Monday, September 27, 2010

One Month and One Day


The first words that came to mind were "I told you so" but of course I did not say them. I am keeping a lot inside.
My husband insisted he was capable of handling a motorcycle, despite having advanced Parkinson's. We fought about it before and after the fact and needless to say I lost this battle. I stopped fighting about everything, since it didn't make a bit of difference, and peace is preferable. Not to say anything means stepping back and letting go of the reins. This, for a control freak like me, is...difficult.

He is in the hospital in Kingsport TN, on the border near North Carolina, with a broken collarbone. His shoulder is purple. I drove up in the pouring rain, the same pouring rain he left home in on Saturday. Anyone with half a brain would think that rain + motorcycling is not a good mix. I know better, but I didn't quarrel with him about going. And now there he is, in pain, and minus one expensive uninsured motorcycle.

Over the last two years he has had two car accidents in my car, totaling it, and two accidents in his car, with more expensive repairs. Now the motorcycle. This is not a subtle warning. I wonder what it will take to make him stop driving?

Before his disease showed itself, he was the epitome of caution, and never once did he get in an accident, unless you count someone backending him at a stop light. He was always fully insured and never took unnecessary risks. That part of him has disappeared, along with other things that used to be his identity. This is all part of this stinkin' disease. I don't write much about it, since neither of us want sympathy, but this was too close a call, and I am so angry.

Angry at him, angry at myself and angry at the disease which has stolen my husband. None of this is rational, but the feeling is intense. I must find a way to wrest the car keys from him and leave him with some shred of dignity. This is a tall order.
PS. Tomorrow is his 56th birthday.

78 comments:

  1. Lone V7:13 AM

    I know how you feel.
    My father has Parkinsons. He has always been a cautious driver, but with Parkinsions advancing, he is loosing more and more "rutine". Every thing he does, he has to think through to get his body and mind to do. And we are starting to notice that he is thinking and reacting too slowly to be safe.
    So my mother is trying to pull herself to gether to have the TALK.
    Lone

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  2. Anonymous7:20 AM

    I have a lung condition, which I never speak about, but I find myself trying to walk farther, faster etc to prove I still can. I am still here! exercising, because I always have and to be me, must continue.
    It is hard to see your body failing on you and one thinks if only I don't give in, I can DO it, but of course, one cannot.
    Expect depression in your house and good luck to you both.
    Pam in SW Fl

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  3. My heart goes out to you...it is so difficult to "befriend the intimate stranger" our loved ones sometimes become. You will be in my thoughts and prayers as you face these challenges.

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  4. This could have been so much worse and of course, you know this. You live it and we do not. I'm relieved that he will be able to have his birthday tomorrow.

    I don't envy the position you are in at this moment but you are in my thoughts, as is, Dave.

    Debbie

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  5. Georgina Greenwood7:32 AM

    Dear Melody, my thoughts and prayers are with you. I am so sorry for the situation you find yourselves in and applaud that you are brave enough to have spoken out. Losing loved ones to a disease is a tragedy, my Father has Parkinsons' Dementia, none of the classic phyiscal symptoms, my Father-in-law,Huntingdons. Blessings and love, Georgina

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  6. I guess this vindicates the wisdom of not going back to teaching. Thinking of you and Dave. Bon courage.

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  7. My heart aches for you, Melody. You and Dave have built such a beautiful life in Tennessee, the glories of which we have all loved sharing vicariously. Please know how much we admire your courage as you and Dave learn to deal with the limits of the physical body and the persistence of the "can do" spirit, always in tension with one another.

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  8. I am sorry about this. I know it is hard to deal with a loved one who can no longer be rational. It requires untold patience and is so very stressful. Glad you decided to share this. At least we (your blog readers) are able to identify and sympathize with you. Although this horrible disease with only progress, it is good that you have your art and friends to listen.
    Perhaps, you could get his doctor to intervene. In Michigan a doctor can right the DMV and have someones license rescinded. Bonnie

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  9. The platitudes have already been said. Thank you to others for those.

    What I'm most proud of is the fact that YOU know what is worth arguing about and have learned to respect Dave unconditionally.

    Yeah, I know it takes every fiber of your being, and doesn't make you worry any less.

    He had a dream, and followed it. I wish we all could be so lucky.

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  10. Melody, my heart goes out to you. My dearest friend lost her mother in January to Parkinson at age 78. The driving was an issue to the very end. Her mother could hardly dress herself and still wanted to go and take her driving test. The state had failed her several times and the family finally got her to agree to sell her car. My friend gets a call from the police about her mother being in a car accident and that she was in the hospital. Dee had gone out and bought a car, at the dealership she had bought from for 30 years, and was driving it home with a detour into the yard, sideswiping the tree and into the coroner of a house.

    My friend was totally exhausted, on all levels, trying to reason with her mother and help her manage expectations when she was loosing control of their own body.

    You will be in my prayers.

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  12. Melody, i am so sorry--i know this is a sad turning point for both of you. You must impose your wishes and what is right for him and he must give up a part of his joy and freedom. But he will be alive, and safe and that is what matters! Take care-----

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  13. Nikki8:49 AM

    Melody love, I am so sorry. But not in an icky demeaning sympathetic way. Sending good thoughts and strong energy your way as you pick your battles and navigate the path ahead.

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  14. Well..my mother has Parkinson's too. She has her mind and continues to write poetry even though she can no longer walk, BUT her problem solving is gone. The neurologist told her that lost problem solving is part of Parkinson's. So the doctor is the bad guy in our family and told my mother when to stop driving and get help on other issues. I put some of my mother's poems on my blog as she deals with the frustration of Parkinsons. It is very painful to watch. I am thinking of you and sending good wishes your way.

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  15. Anonymous9:12 AM

    God Bless you. It's a tough time and scary. My Dad's driving was dangerous and we tried to get him to stop for years. We were worried not just for him, but someone's loved one. The doctor would not help us get his license revolked, either. He totaled his car two years ago, and luckily the other person wasn't hurt. The only way we got him to stop was to tell him that the police said he wasn't allowed to drive. Dad is now in an assisted living place with alzheimers. And still he tries to buy cars, begs us to help him buy just a little car to go here and there. Men of my Dad's age esp (he's 88 now) get so much of their identity with their independance that this has been the biggest struggle with his disease.
    I pray that Dave will see the harm in his driving and save you the difficult task of insisting he give up driving.

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  16. Jackie B9:20 AM

    I have been thru this with family members. Unfortunately I had a cousin killed years ago by a lady driving the wrong way on the highway. For us it has worked to appeal to the loved ones sense that if they are worried about themselves, maybe they should be concerned for someone else they might hurt in the next accident. But we Americans have always had a love affair with our vehicles and our freedom to go where we want when we want and I know we all find that hard to give up. Good luck!

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  17. Melody,
    You can't blame yourself for this accident. Dave is a grown man, but it would be a good time to try to reason with him, again, that his choices also affect you and possibly some other innocent people on the road. Hopefully, this will be a wake-up call for him (but maybe not if he has already had several accidents). I hope you can work it all out.

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  18. I know what it means to hate a disease. I find it best for me to say what I mean without saying it mean but speaking my truth as you did in your post. I will be sending positive energy your way.

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  19. Melody,
    I'm so sorry to hear about Dave and his accident. Perhaps, while he is in the hospital you can get a social worker to talk some sense into him? If he is still not concerned enough for himself to stop driving perhaps he will give it up to spare some one else who might be an innocent victim of his next accident. I will keep you both in my prayers.

    Lois

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  20. Dear Mel,
    My mom was in your position for over 20 years with my dad. My parents were the sweetest couple, never raising their voices to each other - until Parkinson's invaded their lives. But then my mom would say to dad "I'm not mad at you, I'm mad at the Parkinson's". I must say, when you showed us that he had bought a bike, it was scary. We have a friend you is just finally home after over two months of hospital/rehab after his motorcycle accident, and he was a healthy guy before the accident. So Dave was lucky this time. I hope that sharing your story, and receiving all of our positive thoughts and prayers, is a blessing to you and Dave. Best, Chris

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  21. Warm thoughts to both of you. It's ok to be angry....I understand when you say he is not what he was. Too many diseases do that to people. In Lansing there is a Brain Center that has a driving simulator - they give a really good test and then a written assessment.....takes it away from you, dr, police. This is not an easy time for you - and Dave. (HUG)

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  22. Melody,

    I just wanted you to know that I'm thinking about you at this difficult time. My dad had Parkinson's. It's a terrible disease and my heart goes out to you and Dave.

    Cindy

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  23. Anonymous10:03 AM

    I'm so sorry.

    Sharon

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  24. O melody these are such difficult things. I am so grateful he is ok and understand your anger worry fear. We are praying for you with these difficult decisions. I face the same issues with my mom

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  25. Anonymous10:11 AM

    Melody, My heart skipped a beat as the picture was loading. I will remember you in my prayers.
    Cam

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  26. Marcie10:17 AM

    Dear Melody, what a rotten situation for both of you. Seems unlikely that Dave will be able to think rationally about this, so you have some tough decisions ahead.
    Maybe it would help to consider how you'd like Dave to care for you, if the situation was reversed?
    (Big hug)

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  27. What a shame. I can't imagine how angry and frustrated you must be. I'm sure you realize that taking his keys is what you must do...for his own safety and others. I feel so bad for you I could cry. It could have been worse than a broken collarbone. Thank God his guardian angel was watching over him :) Please feel free to "vent" more often. We're all here for you :)

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  28. Love and hugs Mel. I remember the Dave I met here in IL about 15 years ago and it's hard to hear how much he has changed. I know the medicines do a number on the body and mind as well as the disease. I hope he listens to you now.

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  29. Anonymous10:33 AM

    Melody, i am a mere blogless fan of yours , yet feel i know and care about you because of all your generous and inspiring sharing, so this entry brought tears to my eyes for the sad situation you are both in... and i hope that somehow all the love and caring your readers feel makes it through the technological 'ethers' and helps a little bit to make you stronger.love is always the answer.
    linda m in bc

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  30. I will keep you both in my prayers. Love and hugs.

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  31. So very sorry. This is hard. I have been dealing with this with my FIL. I am so glad he was not hurt worse. Praying for peace, healing, and wisdom.

    Katy

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  32. Oh, Melody! I will be keeping you and Dave in my thoughts and prayers as you navigate this difficult time. I am so glad you were able to vent via the blog! I am so happy to be able to say "Happy Birthday, Dave!"

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  33. I am so sorry---you are both in my thoughts.


    Carol

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  34. Anonymous11:19 AM

    Melody, would a support group for you as caregiver be something you'd consider? TN has at least one, at http://www.mtparkinsons.org/
    Coping day by day is the best one can do sometimes.

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  35. Pammyfay11:22 AM

    Wow. What a difficult situation for both of you. I think it's important for both of you to acknowledge that even the best bike riders could have had that accident, tho, in the rain, and have--so as not to completely disregard his abilities, before both of you then go on to tackle the topic of ways to reduce his vulnerabilities. Although I'm sad he's in the hospital, maybe doctors are doing some additional tests to gauge the progression of the disease, and that hard-medical-facts input will help both of you reach a decision palatable to each of you.

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  36. Unfortunately, this IS fighting the disease. His version, anyway. Perhaps he needs to see it from a different perspective - not so much "You're can't do this anymore"(I mean, who doesn't hate hearing "you can't" - doesn't it bring out the worst impulses in us all?); but rather, "What kind of legacy do you want to leave?" - perhaps somebody else's death or catastrophic injury caused by him is not the legacy he wants to leave...

    Or perhaps I'm just talking through my hat. All of this is much easier to deal with when it's not you dealing with it!

    I wish you strength and patience and healing and some laughter along with a measure of peace.

    Kit

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  37. Dear Melody, so sorry that this has happened, but thankful Dave is relatively OK. I hope you can reason with him, but it is so hard to give up one's independence. He is raging against the disease in his own way too, I think. My thoughts are with you both.

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  38. Hi Mel,
    I'm just so sorry you and Dave are going through this. Such good words to ponder above from all your friends. I hope you can find someone Dave respects, outside of the family, who will be able to get his attention and help him understand. But if, as so many above have stated, he's losing his ability to be rational due to the disease, that might not be the answer either.
    I hope you will consider the support group. Perhaps someone there has "been there, done that" and can help you find a way to navigate this horrible time.
    Sending you both all the best I can think of.

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  39. Anonymous12:08 PM

    Dear Mel,

    Hang in there and keep on being you...genuine, honest and Dave's very best friend. My husband turns 58 tomorrow, and our celebration will be dearer because you share so much with us here.

    Anne Moore...former student

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  40. Thank you for your courageous honesty in posting this. So many of us have family members we love and struggle with due to a disease (physical, emotional or substance abuse). I think sharing can help all of remember were not alone in our struggles. My best to you and Dave.

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  41. I'm so sorry to hear about Dave's accident. I know from experience that the driving issue can be a battle from start to finish. Giving up driving is that last bit of total independence. If you can't drive, then you have to depend on someone else and that is an extremely hard thing to do. I think you would feel the same way.
    Obviously I don't know Dave but I am wondering if because of the changes his disease have made in his life that he isn't feeling like maybe it would be better to die doing something he loves than to let the disease do its worst. Having dealt with a number of deaths in the past couple years, I found that the one thing I most often heard is that the people wanted to "die on my own terms." Poor Dave is losing control on so many levels that it will be such a hard thing to deal with.

    Thoughts and prayers to you both. God bless and keep you and give you both the strength and patience for the road that lies before you.

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  42. Dear Melody, I have a close family friend with Parkinsons and they too are at the stage of getting him to relinquish his license. They are contacting his doctor and the DMV so they will not be the heavies, and the "do not drive" comes from an official agency. I'm glad Dave's injuries were not more serious. He was truly blessed considering a triple combo of motorcycle, his disease, and the rain. This stinks for you both. I'd be angry and frightened too. Sending love and prayers to you. Judy Sebastian

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  43. Oh, Mrs Mel - I was hoping against hope that this would not happen. I am sending up prayers for both of you. Does he have a legal driver's license? Is this one route to take - if you can pass the test, you can drive. I don't know what I would do, but I do know that driving and advanced Parkinsons do not mix. Love to you both.

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  44. Dear Dear Melody,
    As you share your feelings, you also share the burden. We can help you carry it. Keep up the beautiful art work, it will help heal.
    The neurologist gave my Mother a few mental and physical tests and told her not to drive. Dealing with a man is probably a different story but maybe worth a try.
    God Bless.
    PK (Blogless)

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  45. Melody, my heart aches for both of you. It’s so normal to be angry - and at the same time relieved, I imagine, that Dave’s accident injuries will heal. You must talk together about this - and good luck on that front! No one wants to give up their freedom to drive, but there are others on the road to think about. What a terrible dilemma. Know that for every one of us who speaks up to offer comfort to you, there are probably a dozen who remain silent, but whose thoughts and prayers are there to buoy you along. We all love you! Big hugs, Cathy

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  46. Hello Melody

    I have read your blog for a while and your situation sounds all too familiar. My dad had alzheimers and we couldn't figure out how to get him out of the car.

    My mom finally took him to their inusurance agent who also happened to be a life long friend. This man gave it to him straight and he gave my mom the keys.

    Wishing you the strength and courage you need to deal with this disease.

    Sarah

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  47. Anonymous2:14 PM

    Melody, so sorry to read about Dave's accident. Thankful that he wasn't hurt worse. I would ask the doctor to help you out on this. I know our doctor told my dad he had to give up driving and he argued back but he did relinquish the keys.
    Regina in Knoxville

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  48. Melody - I feel your pain and heartache. Some diseases are so cruel. Hang in there - you still have a rough road to travel. I am thinking of you. Cheers! Evelyn

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  49. Anonymous2:38 PM

    Melody, I am so very saddened by this turn of events for you and your husband. You are both in my thoughts....

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  50. Hang in there Mrs. Mel! Sending love and good thoughts for you both.

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  51. Anonymous3:45 PM

    Dear Melody,

    Diseases that alter the mind are awful for those who have them and those who love them. When you share your frustrations with your friends in blog-land or in a support group for those living with Parkinson's patients I hope the feelings of support heading back your way will help to ease the burden.

    And Happy Birthday to Dave!

    Hilary

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  52. He is so lucky to be with you, as you do respect him so much without hurting his selfesteem. Use all your creativity to support him, and we all know how very creative you are, shining like the sun.

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  53. Anonymous4:00 PM

    Hi Melody,

    Sorry to hear about Dave's accident. I think the idea of having his doctor contact DMV is a good idea. That way he can't blame you. Had to do that with my Dad.
    Hope he has a speedy recovery.
    (You too)
    Joyce

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  54. Anonymous4:07 PM

    Turn him into the state! I'm sure they would like to know about all these accidents that are costing money.
    I hope you are at peace and will rest soon.
    Sorry to hear bout your hubbys accident - My Mom has dementia and she couldn't figure out HOW to run the car - that's about the time she lost the right to drive - that and the "Adult Protective Division" dept. coming to see her. She couldn't talk and - she showed the card to me and I found out about her getting angry at someone when they told her her car was FULL of gas already! She pealed out of the gas station and the sheriffs were notified ... that was about one week or so b4 I heard about it.

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  55. Hi Mel
    I am sorry to read your news. I am in agreement about having the doc do the dirty work of stopping Dave from driving, before he hurts someone else, too. We had a similar problem in our family and when we called the doc he said there was "NO WAY" our relative was driving and we said, "WAY"!
    Take care of yourself, too.
    XO

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  56. Mel,
    give him a kiss on his bald little head for me. I wish you both well.
    Laura

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  57. Mel, Wish we could say this will be the end of it, but they don't think rationally. Just when you think things have calmed down these diseases rear their ugly heads and strike again. Thank, God, nobody else was hurt. I am so sorry for you and Dave that you are having to live with this horrible illness. Nuff said... we've talked about this...hugs and a willing ear.

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  58. I am so sorry. i have no idea how you cope. You sound pretty rational considering...

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  59. I am so sorry to hear about your husband's accident. I don't know very much about Parkinson's (although I watched a tv interview with the actor Michael Fox, who also has this disease, and I learned a bit) but I can't imagine how difficult it must be to deal with it, for both of you. I also think a support group for the two of you would be beneficial.

    I wish both of you the best, and you will be in my prayers.

    Kristin in SC

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  60. I am so sorry to hear about your husband's accident. I don't know very much about Parkinson's (although I watched a tv interview with the actor Michael Fox, who also has this disease, and I learned a bit) but I can't imagine how difficult it must be to deal with it, for both of you. I also think a support group for the two of you would be beneficial.

    I wish both of you the best, and you will be in my prayers.

    Kristin in SC

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  61. Anonymous7:30 PM

    My Dad died three years ago, at age 77. He had Parkinson's for about 20 years. Between the disease and the meds, he gradually lost his ability to have rational judgment. He kept thinking he could drive to town, wanted to order stuff with a credit card on the phone, etc. My Mom had to be one tough, but loving, cookie. Thinking of you as you go through this with him.
    B.

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  62. Your strength is amazing. You can do this. We all know you can. Dave is lucky to have you on his side, even if he doesn't realize you are on his side.

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  63. Oh Melody, How difficult for you. we can only offer our sympathy and let you know that through your blog you've gained loads of people who are rooting for you.

    Kai Kaha,

    Be strong

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  64. I am so very sorry to hear of your troubles. I can relate in more ways than you will ever know. It is obvious that you and Dave are very strong people and live your lives to the fullest. Even though I realize that you are not asking for a pity party, I wish you the best of every thing with the issues to come. The car keys/dignity, et. al.; his ability to enjoy what he likes to enjoy and your ability to deal with all of this with peace of mind. I am shedding a few tears for you, as I know first hand what you are going through. I wish you both the very best.

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  65. I am so sorry about your situation and hope the fact he is still alive is a reminder for him to not drive. He is lucky to be alive. I remember my Mother never forgave me till the day she died for not permitting her to drive. I knew she should not. It is an awful place for you to be in and you have my sympathy and I will send good thought. Elizabeth Zimmermann said "knit on with confidence and hope through all crisis" I think at this point it about all you can do.

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  66. I'm thinking of both of you and I hope Dave heals quickly.

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  67. So sorry Mel about Dave's accident and the disease showing itself more often these days.

    He probably knows deep down that he needs to stop driving but the fight in him against this disease and what it's taking away from him still supersedes all reason and rationality.

    Hopefully this last accident on the motorcycle is the wake-up call he needs to finally let go and accept.
    Thoughts and prayers with you both.

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  68. Oh dear Melody! WHat a shitty shitty thing this is! My thoughts are with you and Dave.

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  69. I think he might be desperate, trying to do some things by himself, still have a last bit of freedom from the disease, all my sympathy, it is hard for both of you.

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  70. No wisdom to add, just joining the chorus of sorrow and frustration with a crummy situation and a close call. Hope Dave comes to realize what needs to happen. Be strong.

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  71. I am so sorry to hear Dave is in the hospital and the struggles you face with his disease. I appreciate you putting in on your blog since I think so highly of you and count it a privilege to pray for you and Dave especially in this latest struggle.

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  73. Thinking of you. In my mom's case, she had dementia and was so smart and intuitive, the more she lost, the harder she tried to keep being "normal"...whatever that is. I suggest supportive counseling for you, this next part is so hard...unfortunately this doesn't just involve him. He is going to have a hard coming to grips with that. But, as you know, for you to be able to see this thru, you have got to take care of you.
    Blessings,
    Cathy B

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  74. I am sorry to read about your hubby's accident. It is a worrying time for you, but at least he is alive.

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  75. Judy from Northport12:38 PM

    My beau has health issues and is constantly testing himself, sometimes to the detriment of his health and safety. I would say that this is what guys do, but I think it is what people do.
    It is difficult to accept the limitations that illness and ageing impose upon our bodies, especially when we are wondering who the old person in the mirror is, and sometimes more difficult to protect the health and safety of others who may be affected by our loved ones' rash behavior.
    Believe me, you are not alone.

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  76. I'm sorry to hear this Melody. My husband just gave his car to his daughter because he cannot drive anymore. He is in hospice care for lung and heart issues. It was very difficult for him to do and I hate seeing him feeling defeated in this. Not an easy situation for either of you. Here's to hoping it sinks in for him soon.

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  77. Hi Melody,
    I never knew that parkinsons disease affected the mind too. I can understand you being angry and wondering when he will stop driving. In the Netherlands (where I live) peoples drivers licenses are revoked when people make too many accidents due to sickness or physical problems, do they do this in the USA too? For your sake I hope so, because the alternative is to horrible to think about.

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  78. I'm so behind that I just read about Dave's accident this evening. I'm truly sorry but thankful that he's alive. I hope this will provide a much-needed wake-up call for him AND provide you the strength to help him make difficult decisions. Love will conquer all; I'll hold you both up to the light.

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