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Thread: Jim's Journey

  1. #31
    Distinguished Community Member agate's Avatar
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    Rose, I'm so glad that John is still around. He's been a good friend, and there aren't nearly enough people like him.
    i don't trip--I do random gravity checks.

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #32
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    ((((((Hugs to All)))))) ~

    Thank you so much, Donna & agate.

    John truly is a wonderful person. I donít know how we could have managed without him these past several years. We never have to ask him for anything. He just volunteers.

    He asks us when Jimís appointments are so that he can schedule transporting. He even offered to take me to/from the Social Security Office, when I sort out my income, now that Iím ďretired.Ē I smiled and said that I could take myself, and he said, ďYeah, but why should you?Ē

    Speaking of appointments, Jim is scheduled to see Dr. K on 9/27. That seems like such a long time, but Jim is stable, which we pray will continue. In the meantime, Jim has agreed to having a CAT scan, in lieu of a PET scan and brain MRI. Dr. K will order that, so we can have the information prior to seeing him. Of primary concern, of course, is the status of his tumor and whether there is any metastasis.

    Tomorrow, Nancy will draw blood, and we hope the results are better, or at least as good, as his last draw. And, that we donít have to wait so long to get those results.

    Jim is really enjoying the HD on his TV now. Itís an amazing difference.

    Donna, I donít know why bad things happen to good people. We certainly didnít need the added stress of the mail theft. But, when I tally up all of the problems weíve had since Jonathan passed, I realize how fortunate we are.

    The vanís flat tire and defunct battery happened in our driveway, not when I was out running errands. Our checks just happened to be in a tiny desert town on the way to Johnís vacation. Our plumber easily repaired the bathtub spout, and Jim loves showers now.

    And, most of all, Jim is doing very well.

    Our Angels are definitely watching over us. We have no doubt.

    Thank you both, and to all of our wonderful friends here, for your love, prayers, and support. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #33
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    Rose, so glad that things seem stable health wise. But sorry there continue to be things thrown at you. John is such a gift in your life and it's comforting to know you have someone you can count on. I'm sure he's getting as much from just being with your family and sharing your journey.

    Our neighbor seems to be complying with his order lately so someone must have spoken to him yet again. I'll try and post an update on Kathleen soon with some pictures. We're enjoying our summer and health is good!

    Prayers and positive thoughts going your way always.
    Mary Grace

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  7. #34
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    ((((((Mary Grace)))))) ~

    I'm so happy that you and Kathleen are enjoying your summer! I look forward to your update and photos, as always.

    And, I'm glad that your neighbor is complying with the order. We have to speak up or nothing happens. In our community, I'm seeing slow progress, but the HOA management emailed me that the issue will be addressed at the next board meeting.

    I'm just waiting for one of them to point out our overgrown eucalyptus tree and rusted out gutters. We're being hounded by real estate agents to sell our house. They know we're original owners and old, so they are just waiting for us to die or move to a nursing home. It's disgusting.

    As challenging as it is for me to keep up with everything, I will not give up our home, until I can't maintain it. I raised my boys here. I met and married my husband here. I entertained my dearest friends here. I had many holiday gatherings here. Jonathan passed here. I'd rather pay someone to take care of me in our home than spend my end of life days in a nursing home alone. Here, I am surrounded by memories, and I know that I am still connected to Jonathan and Michael.

    One project, which needs my attention soon, is termite extermination. We're finding evidence of them everywhere now, and before our home falls into a pile of sawdust, we have to do something.

    We've had a visit 3 years in a row from a very nice exterminator to curtail bees nesting under Jim's workshop in our backyard. He also does termite extermination. Some type of orange spray is used, rather than our leaving our home for 3 or more days for fumigation. I worry about the toxicity of it for Jim. Even if we can't smell it, it can probably be harmful to Jim.

    The other thing is that we have two attics, both of which are only accessible through our office closet. Our upstairs office closet is a walk in, and Jim converted it to a mini kitchen, as well as shelving to store various stuff. Dismantling all of this is overwhelming me.It is jam packed with stuff, which I know that I should go through and discard/keep. But there are so many other things demanding my attention, and that becomes pointless. Unless our house caves in.

    Yep. I have a lot on my mind this evening.

    Thank you for your prayers, love and support, Mary Grace. Keep enjoying your summer. Many prayers always for you and Kathleen and your beautiful family.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #35
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    Dear Rose,
    Dismantling your attic and trying to clear out storage is truly overwhelming. Is this necessary to do the termite extermination? The extermination sounds like it's an 'absolutely must-do' chore. And that means moving out for 3 days. Or perhaps not if you can get an organic treatment - I was looking it up and apparently there are several products available that are non-toxic and organic. I'm not sure how well they work, but it's worth looking into vs a very toxic product.

    Our Natalie and Alex are home and we are at the cottage today. It's lovely being together. I am basking in the love and yesterday we spent the day with Nick. He is doing really well.

    Sending much, much love and hoping that today is a good day at the Hacienda. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  11. #36
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    ((((((Donna)))))) ~

    Every time I start writing a response to you, I end up with a novella! Stuff just comes gushing out of me. I started my reply to you yesterday, eventually realizing that I had wandered off on a long tangent.

    Yesterday, as I was sorting out the office mess, I read some of my advocacy letters from the 80s-90s, and it made me nostalgic. I just hate to shred all of this, because it is historic material about our fight for the civil rights of people with disabilities. I doubt that anyone would have a use for it, but I still have this twinge about letting it go.

    Today, I found Jim's VHS tapes for the harmonica. Yes, Jim once played harmonica, and he was pretty good. Our boys loved to listen to him. Then, his interest changed to Native American flutes, and he became proficient at playing and making flutes.

    I asked Jim about disposing of these tapes, as they are VHS, and who would want them? He wasn't happy about that. I understand. This is a part of him and his history. Reality is that people can find harmonica instructions on the internet with ease.

    He also has many harmonicas, as well as two guitars, and lots of flutes. He likes to think that he will be able to get back to all of them. Nothing will happen to them as long as he is with us. Someday, they will be gifts to our friends.

    As for our attics, we don't use them, nor were they intended for use, unless we remodeled our home. Access to the attics is in our office closet, one in the ceiling, and one in the wall. The one in the wall is obstructed by cabinets, with a counter top, which Jim installed to make our mini kitchen. These cabinets have to be removed to access the attic.

    That is why I'm cleaning out the office. And taking trips down Memory Lane.

    Termite extermination is definitely a must-do thing. Our home is 42 years old, and everyone in our neighborhood has had termite extermination at least once. Of course, when a house sells, tenting is automatic. But John's mom told me that their house was tented before they moved in, and then, every 7 years, they had to have termite extermination after that tenting.

    She used the organic orange injection in the wood. She said the heater had to be turned up to 90 degrees for several hours to help it work. And she could smell the orange fragrance. My concern is that, even if we can't smell it, it could still affect Jim's lungs.

    It doesn't matter if the exterminator says it won't bother Jim, because Jim's situation is extraordinary, and he could easily have a problem with it.

    We don't have a comfortable place to sit outside all day, and what do we do when we need to sleep? Jim needs constant access to the bathroom. We could stay in a germy motel room for a day or two. Where I couldn't cook his meals, and neither of us would feel comfortable or safe. And the amount of stuff I would have to pack for that little escape would be a lot of luggage.

    There simply are no good alternatives to this scenario.

    Meanwhile, we have Jim's blood test results, which are very good, as they were last time. Everything is holding stable or improving slightly. We give abundant thanks for this blessing and pray it continues to be so for Jim.

    We send our love to you, Jim, Nick and Natalie and Alex, knowing that you are enjoying such a special time together.

    We thank you and all of our friends here for your love, support, prayers and friendship.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  13. #37
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    :) Rose thank you for the update. Y'all remain in my prayers, John and his family too. Love, Jeanie :)

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  15. #38
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    ((((((Jeanie)))))) ~

    Thank you so much for your prayers. Jim and I are so inspired by your courage and determination, and you're always in our prayers.

    We love you!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  17. #39
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    Dear Rose,
    I know it seems impossible to think of where you will stay during the extermination. But on reflection, every time you have had an obstacle like this in front of you in all the years I've known you, you have figured out a solution that works for your family. I have no doubt this will be the same. Something will turn up that feels not perfect, but OK. That is my prayer anyway! You might consider a storage container for some of Jim's things - if there isn't room for them in the house, it doesn't cost much to store them, or maybe John can keep a box or two. I wrote you another message over on Jon's page - I am so glad you are going through photos! These are the signs and symbols that thread our lives together, right? It's wonderful that you have these images to look at and remember. Sending you much love, Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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