDelete
  72. Oh Belinda, I am so sorry. I will be sending your patience vibes and prayers.

    ReplyDelete
  73. I think I lost my first comment...just wanted to say how sorry I am, though I know that doesn't fix anything. I will be sending patience vibes and prayers your way.

    ReplyDelete
  74. I want to scho the thoughts and prayers of others, and add that correct diagnosis is so important. Keep pushing until you find one--even if the doctors tell you that something is unlikely, make sure they rule it out definitively and don't just shove it to the side.

    A few of years ago my then-61 year old brother collapsed at work and was taken to the ICU. It took weeks, and persistant prodding from his wife who is a doctor herself (including a change of specialists), to finally get the correct diagnosis: stage 4 cirrhosis of the liver. The fact that my brother is a lifelong teetotaller, and that his initial liver function tests were borderline and not clearly abnormal, slowed the diagnosis. I tell you this to encourage you to keep pushing until the doctors figure something out.

    My brother also exhibited many of the symptoms you describe while waiting for a liver transplant, due to the fact that his liver wasn't cleaning up the toxins from his blood adequately. The fact that he had also been on anti-depressants most of his adult life encourages me to suggest that, while it may be a bit far-fetched, you have the doctors check out his liver very very carefully. Not everything that results in impaired brain functioning has its origins in the nervous system.

    It has taken awhile, but my brother got a liver transplant and is now doing much better. My prayer for you is that you find a correct diagnosis SOON, and that it turns out to be something treatable, so that you too may get your husband back.

    ReplyDelete
  75. I don't have much to offer by way of thoughts on the symptoms, but I wanted to let you know that as a long-time reader (lurker, mostly) I'm heartbroken to hear about what you and your family are going through. You're all in my thoughts and I'm sending hugs and healing vibes your way. Please keep us posted and let us know if there is anything we can do to help. {{{HUGS}}}

    ReplyDelete
  76. belinda - i am so deeply sorry your family is going thru this.

    your post was amazing and i had to come over here a few times to read it - it's like looking directly into the sun. someone needs to make sunglasses for the heart.

    i wish there was something i could do to help. i would buy chickens from you if i didn't live in a tract home in southern california. actually, they would probably fit right in come to think of it. and i'd buy your veggies if i ate veggies. and i would give you big cuddles and hugs if you didn't get a restraining order against me. damn. i'm way less help than all your other readers. but i do send you every good thought in my body. ok, i know that's not much, but along with some, or alot of, tequila, you might feel better for a minute or so.

    chin up, strong girl. you are not alone.

    ReplyDelete
  77. I do hope you get an answer soon. I would be cautious accepting any disease ruled out by lack of one symptom or age. There are exceptions in both diseases ruled out and both require blood tests and imaging to be sure. Your family is in our thoughts and we pray for the best possible outcome with what is presented.
    I am sure with what you have written you have been adapting but I will share what I learned with dementia (any form). Simplicity and continuity is king and though a dementia patient will not verbalize it the very presentation of choices causes some frustration. Clothing: same colors or only 2 choices, sweatpants, tshirts or snap shirts, slip on shoes--it eases the frustration of dressing choices and inability to zip, buckle ,tie etc. Any of the things you have had to take over (bills, fixing things, driving etc) to be done out of his presence if possible or done without any discussion prompted by you even in his lucid moments. Meals served at the same place/time/dishes with again limited choices, the goal is to retain or put weight on him and if he becomes frustrated with hard to eat food or too many choices he may opt out of eating at all. Open up that place inside we all have reserved for very small children and try to tap into that patience for soul being betrayed by his own body. Let go for now of who he was and embrace who he is making the changes to smooth things for both of you. As you get the diagnoses and treatment things can be shifted back to normal but for now make it a simple predictable life he meets each day. Utilize the things he can do to ease your workload and to also allow him some dignity while whatever this is takes away more of it. Although it may be progressive you might also be told of something that can be treated or controlled better, all of us reading pray and hope for that treatment.
    Right now he is losing himself and you are trying to preserve what he was, fight for what he needs, grieve, get angry and sad -you have the heavier burden and are strong enough to carry it all. There are still moments you are able to connect and know who is trapped in there and *see* him, hold onto those when the blank areas return or when he is confused or frustrated with what is happening to him. I pray you have the answer soon and that no matter the diagnoses you will at least know what your path is.

    ReplyDelete
  78. Belinda,

    I'm not at all sure, but Susie's "WTF" disease sounds somewhat like this, and it is probably Lyme's Disease. I asked her to look at your description, and I'm posting a link to her WTF posts so that you can take a look at her archives/story.

    http://whatwasithinking.wordpress.com/category/wtf-disease/

    You, Alex, and Bella are in my prayers.

    ReplyDelete
  79. Did a little hunting and found a good post that tells Susie's whole story:

    http://whatwasithinking.wordpress.com/2008/08/21/put-the-lyme-in-the-coconut/

    ReplyDelete
  80. Belinda,
    Hang in there. I will be keeping Alex, you and Bella in my prayers.

    ReplyDelete
  81. Belinda, I see that Kim mentioned my WTF disease here. She asked me to come and read. I deteriorated steadily for nearly 3 years, with symptoms sounding quite similar to Alex's. I tested negative for lyme 3 or 4 times, until I learned that the standard tests are inaccurate, and the standardly accepted treatments are ineffective. I have no idea whether Alex has lyme, but it sounds well worth exploring. I've been in treatment for 8 months now, and am doing SO much better. I was falling down, losing use of my arms, slurred speech, didn't recognize my own street, lost vocabulary, etc. Now, I'm about 80% back to normal. If I can answer any questions or be of any help at all, please email me at gumbysusie at yahoo dot com. My prayers are with you and your family.

    ReplyDelete
  82. I'm back, Belinda, after getting an email from Susie... she mentioned a site/movie: underourskin.com.

    Kim
    (Harrison, AR-- Blogospherewise, we're practically neighbors.)

    ReplyDelete
  83. Does he have a good psychiatrist who knows medicine interactions? This sounds like it could be a problem with the bipolar drug (depending what he is on) and neurologist may not be up on the side affects. Good luck.

    ReplyDelete
  84. Yes, the psychiatrist is who sent him to this neurologist, and they are communicating. It's hard to pin anything on the meds, since symptoms have existed before, during, and after several med changes.

    Continued thanks to everyone for your support and input. We're slowly but surely running down every lead we have.

    ReplyDelete
  85. lostsoulhelpmejebusMay 12, 2009 at 1:37 PM

    Belinda,

    I am so sad you and your family are having to go through this crisis. If you need a hand or a shoulder, let me know. I have no doubt you are a strong woman but everyone needs a little support now and then.

    My stepson suffered traumatic brain injury several years ago so I do have an understanding of some of the things you might be experiencing. You just have to hang in there...don't sweat the little things. Let me say that I found that my priorities changed drastically after Jr.'s accident...kind of amazing how you adapt to what life throws your way; you have to learn to bend or you will break.

    ReplyDelete
  86. Belinda, tears rolled down my cheeks when I read of the pain and suffering you and Alex and Bella are going through. I'm a reader, mostly lurker, but find the heart, soul and courage that you exhibit to be something I aspire to. I will ask my husband (ER doctor) to read your blog tonight to see what he thinks. He looks for "zebras" every day (instead of the commonplace "horses") at his work to ensure people get the right care. Perhaps the symptom list will prod his imagination and give you other possibilities to rule out.

    ReplyDelete
  87. I'm so sorry. I hope they find out what is wrong and treat it. It sounds like a terrifying time for all of you.

    ReplyDelete
  88. That sounds like a terrifying time for all of you. I hope they find the cause and are able to treat it. I'm so sorry.

    ReplyDelete
  89. Me and the rest of the Poodlevania crew send big hugs to you and yours, and high hopes that something is figured out soon. We've got all paws crossed for Alex's quick recovery.

    ReplyDelete
  90. Belinda - sorry to hear this but I hope they find out what the problem is, and soon!

    ReplyDelete
  91. Something similar happened to my ex about 10 years ago. We went through every kind of test imaginable. It started with excrutiating headaches. He had his wisdom teeth removed. The headaches got worse. His condition deterirated rapidly over the next 4 weeks, After visiting four different ERs, and 2 separate family doctors to no avail (they kept pushing pain meds on him without trying to find out what was causing the problem)I took him to yet another ER and refused to leave until something was done. After 3 hours, a neurologist saw him. In three minutes of talking to my ex, he could tell something was very wrong. Bill didn't know what year it was, couldn't do simple subtraction problems and lost his balance (while sitting down) three times. A spinal tap was done and within 45 minutes we found out he had meningitis. Within 24 hours we knew the meningitis had gone untreated for so long it caused him to have a stroke. Luckily, he was immediately put on meds to treat the meningitis. Two weeks later, he was back to himself - almost. He had memory trouble, especially phone numbers. Unfortnately, his personality changed over the next year. We broke up. Over the past 10 years he has had at least 8 other strokes. His cognitive skills are deteriorating rapidly. Physically, he loses his balance easily and can't hold on to things with his right hand. I know the pain of watching someone you love slip away. The helplessness, the look on their faces while they struggle to communicate, to understand (we once had a 15 minute argument over what you shave with- toothpaste or shaving cream. I caught him shaving with toothpaste. I tried and tried to explain it to him, but he really did not understand). My heart goes out to you both. It seems so inadequate, but good luck. My thoughts are with you.

    ReplyDelete
  92. @@@@@@@@@ PLEASE READ @@@@@@@@@@@@@@@@@@@@@@@

    IT'S VERY LIKELY THE STATIN/LIPITOR...DEPRESSION, MEMORY LOSS...

    And the weird thing about statins/lipitor is that most reactions to drugs occur in the first few uses, except lipitor...depression and memory loss happen after the drug appears to be okay.

    Lipitor: Thief of Memory
    http://www.medicationsense.com/articles/april_june_04/graveline.html
    http://www.amazon.com/Lipitor-Memory-Statin-Misguided-Cholesterol/dp/0741418819

    http://www.westonaprice.org/moderndiseases/statin.html

    ReplyDelete
  93. You probably don't know this but my father suffered from Motor Neuron disease, or ELS/Lou Gehrig's disease as it's known in the US. I sincerely hope your husband doesn't have this, but some of the symptoms are eerily similar.

    I know me even saying this means I'm imposing or butting in, and I have no intentions of trying to sound like I'm making a diagnosis. I'm not. I so really really hope you get the answers you seek and I'm thinking/wishing/praying for you all xxx

    ReplyDelete
  94. I'm so sorry to hear this, and you and your husband will be in my thoughts.

    And forgive me for adding another random uninformed guess, but have your doctors tested for Variant Creutzfeldt-Jakob disease? It might be a long shot, but the symptoms sound right.

    ReplyDelete
  95. I read an article in Readers Digest today about memory disorders, which included **Normal Pressure Hydrocephalus**. Here's the article: http://www.rd.com/living-healthy/memory-problems-a-staysharp-guide/article134553.html. Info about that disorder is on page 2 of the online article. The part about your husband's slow, shuffling walk made me think of it.

    From a quick search of the comments here, I see that one other person suggested that, as well.

    May you get a diagnosis very soon; may it be a treatable/curable condition; may you get your husband back; and may you and your family have hope and peace throughout this whole ordeal.

    ReplyDelete
  96. Hoping you'll get some answers (very soon) and praying along with everyone else. Good luck, my friend.

    ReplyDelete
  97. Oh Belinda. You're in my prayers. I hope the doctors can figure out what's going on, and fix it. Soon.

    ReplyDelete
  98. I hope you have a GOOD neurologist and that you're also doing your own research and nagging. I'm sure you are oversimplifying when you say alzheimers' is being ruled out because he's too young. Half of all neurologists graduated in the bottom half of their class after all. In these difficult-to-diagnose cases, it's usually the actively-researching, persistent and questioning and listening relatives of the patient who make a big, big difference. Are you being seen at a research hospital, I hope?

    ReplyDelete