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Thread: Worried about my daughter

  1. #11
    Senior Member lynnifer's Avatar
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    Well, she's in the heart of thing to do up there!

    I tend to be a loner anymore either.

    I have to be up in the Big Smoke on June 10th if she wants to meet for expensive snobby drinks (lattes, chai etc). Or I'll be back sometime in July and August as well. Pass along my email if you like lynnifer at hotmail dot com.

    I was paralyzed at 12 due to sudden onset of Transverse Myelitis. Kind of a dysfunctional family so left the home farm at 18. It's been 30yrs this summer. I've been where your daughter is for sure, though I was lucky to be T11.

    P.s. The sailing crew meet at the Harbourfront Park on Sunday's when warmer. Doesn't hurt to go for a drive and watch from the car. She may or may not be intrigued ... but there will be people less and more disabled than her out in Lake Ontario!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #12
    Senior Member
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    Connecticut
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    The Reeve Foundation has a peer mentor program. They also do peer mentoring for family members/caregivers. Even if sh dosent want a peer mentor you could have one...someone who is a caregiver in similar situation.

  3. #13
    Would prob be great for her to get a service dog.

    How are her eating habits?

  4. #14
    It sounds like she is depressed. And her isolation is not good...

    Is she seeing her doctors? How often? Does she have a SCI physiatrist? A primary care doctor? Does she like them? Are they decent doctors?

    It upsets me very much that doctors are not better about treating depression aggressively - especially in the early years after injury. It is very common, and normal. Some people are severely affected by it, but others aren't. They are doing studies now showing that treating this depression is important for recovery as well as improving mood/quality of life. At our local rehab center (which is a SCI center) they are doing a clinical trial using the anti-depressant Lexapro in SCI patients soon after injury, with some evidence it may improve recovery..... Here's another clinical trial that was just published and shows a good outcome using Effexor in the famous medical journal JAMA.

    http://www.ncbi.nlm.nih.gov/pubmed/25607727

    Print this out and give it to your daughter's doctors.... and your daughter. Most doctors are sloppy and don't take the time to address it. Sometimes a medication can be a short term (or long term) solution.... especially for a person that has isolated themselves and doesn't have support/counseling/other options. The best combination is a medication AND counseling. But again, the vast majority don't get this.

    Does she suffer from neuropathic pain? There are medicines that help this pain and are beneficial for mood. Effexor (in the trial above) and Cymbalta are two of them. Sometimes people will agree to start a medicine for something other than mood, even if they will refuse it to treat their mood alone.

    And you need to choose your battles, and realize that you cannot (and should not... ) take over her life. Do not mention her changes in her body/atrophy... there are few things more damaging to a young woman's self-image than critiques of their appearance, and I'm sure she is very very very aware. You also are describing normal atrophy considering her injury. Do not berate her for not "preventing this". Do not mention her food choices, exercise, or even cathing at this point. These are less important and will not improve until her mood does. You will only make her feel worse by nagging. Believe me... I speak from experience.

    Support her. Have her over for home cooked meals. Get her outside in the sun (good for mood). And have her meet Bethanny!! I do love the idea of a service dog....

    I'm actually surprised others on this site haven't mentioned medications.

    Sometimes a call to the doctor expressing your concerns is needed, especially if she has mentioned wanting to hurt herself. Sometimes it will be the UTIs/cathing issues or other self-care issues that will at least get you back into the doctor's office so the main problem can be addressed.... so you may need to let those go until she reaches a crisis. Meanwhile, just give her love and support like you have......

  5. #15
    Senior Member marvin_cr's Avatar
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    does she have a manual wheelchair? At C7, she should be able to use a manual chair a couple days a week. she needs to get a routine going that gets her out into the public. Has she ever thought about joining gym or fitness center. Gym's have came a long way in the 30 yrs I have been in a chair. The gym i go to, there is a quad I have seen many times and several Para's. When I first joined a gym, and for a month or so, no one talked or paid attention, but eventually people wanted to help and talk to me. Now when I go to the Gym everyone wants to talk and I just want to workout. It's a routine now in my life I look forward to. before you would join visit as many as you can. you should also be able to find a trainer that will find appropriate exercises for your daughters arms and shoulders. If she is willing, it will become a routine she looks forward too, she will get fit, and she will meet people.

  6. #16
    Senior Member marvin_cr's Avatar
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    i forgot to mention, working out at the Gym for me, is a great way to burn off the stress and depression that always accumulates during the day

  7. #17
    Senior Member lynnifer's Avatar
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    Does she like to read or watch certain TV programs? If she can find commonality at all.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #18
    Quote Originally Posted by marvin_cr View Post
    does she have a manual wheelchair? At C7, she should be able to use a manual chair a couple days a week. she needs to get a routine going that gets her out into the public. Has she ever thought about joining gym or fitness center. Gym's have came a long way in the 30 yrs I have been in a chair. The gym i go to, there is a quad I have seen many times and several Para's. When I first joined a gym, and for a month or so, no one talked or paid attention, but eventually people wanted to help and talk to me. Now when I go to the Gym everyone wants to talk and I just want to workout. It's a routine now in my life I look forward to. before you would join visit as many as you can. you should also be able to find a trainer that will find appropriate exercises for your daughters arms and shoulders. If she is willing, it will become a routine she looks forward too, she will get fit, and she will meet people.
    Yes she uses a manual chair (which I'm proud of her for doing. Despite it being harder) she doesn't like the idea of using a power chair.

    I got her a gym membership in March of 2014 and I know she went a few times but she gave up. I would love her to go back. I can just renew the membership as it's really no problem.

  9. #19
    If she had a trainer at the gym, maybe just in the beginning, she may be more likely to go.

  10. #20
    Quote Originally Posted by hlh View Post
    It sounds like she is depressed. And her isolation is not good...

    Is she seeing her doctors? How often? Does she have a SCI physiatrist? A primary care doctor? Does she like them? Are they decent doctors?

    It upsets me very much that doctors are not better about treating depression aggressively - especially in the early years after injury. It is very common, and normal. Some people are severely affected by it, but others aren't. They are doing studies now showing that treating this depression is important for recovery as well as improving mood/quality of life. At our local rehab center (which is a SCI center) they are doing a clinical trial using the anti-depressant Lexapro in SCI patients soon after injury, with some evidence it may improve recovery..... Here's another clinical trial that was just published and shows a good outcome using Effexor in the famous medical journal JAMA.

    http://www.ncbi.nlm.nih.gov/pubmed/25607727

    Print this out and give it to your daughter's doctors.... and your daughter. Most doctors are sloppy and don't take the time to address it. Sometimes a medication can be a short term (or long term) solution.... especially for a person that has isolated themselves and doesn't have support/counseling/other options. The best combination is a medication AND counseling. But again, the vast majority don't get this.

    Does she suffer from neuropathic pain? There are medicines that help this pain and are beneficial for mood. Effexor (in the trial above) and Cymbalta are two of them. Sometimes people will agree to start a medicine for something other than mood, even if they will refuse it to treat their mood alone.

    And you need to choose your battles, and realize that you cannot (and should not... ) take over her life. Do not mention her changes in her body/atrophy... there are few things more damaging to a young woman's self-image than critiques of their appearance, and I'm sure she is very very very aware. You also are describing normal atrophy considering her injury. Do not berate her for not "preventing this". Do not mention her food choices, exercise, or even cathing at this point. These are less important and will not improve until her mood does. You will only make her feel worse by nagging. Believe me... I speak from experience.

    Support her. Have her over for home cooked meals. Get her outside in the sun (good for mood). And have her meet Bethanny!! I do love the idea of a service dog....

    I'm actually surprised others on this site haven't mentioned medications.

    Sometimes a call to the doctor expressing your concerns is needed, especially if she has mentioned wanting to hurt herself. Sometimes it will be the UTIs/cathing issues or other self-care issues that will at least get you back into the doctor's office so the main problem can be addressed.... so you may need to let those go until she reaches a crisis. Meanwhile, just give her love and support like you have......
    I actually just went out to breakfast with her today and had more of an opportunity to speak with her. She seemed in a better mood today though I could tell she hasn't been sleeping from the bags under her eyes.

    I didn't mean to mention her atrophy or seem like I was criticizing it, I just hate to see her physically deteriorate.

    Her doctors won't talk to me because of her age. I would need permission from her to speak to them. I have called a mental health organization on her behalf before when she was threatening suicide and they came to speak with her but there wasn't much they could do as they as she didn't display enough of the "clinical signs" of a mental health disorder.

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