Help! I've fallen again and I can't get up - MS Australia

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LET‘S TALK CHRONIC DISEASE, CHRONIC LONELINESS MS, like other disabling diseases, can be the cause of great loneliness. My greatest fear is that I may lose the ability to drive that enables me and my wheelchair to get out of the unit and go and meet people, whether it be shopping, Rotary or work at the MS Society. This fear is however mitigated somewhat by the knowledge that I can, by the use of the Internet, still maintain contact with people. Through MagScene Zanna and I almost daily hear of PwMS who are confined to their house and suffer from CHRONIC LONELINESS. We also know of those who, after some trepidation regarding the technology involved, have taken to the Internet and now have friends from all over the world that they talk to daily. Loneliness has disappeared to a very great degree! We also know that many PwMS are still not on the Internet and are not able to share in the many benefits it can offer. We are not sure of the main reasons that prevent PwMS from using this marvelous tool. In order to help us to determine these reasons and hopefully enable us and the Society to help you could you please complete a small survey for us? Since the last MagScene the following PwMS have indicated they would like a “local” webpal. Coded Reference 432 Male Age 44 Lives in Sydney Years with MS 15 Major issues are severe muscle spasms or twitching, particularly at night. Have tried most medications, herbal, acupuncture, Chinese herbs, steroids and am on Rebif trial that has run for last 3.5 years. Still working (at home), I still drive and am fiercely independent. I walk with cane in a funny, unstable way. Interests are/were snow skiing, abseiling and squash. Wish to discuss issues and any solutions to the twitching. Coded Reference 433 Female Age 58 Lives in Sydney Years with MS 5 (officially) I spend a lot of time at home so computer is one of my main interests together with reading, cryptic crosswords and word games. I swim 4 times per week, which helps the MS. Limited ability to walk but still drive, thank goodness! Married, no children, husband is librarian, hence unlimited supply of books. MS symptoms are weakness, stiffness, hypersensitivity and some pain. All in the legs. Have been on Betaferon since 1996, a godsend! Coded Reference 430 Female Age 27 Lives in New England Region Years with MS 4 I would love to talk to anyone with MS, but especially those close to my age. I am married with no children (? maybe in the future). I work fulltime and enjoy many hobbies when I can including gardening and going to the gym. My view on MS – enjoy life and take it as it comes! Coded Reference 434 Female Age 50’s Lives in Sydney Years with MS 9 Use walking stick and scooter. Still drive, work part time and live as single. Enjoy my computer and Internet, sewing and cross stich, some gardening, armchair travel (unless a miracle occurs and I can really travel), languages and relaxation. Coded Reference 431 Female Age 38 Lives in Central Coast Years with MS 17 Originally from Scotland. Married with two children (nearly 13 and 10), working as lab tech _ days per week. Diagnosed with breast cancer 3 years ago. Chemo seemed to knock the MS on the head. I’d like to hear from anybody that can come up with an exercise program for some one who doesn’t like exercise and has a busy life. Coded Reference 435 Female Age 49 Lives in Sydney Years with MS 25 Although I have had MS for a long time I do not take any of the available medications and yet still do remarkably well. I have a daughter 26, Travel Consultant, married and living in Canada. Son 29, Computer Technician, Super League Ice Hockey Player, You might say “I’m a proud mum”. Would like to meet new people and live. 10 MAGSCENE – INTERCOMMUNICATION FOR PEOPLE WITH MS – NEW SOUTH WALES
Coded Reference 436 Female Age 53 Lives in Central Coast Years with MS 1.5 I enjoy being at home but I would like to correspond with PwMS. Hobbies are gardening, crosswords and computers. Coded Reference 437 Female Age 61 Lives in Sydney Years with MS 14 I’m married, 2 children and 3 grandchildren. I have very weak arms and legs, can walk around the house, but need wheelchair or my scooter outside. My dog likes “walking” with me and the scooter. On good days I love playing the piano and reading. I have lost all sense of smell and taste – has someone out there got the same problem? have been on Betaferon, but gave up, and am now on Copaxone. I would love to talk to other PwMS. Coded Reference 438 Female Age 53 Lives in Orange Years with MS 30 I have been on Betaferon since 1966, am a part time user of a wheelchair, walking stick, walker and any furniture I can grab hold of. Interests are cooking, outdoor life, reading. sewing, spending time with my 4 grandsons and trying to keep my husband/carer’s bum from touching a cushion. I like being a “Coded Reference” If you wish to email any of the PwMS listed please send an email to garrya@msnsw.org.au quoting the coded reference number only. I will then send you their email address so that you can contact them directly. We do not list email addresses in MagScene to prevent them falling into the wrong hands e.g. crackpots, email marketers etc. Good Olympic watching. ✁ MINI INTERNET SURVEY First Name …………………………………… Surname Postcode …………………………………… …………………………………… Why aren’t you on the Internet? You may choose more than one of the reasons below. ❑ ❑ ❑ ❑ ❑ Don’t have a computer Can’t afford it even if I wanted one Have a computer but can’t afford a modem or the Internet cost Need help with setting up the computer to access the Internet Don’t have any interest in learning this at this stage - even if I get lonely Please cut out and send to: Garry Anderson MS Society PO Box 1246 CHATSWOOD NSW 2057 Thank You Email without the Internet Elsewhere in this MagScene I talk about the problem of finding an Internet Service Provider (ISP) that is not an STD call away. This can be the case if your town is not a large one and no ISP has a Point of Presence (POP). One of the major benefits of the Internet is email and it is not widely known that you don’t have to be “on the Internet” to use email. Telstra has a system which enables any of their clients to receive and send emails through the telephone. All you need is a computer that matches or exceeds the following specs. Widows 95, 486 processor, CD Rom Drive, 16Mb RAM, VGA monitor, mouse, keyboard, 9.6Kbps modem, 30 Mb spare hard disk space and a phone line with Telstra as your provider. Further information can be obtained by calling Telstra on 13 21 25. Garry Anderson MAGSCENE – INTERCOMMUNICATION FOR PEOPLE WITH MS – NEW SOUTH WALES 11
Page 1 and 2: SEPT/OCTOBER 2000 VOL. 10 NO. 4 Int
Page 3 and 4: Today is a gift FRIENDSHIP Eleanor
Page 5 and 6: MS Is Not The End of Life Life was
Page 7 and 8: Letters to the Editor Dear Zanna, J
Page 9: TELECROSS SUPPORT SERVICE The Red C
Page 13 and 14: Hunter Region News Social event of
Page 15 and 16: COUNTRY REGION SUPPORT GROUPS There

Help! I've fallen again and I can't get up - MS Australia

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