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Found 4 results

  1. WiserRanter

    Camptocormia

    I have been diagnosed with Camptocormia ( bent back syndrome ) recently and having a hard time doing what I used to do caring around a rollator and a cane. Finding information and people besides medical terms has been difficult if not impossible. Only found two people and neither one will talk about it. I have a mild case of CP but that has never really been an issue until now and it gets in the way since being diagnosed with Camptocormia. I also have venous statious in my legs and have to be careful not to even brush them up against anything. Add to that being diabetic also with a weight problem because of inactivity. I am looking for solutions to the Camptocormia as meds have not worked and trying the botox injections again coming up in a few weeks with a new Doctor. Also looking or starting to look for some kind of brace that might hold me up if the botox doesn’t work or does not work fully. Found a brace support system but they have not found a producer for the manufacture of them yet so hanging in there for that to happen. Suggestions or comments welcome……….
  2. Hi all, My name is Adam, and I am a mechanical engineering student at Lehigh University, which is located in Bethlehem, Pennsylvania, USA. I am currently working with a team of undergraduate students on the redesign of a walker, and we are looking to users to help us understand which everyday problem is greater: standing up and sitting down from chairs, or getting over architectural barriers such as curbs and stairs. If you know someone who has used or currently uses a walker, I would appreciate you passing this survey along to them, or to anybody who has worked closely with this population. It should take less than 1 minute to fill out. https://www.surveymonkey.com/r/WW96GPN Thanks!
  3. BryanMaloney

    Non-crap walker

    My father is moving in with me as soon as I can get a new place. I have noticed that his walker is a total PoS when it comes to Parkinson's. It looks like what you get when you say "How would I design a walker to kill people with PD?" He has to lean forward to use it. It's on very easily-rolling wheels. It has hand brakes. GAH! I would not be able to come up with a worse design intentionally. Leaning forward? Bad. Wheels that let someone leaning forward just fall immediately? Stupid! Hand brakes that require gripping firmly WITH GREAT RAPIDITY in order to slow or stop yourself should you start to lose balance? WHAT ARE THESE IDIOT DESIGNERS THINKING? It's not just PD. If I wanted to kill anyone with any sort of difficulties with upper body strength or balance (aka nearly EVERYONE who gets old enough or otherwise needs a walker), that is exactly the design I'd come up with. Something that would instill false confidence and then slide right out from under that person with no warning. So, are there any non-crap walkers? Or is there anything like feedback sensitive wheels that could be installed? It's not that difficult a concept. If the wheel suddenly starts to accelerate beyond a certain amount, the mechanism would generate friction to SLOW the walker, not abruptly stop it. My father suggests an eccentric internal flywheel-like mechanism to do the trick, but neither of us are engineers.
  4. Hello. Well, here I am. Still up at 3AM knowing that there isn't anything I can do but learn to live with this disease. I was so angry and so frustrated that I flung myself to the floor and threw the biggest, loudest and most unsightly temper tantrum. Any two year old would have been proud. About 10 years ago I noticed that my memory was slipping. Little and (big) things like what day it was or renting the same DVD six times because I thought I hadn't ever viewed it before. Then about 5 years ago I started having trouble with walking. It felt like my feet were just too heavy and I struggled to just keep up a "normal" pace- pick em up and put em down. Then 2 years ago, my ring and pinkie finger on my right hand felt numb and cold on the outside but the bones in both fingers felt like frozen steel and hurt bad. Maybe I slept on that hand? Nope it didn't go away. But instead was joined by the ring finger on the left hand wagging and making tiny circles all of the time. 2yrs ago that's when I weighed 159 lbs and I went to my Dr. Passed on to Neurologist who had MRI done and then another MRI with contrast. Blood work. Tagged with Bilateral Tremor and treated with Klonopin -1x a day. Had check up 6 months later weighed 135 lbs with both hands and all fingers shaking and twitching Dr. upped Klonopin to 4x a day. I saw the Neurologist a few more times and was told as long as the Klonopin was maintaining it's "hold" they weren't prepared to say it was Parkinsons. Meanwhile, I needed to have surgery done by Urogyno. Hysterectomy, bladder mesh, etc. Surgeon would not operate until he got a letter of clearance from Neurologist. Surgeon said that if I have Parkinsons he would need to use different method to put me under. Neurologist gave him the clearance letter. Surgery was April 3, 2014. Surgery went fine. But I went into full on Parkinsons within 6 weeks. Stuttering, freezing, falling, fainting, tremors, cannot swallow REALLY SCAREY and I now weigh 91 pounds. I am on carbidopa-levodopa, amantadine, temazepam, clonazepam, Colace and my thyroid replacement med levothyroxine. I use a walker. My 80 year old mother gets my groceries, pays my bills, gives me a bath and dresses me, feeds me. I cannot drive, open a water bottle, button or zip clothing. My right arm is frozen against my upper body bent at the elbow as if to shake your hand. It really hurts all the time. My right foot is the one most likely to freeze and send me falling face first if I try to shuffle without the walker. And constipated OMG I hate it, hate it, hate it! All of it. Not just what is happening to my body but to lose control of every aspect of my life. And so darn fast. On April 3, 2014 I had bilateral hand tremors. Then was diagnosed with full blown Parkinson May 28, 2014. I don't know much about "rate scale" but mine is 4-5. Someone told my mother 5 is end stage. How can that be? I got a call from Behavioral health at 8:30 am. She wanted to do a phone assessment of my mental stability. First question was - are you depressed? I managed a stuttered FFFFFFuuuuuuu. That's when I had my all out, throw down, crying, twitching, pity party of a tantrum. Are you depressed? Seriously? Ok, if anyone reads this I want you to know that I am a fighter and not about to give up. I have an appt. with a Parkinsons Specialist the 8th of July and I know that I'm only on 2 Parkers meds. There are all kinds of treatments and combo meds to try. I know this. I want to thank NPF for providing this forum. I needed to vent tonight. Thank you so much.
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