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Thread: Jim's Update

  1. #611
    Distinguished Community Member agate's Avatar
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    Rose, I have an iPad but it's an older one that my DIL no longer wanted. I was finding it difficult to deal with though using a stylus instead of my fingers has helped. I got hold of a book that has been useful, and you might want to look into it too. Actually it's mainly for more recent iPads than mine but it has helped me with mine too. It's called iPad: The Missing Manual by David Pogue. He does the NY Times tech columns quite often.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #612
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    Rose so glad things are still going well. Glad the newest infusion went well. I hope you can get the iPad up and running. We gave my mom one a few years ago and she loved it but needed a couple of personal tutorials. We more recently gave her my old laptop and she still hasn't got that down after 2 tutorials. You're right anything is possible and 80 is not out of the question. My mom has had several health issues including colon cancer and hear bypass and in November she will be 90 and is living on her own! Keeping all the healing prayers coming.

    Funnylegs, Im so sorry for the loss of your friend.
    Mary Grace

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  5. #613
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    Thumbs up

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Thank you for the reminder about Apple contact. It's been awhile. I hope you're right about not needing a router.

    agate ~

    Thank you for your suggestion. David Pogue has written many books about internet stuff. Isn't he the guy who started the "Dummies" series? Yeah...Google is my friend:

    https://en.wikipedia.org/wiki/David_Pogue

    John tried to help us today, but he determined that we need to have a router. So I have to call Spectrum to get it all set up. John even called his wife and his cousin, who he said "are better at this stuff than I am." Both of them said we need a router. John said that he would help us set it up after we get the router.

    I hate calling Spectrum. I hate Spectrum! I'm still in web mail he//, because they took away my Mac Mail. And it takes hours for me to get anywhere with them. But, clearly Jim can't use his iPad, unless I call and get a router.

    I should also order David Pogue's book. I have his manual (it's gigantic) for the El Capitan OS upgrade, which I never installed. Figuring out technology exhausts me. It really stresses me and wears me out. And I can't afford that these days, since I'm basically on overdrive constantly.

    Mary Grace ~

    Your mom is AWESOME! Wow! Now, she's a Super Survivor!! Since she's an expert on the iPad, maybe you could PM me her phone number, and she could teach us!

    Thank you all so much for your love, prayers, and help!

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  7. #614
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    Rose, I did not like the Dummies books but have found the Missing Manuals to be very useful.

    Good luck and may the Force be with you!
    ANN
    There comes a time when silence is betrayal.- MLK

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  9. #615
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    Hi everyone! I am here catching up after far too long away from CN2! Rose, I am so glad that Jim's infusions are going well and that he has gained weight! That is wonderful. And of course he will live at least another 10 years in your care xox. Re the Ipad, there are two types of Ipads - one is called 3G and that type works like a cell phone. You have to buy a phone plan to support its functionality. The other 'regular' Ipads work on wifi - for that, you need a router. Spectrum sounds like a pain, but with all the competition in the provider marketplace, I'm sure you can much better service either by complaining or by getting a different provider. However you don't have the energy for all that! So, I found this company that handles all that stuff (but they don't seem to do Apple - but they would know a similar company that would) http://www.imcco.net/seniors/. Also, you could call Apple and they would give you advice over the phone. (714) 989-5550 They could recommend someone who could come WITH a router, set it up, fix your internet and email, and set up the Ipad. Good luck my dear!!! I get so frustrated and stressed by tech problems too but Apple people are all really nice (trained that no question is a stupid question LOL). We just got back from the cottage and while I was there, my sister got an email from a russian hacker who said to send $1K or he would send hateful emails to all her contacts and the weird thing is that he knew the password for the router at the cottage!!! So, we called the police, the RCMP internet fraud people, changed our passwords, of course did not send any money, and then we started to google the scam. Apparently it's very common. In security breaches like Amazon and Walmart, they scoop up tons of personal data including passwords that are then sold to crooks on the web. Anyway, that's what happened to us - sheesh! What a world - it's stressful alright. But apparently they CANNOT get into our systems, nor do they even really want to - they just want people to send them money which I guess some people do.

    We are home now and I've been seeing Nick every day which is great - he's fine! He's very excited because he's trying out a black box which attaches to his TV and gives him every single UK TV station including Sky sports which he loves (Jim will know :) ) Anyway, Nick is very happy and healthy these days, thank goodness and touch wood. I'm working on getting my new book finished - it's due for delivery to the publisher on Sept. 1! So the deadline is looming. But it's almost done so I'm not really worried. Daisy our puppy is growing SO fast and yesterday she just learned how to climb stairs. She is a darling.

    I send everyone here lots of love and well wishes for your children and families. 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. #616
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    ((((((Hugs to All)))))) ~

    ANN ~

    The Dummies books were helpful to us as computer/internet beginners. The missing manual for El Capitan is gigantic. A friend sent it to us a few years a go to help us upgrade our OS. I was doing our taxes at the time, and I didn't have time to learn anything new or mess up our system so I couldn't access the IRS site for forms and info. After that, I just carried merrily along with our old OS, and now it's so outdated that I can't upgrade it. Or maybe I can, but I haven't looked into it.

    Donna ~

    Thank you for the links and information. Apple is on my list of phone calls. I did have a very helpful tech last November, when I lost our Mac Mail, but he wanted to spend 5 hours on the phone with me, stripping down our whole system and starting over. I just didn't have the time or energy to do that.

    Changing providers is also time-consuming, and I don't know what I'm doing, so I have to rely on John to guide me. I just do not have time for any of this.

    I'm anxious for your book to be published! I'm sure it is fantastic.

    So happy to hear that Nick is well and happy. May it continue to be so! I'll ask Jim about Sky Sports. I'm sure he wishes he could have it. He loves to watch soccer and international golf tournaments. But with Nascar on most sports channels, it's often hard to find them.

    I need photos of Daisy!!! Really. I mean I NEED them!!!

    OUR UPDATE

    We received a notice last Thursday that Jon's new IHSS case worker is planning to visit to do his assessment tomorrow, August 1, at 11:00 a.m. I called the case worker, a man with an Indian accent, and I explained that Jon may be asleep when he arrives. I also asked that him to arrive after 11, because we are busy with Jon in the mornings (water flushes/meds/formula).

    So, I've spent the last 4 days deep cleaning. DEEEEEEP cleaning!

    Today, I changed Jim's linens on his futon nest (it's in the living room). It's queen sized with a very heavy mattress. It's hard to make, because it's shoved into a corner.

    Then I cleaned the glass patio doors and kitchen window inside and out, and Jim removed the screens, which I hosed down. Swept some leaves off the patio. Gardeners arrived, and Jim sent them to the back yard to rake leaves off of our dirt, and dig up a few weeds. Jim also cleaned Michael's pond and pump. Algae really collects quickly.

    I cleaned the floors, vacuumed the rugs and stairs, dusted everywhere. I've been moving furniture, taking out bags of trash. Yesterday, I brought in 10 heavy cases of Jon's formula from the front porch, which John put in Jon's closet, when he came over to turn Jon last night.

    I ache everywhere and can barely walk.

    Jon has been in IHSS since 1986, but I still have to fill out a form listing all of his conditions, his meds and doses, the names of his physicians and their addresses, and our names, ages, and relation to Jon. Every single year.

    The case worker said that there's a new assessment form this year, where he assesses on a scale of 1-5 Jon's abilities to perform self-care tasks. I laughed, "ZERO! ZERO! He's completely dependent for all of his care 24 hours of every single day."

    Jon has to sign a form giving Jim permission to be his IHSS Authorized Representative. Jim signs all of the forms. I am essentially a nobody. I'm the "Provider," the employee. Jim is the Supervisor, who signs the time sheets verifying that I did the work.

    I told the case worker that I will have to help Jon sign, hand over hand. I explained to him that Jon understands that he needs to sign forms to keep his services, and he does it willingly. But he needs help. Case worker was fine with that.

    Let me just say that I am grateful for IHSS, and it saved our lives in 1986, when I'd been unemployed for over a year, and we had $300 to our name. I went to Social Security begging for Jon and Michael to get SSI, and the social worker told me about IHSS, where I could be paid to care for my boys. Truly a Godsend.

    But, IHSS is not designed for people, like Jon, who need acute care. So, it will not meet his needs, should Jim and I no longer be here to care for him. He will need RN care.

    And being asked how long it takes us to perform a task for Jon is absurd. He needs 24 hour care, and he is completely dependent. How long does it take to perform his tasks? 24 hours. IHSS pays for 9 hours out of 24.

    IHSS visits are extremely stressful, and every parent, who has cared for their child through IHSS, will testify to that in court. But it's not the right program for our children. It isn't designed for people with severe disabilities and multiple medical issues. But, it is the only game in town. And so, every year, we play the game.

    Thank you all for your prayers, love, and continuing support and advice!

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  13. #617
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    ANN ~

    The Dummies books were helpful to us as computer/internet beginners. The missing manual for El Capitan is gigantic. A friend sent it to us a few years a go to help us upgrade our OS. I was doing our taxes at the time, and I didn't have time to learn anything new or mess up our system so I couldn't access the IRS site for forms and info. After that, I just carried merrily along with our old OS, and now it's so outdated that I can't upgrade it. Or maybe I can, but I haven't looked into it.

    Donna ~

    Thank you for the links and information. Apple is on my list of phone calls. I did have a very helpful tech last November, when I lost our Mac Mail, but he wanted to spend 5 hours on the phone with me, stripping down our whole system and starting over. I just didn't have the time or energy to do that.

    Changing providers is also time-consuming, and I don't know what I'm doing, so I have to rely on John to guide me. I just do not have time for any of this.

    I'm anxious for your book to be published! I'm sure it is fantastic.

    So happy to hear that Nick is well and happy. May it continue to be so! I'll ask Jim about Sky Sports. I'm sure he wishes he could have it. He loves to watch soccer and international golf tournaments. But with Nascar on most sports channels, it's often hard to find them.

    I need photos of Daisy!!! Really. I mean I NEED them!!!

    OUR UPDATE

    We received a notice last Thursday that Jon's new IHSS case worker is planning to visit to do his assessment tomorrow, August 1, at 11:00 a.m. I called the case worker, a man with an Indian accent, and I explained that Jon may be asleep when he arrives. I also asked that him to arrive after 11, because we are busy with Jon in the mornings (water flushes/meds/formula).

    So, I've spent the last 4 days deep cleaning. DEEEEEEP cleaning!

    Today, I changed Jim's linens on his futon nest (it's in the living room). It's queen sized with a very heavy mattress. It's hard to make, because it's shoved into a corner.

    Then I cleaned the glass patio doors and kitchen window inside and out, and Jim removed the screens, which I hosed down. Swept some leaves off the patio. Gardeners arrived, and Jim sent them to the back yard to rake leaves off of our dirt, and dig up a few weeds. Jim also cleaned Michael's pond and pump. Algae really collects quickly.

    I cleaned the floors, vacuumed the rugs and stairs, dusted everywhere. I've been moving furniture, taking out bags of trash. Yesterday, I brought in 10 heavy cases of Jon's formula from the front porch, which John put in Jon's closet, when he came over to turn Jon last night.

    I ache everywhere and can barely walk.

    Jon has been in IHSS since 1986, but I still have to fill out a form listing all of his conditions, his meds and doses, the names of his physicians and their addresses, and our names, ages, and relation to Jon. Every single year.

    The case worker said that there's a new assessment form this year, where he assesses on a scale of 1-5 Jon's abilities to perform self-care tasks. I laughed, "ZERO! ZERO! He's completely dependent for all of his care 24 hours of every single day."

    Jon has to sign a form giving Jim permission to be his IHSS Authorized Representative. Jim signs all of the forms. I am essentially a nobody. I'm the "Provider," the employee. Jim is the Supervisor, who signs the time sheets verifying that I did the work.

    I told the case worker that I will have to help Jon sign, hand over hand. I explained to him that Jon understands that he needs to sign forms to keep his services, and he does it willingly. But he needs help. Case worker was fine with that.

    Let me just say that I am grateful for IHSS, and it saved our lives in 1986, when I'd been unemployed for over a year, and we had $300 to our name. I went to Social Security begging for Jon and Michael to get SSI, and the social worker told me about IHSS, where I could be paid to care for my boys. Truly a Godsend.

    But, IHSS is not designed for people, like Jon, who need acute care. So, it will not meet his needs, should Jim and I no longer be here to care for him. He will need RN care.

    And being asked how long it takes us to perform a task for Jon is absurd. He needs 24 hour care, and he is completely dependent. How long does it take to perform his tasks? 24 hours. IHSS pays for 9 hours out of 24.

    IHSS visits are extremely stressful, and every parent, who has cared for their child through IHSS, will testify to that in court. But it's not the right program for our children. It isn't designed for people with severe disabilities and multiple medical issues. But, it is the only game in town. And so, every year, we play the game.

    Thank you all for your prayers, love, and continuing support and advice!

    We love you!

    Love & Light,



    Rose
    Hi Rose,
    RE: The Apple Upgrade. I had the same problem. You have to have El Capitian to upgrade to Sirerra and High Sirerra on Mac OS. If your “App Store” works you probably can upgrade. Mine would not upgrade at all. If you can’t use “App Store” what you can do is backup your entire system via Time Machine software in Mac(I know how to do this and can type up instructions) to an external hard drive with the same GB size as your computer then you can have Apple show you how to re boot the entire system to the newest version. You NEED to backup your system because the reboot destroys all data in the computer if I remember correctly. Time Machine puts the data back in. It may be best to go to an Apple store to do this where you would drop the computer off and come back when they finish the re boot, but given your situation I realize you may need to do it via phone. It takes hours but I’m not sure how many hours. I will tell you the upgrade is well worth it once the old version of Mac OS becomes completely unusable as mine did. The upgrade protects you from viruses and other problems.


    Mary Grace, thanks!

    Donna, thanks! My teacher friend with the stroke must have been referring to 3G iPads. :)
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  15. #618
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up A Positive Day for Jim!

    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Last year, when I lost our Mac Mail, I spent hours on the phone with Spectrum and Apple. and I still got nowhere. The Apple rep offered to help me strip down and rebuild our Mac. It was November, and I didn't have the time or the energy. That's when Jim was diagnosed with the metastasis to his skull and started radiation.

    There is no way that I could lift and carry our iMac. The monitor is very large, and it's heavy. I will not ask John to take it in, because he has far too many responsibilities as it is.

    I haven't addressed Jim's iPad situation yet, because I've had other urgent matters to handle. Like retaining Jon's IHSS hours, and now managing a contract with Regional Center. Very important, priority stuff, as it pertains to our income.

    Our friend, who has helped us with our computers over the past 20 years, is having serious health issues now, so I can't burden her with any of this.

    I cannot emphasize enough how much I dislike having to deal with anything technical and complicated. Jim knows this, and he feels the same way when we have technical problems ~ frustrated and incompetent. So, he is waiting patiently until I have time and strength to begin the process, which I know will be unpleasant. It always is, no matter how easy it may be for others. I just cannot slot away 5-6 hours on the phone to deal with computer stuff. I have work to do!

    JIM'S GOOD REPORT

    Dr. K was quite pleased today with how well Jim is. Vitals, blood work, weight gain ~ all excellent. Lungs sound good.

    He told Jim that the oncologists have been authorized to give double the Opdivo dose to patients, who choose that option. That would mean that Jim would have one instead of two infusions per month. Dr. K said, ďI donít want to do that with you. Iím concerned about RA flares, if we push it.Ē Then he asked Jim what he wanted to do, and Jim said heís fine coming in every two weeks.

    Jim informed Dr. K that he has needed to take more than the usual amount of steroids the past 2 weeks. The heat and oppressive humidity are wreaking havoc with his joints (mine too). Dr. K said that was fine, as he knows that Jim is cautious about taking them.

    While waiting, Jim struck up conversations with other patients, and they swapped stories about their treatments. He said everyone was unusually chatty today.

    After seeing Dr. K, Jim had his infusion. Now, heís sleeping and looking forward to the red potato salad I made for dinner.

    We are so grateful for how well Jim is doing and for the superior care he is now receiving from Dr. K. And we thank all of you for your continuing love, support, prayers, and positive, healing energy. You are all in our prayers too.

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  17. #619
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Last year, when I lost our Mac Mail, I spent hours on the phone with Spectrum and Apple. and I still got nowhere. The Apple rep offered to help me strip down and rebuild our Mac. It was November, and I didn't have the time or the energy. That's when Jim was diagnosed with the metastasis to his skull and started radiation.

    There is no way that I could lift and carry our iMac. The monitor is very large, and it's heavy. I will not ask John to take it in, because he has far too many responsibilities as it is.

    I haven't addressed Jim's iPad situation yet, because I've had other urgent matters to handle. Like retaining Jon's IHSS hours, and now managing a contract with Regional Center. Very important, priority stuff, as it pertains to our income.

    Our friend, who has helped us with our computers over the past 20 years, is having serious health issues now, so I can't burden her with any of this.

    I cannot emphasize enough how much I dislike having to deal with anything technical and complicated. Jim knows this, and he feels the same way when we have technical problems ~ frustrated and incompetent. So, he is waiting patiently until I have time and strength to begin the process, which I know will be unpleasant. It always is, no matter how easy it may be for others. I just cannot slot away 5-6 hours on the phone to deal with computer stuff. I have work to do!

    JIM'S GOOD REPORT

    Dr. K was quite pleased today with how well Jim is. Vitals, blood work, weight gain ~ all excellent. Lungs sound good.

    He told Jim that the oncologists have been authorized to give double the Opdivo dose to patients, who choose that option. That would mean that Jim would have one instead of two infusions per month. Dr. K said, “I don’t want to do that with you. I’m concerned about RA flares, if we push it.” Then he asked Jim what he wanted to do, and Jim said he’s fine coming in every two weeks.

    Jim informed Dr. K that he has needed to take more than the usual amount of steroids the past 2 weeks. The heat and oppressive humidity are wreaking havoc with his joints (mine too). Dr. K said that was fine, as he knows that Jim is cautious about taking them.

    While waiting, Jim struck up conversations with other patients, and they swapped stories about their treatments. He said everyone was unusually chatty today.

    After seeing Dr. K, Jim had his infusion. Now, he’s sleeping and looking forward to the red potato salad I made for dinner.

    We are so grateful for how well Jim is doing and for the superior care he is now receiving from Dr. K. And we thank all of you for your continuing love, support, prayers, and positive, healing energy. You are all in our prayers too.

    Love & Light,



    Rose
    Hi Rose, so relieved Jim is doing well! More prayers for that to continue. I completely understand about the computer. Of course I realize you are under a ton of stress. Sorry about your rash too :( I stupidly assumed your Mac was a laptop. My bad! If I could I would fix the computer for you but I'd likely really screw it up.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #620

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    Happy to hear Jim had a good visit with Dr. K. He treats Jim with upmost respect and care.

    How are you doing?

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