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Everything posted by Rachel

  1. It is sad indeed. I have been praying for the families and friends of those affected. May they find comfort and peace in the midst of this tragedy.
  2. This is an interesting article published by Mayo Clinic this month. They have created a new scoring system to assess autonomic dysfunction. You can find the article here: COMPASS 31: A Refined and Abbreviated Composite Autonomic Symptom Score. I am linking to the abstract, but you can click on the tabs to view the full text or the PDF version.
  3. You are welcome to start new threads or reply to an old topic - whichever you prefer! Sometimes there is an article or conversation in an old topic that someone wants to bring back up. Usually a new topic and conversation is created. You can do what you think is best. We're glad to have you here. Rachel
  4. Sorry about that. The poll feature is confusing. Once you have finished creating the poll, click "Finish." The fill out the topic title and post as you would for a normal post. Then click "Post New Topic." This will post the poll as part of the new topic. Rachel
  5. I have a new lift chair from a friend. It has been such a help to me! http://www.cranberryteatime.com/2012/12/a-special-friend-special-gift.html

  6. Ginger, I'm so sorry. My heart breaks for you, and I wish you didn't have to go through this. Know that I'll be thinking of you and praying for you. Do you have a good local support system? I hope that you have family and friends nearby who will gladly step in and give you the help you need. Hang in there, friend. Rachel
  7. Yes, it is operational. It works if you are using Internet Explorer. For some reason it doesn't work with Google Chrome. I don't know about other web browsers. If you use a web browser that won't work with the online form, you can always email staff@dinet.org and we'll get a brochure sent out.
  8. Thanks for the feedback everyone! I currently have a wheelchair with elevating legrests, and I plan on keeping it for occasional use. The problem with it is that it is too heavy for me to wheel by myself for more than a minute on a good day. The elevating leg rests are helpful, but not as helpful as they used to be. I can't sit up in my wheelchair for an extended period of time, so I have to lie down on the floor or in a recliner. Mostly the elevating leg rests just get in the way now, and they make it hard to get in and out of doctor's offices, stores, etc. I do want to keep this old chair, though, for the occasional situation in which it would be helpful. I hope to one day go to the zoo with my family, and the elevating leg rests will be beneficial then. I think I'm going to get an ultralightweight rigid frame with swingaway leg rests. This will be helpful for me to use in my kitchen. I'll take the leg rests off while inside, that way I can use both my arms and legs to move my chair around the kitchen. I think I will go just one inch smaller on my wheelchair width. I'm still debating about what armrests to choose.
  9. Happy Thanksgiving!

  10. Naomi, I have to use a wheelchair because of muscle weakness and insufficient energy. I am able to walk around my small, one story home on most days, although I do often use a walker. I use a wheelchair when I leave my home because I am unable to walk a significant distance or stand in line. I'm hoping to be able to use my new wheelchair in the kitchen to make it easier/possible for me to get food. The doctors aren't sure what type of dysautonomia I have. I was diagnosed with POTS in the past, but tachycardia is no longer a problem for me, and my doctors have agreed that POTS isn't an accurate diagnosis. It appears that my dysautonomia is due to a mitochondrial disease, and I'm in the process of pursuing a diagnosis for this. Corina, thanks for the information! It is helpful to know that your wheelchair is a snug fit but still comfortable. Do you find that the snug fit makes it messier for you in the winter? Do you get snow, ice, or mud on your clothes from the wheels being so close to you? Or do you have wheel guards to protect your clothes?
  11. I am in the process of getting a new wheelchair. I currently have a lightweight folding wheelchair, and I am considering getting an ultralightweight rigid wheelchair this time. My insurance only pays for a new wheelchair every 5 years, so once I get a new chair I'm stuck with it for a while. I really want to make sure that I get just what I need. Do any of you have a rigid wheelchair? If so, I'd like to hear what you like/don't like about it. First, I have a question for any of you who use a wheelchair. 1. How much space is there between the widest part of your hips/legs and the side of the seat? Do you get a chair that is as narrow as possible, or do you get one that allows a bit of wiggle room? Currently I have an extra inch and a half on each side of my legs before the edge of the seat. Then there is another inch or so of space between my seat and the wheel. My OT told me that she thought I could go down an inch or two on my wheelchair size. Another person said that he would recommend the same width seat. I don't want to feel squished in my chair, but if I could go a bit smaller that would make it easier to get through tight spaces, in and out of doctor's offices, etc. Now for more questions: 2. Do you have swingaway armrests? Are they comfortable to rest your arms on? 3. Do you have an angle adjustable back rest or a folding back rest? What are the pros/cons to this? 4. Do you have swing away foot rests? Or do you have a one piece foot board? 5. If you have a foot boad, is it tucked in under the chair a little? If so, is it comfortable? Does it make blood pooling worse? 6. If you have swingaway armrests (or no armrests), do you have clothing protectors between the seat and the wheel? Do these work well enough in the winter to keep snow, slush, and mud off of your clothes? 7. What is the brand and style of wheelchair that you have? Overall, have you been happy with it? Sorry for asking so many questions! I like to be well informed. Thanks for any help you can offer! Rachel
  12. As far as I know there isn't an official color, so it gets confusing, doesn't it?! I have usually seen blue associated with dysautonomia, but you are right that DYNA has red ribbons.
  13. The tweet-a-thon was great fun! Thanks to everyone who joined in. It was really neat to see so many people with dysautonomia get together and tweet for awareness. We may be tired, sick, and/or homebound, but we can still be seen and heard! Naomi, I saw several tweets from you! They went through just fine. Sometimes it takes a few seconds for them to load, and with all of the #dysautonomia tweets at once it may have taken a moment for your tweets to show up on the #dysautonomia stream.
  14. 10 Minutes until the tweet-a-thon starts! See you over on twitter! Rachel
  15. The tweet-a-thon is coming up tomorrow! If you're joining in, feel free to share your twitter name so that we can follow you! If you don't want to share it here, but you want DINET to follow you on twitter, you can send me a PM with your twitter name. DINET's twitter name is @DINETorg My personal twitter name is @cttRachel
  16. After 6 months I am mostly unpacked and settled into our new place. Hopefully in another 6 months the unpacking will be complete. I'm slow, but I'm getting there. :)

  17. Feel free to tweet earlier in the day if that works better for you in your time zone. I wouldn't want to wake up at 1am either!
  18. Dysautonomia SOS has invited DINET to join them in a tweet-a-thon this Sunday, October 28th! Claire has been planning this for many months, and I'm excited about joining in on Sunday evening. We'd like to get #dysautonomia trending on twitter, spread awareness, and thank research centers for researching dysautonomia. Want to join us? Find information about the tweet-a-thon here: http://dysautonomias...nomiatweetathon
  19. I have gotten the flu shot a few times, and I have tolerated it well. My arm is sore for a few days after, but that's all. I'm so sorry you have the flu right now. That's miserable. I hope you'll be feeling better soon. Rachel
  20. Gabe is choosing to do fundraising along with his marathon. People are donating money for him to run, and the donations will be given to DINET. DINET is a nonprofit organization, and although we are run by volunteers, it does cost money to keep DINET going. There are costs associated with web hosting, yearly forum costs, fees for filing nonprofit paperwork, office supplies, etc. There have been t-shirt sales in the past, and the money raised from those went toward making the POTS documentary. We've saved up money to build a new website and revamp the Meet Others program. Once those big projects are completed, it would be great to move on and do more projects! We just have to have money and volunteers.
  21. Gabriel is going to be running in the NYC Marathon November 4th in honor of his father who passed away from MSA. He is using this as an opportunity to raise MSA awareness and to raise money for DINET. You can see his website for the marathon here: http://www.crowdrise.com/fightmsa Thank you, Gabe, for your hard work and fundraising efforts! I hope the marathon goes well! Rachel
  22. I use 3mg of melatonin every night, and this helps me a lot with falling asleep and staying asleep. I've tried prescription pills, which give me a great night's sleep, but they leave me too groggy the next day. If I'm nauseated at night, I have found that a cup of peppermint tea and/or ginger root capsules help a lot with the nausea. Sleeping on my side makes me less nauseated, too, than sleeping on my back. I hope you can find something that helps you. Nausea and insomnia is not fun! Rachel
  23. Haha! Sorry our forum quirks are driving you nuts! The "like this" feature is something that came with the latest upgrade, and by default it is disabled.
  24. We currently have that feature disabled on the forum. There isn't a way for us to remove the "like" button, though.
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