First Mistakes

Monica.TMonica.T Posts: 98Member ✭✭
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When Charlie came home if the doctor or therapist mentioned any piece of equipment they thought might help him in any way at all, Out of a need to help/fix/cure my son, I bought it! A leg stretcher (a piece of equipment that now sleeps under the bed, never used) peanut ball, balance balls, rollers, wedges of all sizes, bands (that we actually use for OT); you name it, I went into debt sending my credit card into seizures buying any item I thought might help my son to walk again.  The most expensive was a $369 plus shipping gait-trainer (never used). My advice to anyone facing that first year - wait! Discuss in detail with your doctor and therapists if any piece of equipment is actually going to be beneficiary or not. It will save you a lot of money in the long run, money that can better be spent on things like purchasing a well seated cushion or other much needed item. Buying stuff might seem to ease the shock and while still in the bargaining denial stage it may seem reasonable to purchase such items but waiting, give yourself time to adjust and accept that there are no store bought fixes.

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  • jaarchjaarch Posts: 47Moderator Moderator
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    @Monica.T Great advice and a tough lesson to learn (I know from experience). Try posting those items you no longer need on Craigslist or Ebay to try to recoup some of your funds or donate them to de-clutter.
  • Monica.TMonica.T Posts: 98Member ✭✭
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    Jaarch, I donated them, we have limited space and I had the physical therapist help find families that needed them. It felt good to give to others, actually helped me in my own recovery process.


  • Monica.TMonica.T Posts: 98Member ✭✭
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    Except for the leg-stretcher nobody wants that torture device LOL
  • Monica.TMonica.T Posts: 98Member ✭✭
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    Dose anyone know of a place to donate unopened unused medical supplies?

    When they changed my son's feeding pump formula we had 3 cases of unopened 'milk' left, along with feeding bags, gauze and sterile swabs. Along with other items.

    Due to health regulations the company can't take them back.

    It seems a terrible waste to throw them out.

    And while it's easy enough for therapists to suggest someone in need of medical equipment, they aren't allowed to find someone to give medical supplies to.

    Thanks.

  • PRCkathyPRCkathy Posts: 18Moderator, Information Specialist Information Specialist
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    Monica,

    Perhaps the resources provided  by Feeding Tube Awareness can assist:
    https://www.feedingtubeawareness.org/medical-supply-and-formula-exchanges/

    Kathy
  • CatfurrCatfurr Posts: 1Member
    First Comment
    Some of those items would be useful for your local animal rescue or shelter 
  • WAGSofSCIWAGSofSCI Posts: 212Moderator Moderator
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    @Monica.T
    When my husband was first injured we did the same thing: we did a fundraiser, spent hundreds of dollars on all the small equipment and tools - went to rehab in California at the best facility we could find. I wanted my husband to know that money was not an issue and that we would do whatever it took for him to recover to his best ability. When you're in the new stages of a life changing injury the shock itself makes you make emotional decisions. I think now looking back that all the little tools, bands, small pieces of equipment were not worth it as there is too much to do in real life to use it all regularly. The only thing we found worth it was going to rehab in California at a specialty spinal rehab clinic (Project walk at the time, now called Adapt). Here we tried out ALL the equipment available to SCI patients - including gait trainers, FES bikes, standing frames, blocks, bands etc etc. We got advice from some of their trainers based on their expertise and years of training clients. We then learned after a few trials what was worth purchasing for home use specifically for my husband, but also, what type of equipment we WOULD use regularly and what mattered the most. For him, the things he uses religiously are his FES bike, and standing frame (for bone strength and muscle mass retention). All the other stuff like bands and smaller devices he didnt end up using specifically because we just do not have the time left in the day to do all these specific exercises and stretches. I can totally relate to you! This post is going to be so useful to someone with a new injury. Do the research. Ask the experts. Try the important stuff out yourself before you spend the money. Its worth the leg work (literally) and will save you tons of money in the long run. - Brooke (WAGS of SCI)
    Your WAGS of SCI
    (Elena and Brooke)
  • Mnichols23Mnichols23 Posts: 35Moderator Moderator
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    @Monica.T  my parents did the same exact thing when I was injured. At the time of my injury I was 17 years old so my parents made almost all of the decisions in regards to me, my injury, or anything that can possibly help me. I’m very fortunate and blessed That my parents are incredibly caring it supportive but there was a lot of fundraising done for me as well. Pretty much all of the equipment that my parents bought me is just collecting dust in my house. Things like the RTI Bike, standing frame, rotating mattress, etc.   I admit that most of these things I should be using and are very good for my health then I’m a very stubborn 23-year-old.  I know they bought it for my best interest but it wasn’t my interest. Many parents do like you did and mine by splurging on anything that could possibly be helpful in anyway. I think one thing that will prevent this is actually this forum itself. If anyone that’s newly injured sees these mistakes they may not make the same one
  • Monica.TMonica.T Posts: 98Member ✭✭
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    Catfurr  Thank you! That was an awesome idea! They are even sending someone to pick up the supplies, when I said we have boxes of sterile gloves and swabs she became so excited she actually squealed LOL
  • Monica.TMonica.T Posts: 98Member ✭✭
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    PRCkathy Thanks ever so much! Finding an organization to take the feeding supplies will mean so much. :)
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