Well I'm going to to live on my own again. I've tried a couple of times now to move to my own space. Each time, something happened to prevent or delay. I intend to make 2012 the year I move to my own apartment. In fact have already received to referrals to accessible affordable apartment houses. We will see but right now I'm making plans.
Happy New Year to all.
My bestfriend was just diagnosed with MS.she lives in PA,I live in Boston,I would like to know,besides keeping myself informed about MS,whar else I can do for her & her family or where you could possibly redirect me to learn about this damn disease. Thaxs for all your help, Debbi
Hi Debbi,
It's great that you are learning more to help your friend. It's so scary to be diagnosed with this unpredictable disease. So many things we read about may never happen and just get us more stressed out, something we don't need. (not that anyone does need it... but you know what I mean!)
If you haven't checked out the National MS Society website, there is a section geared toward the newly diagnosed that may be very helpful in educating you about what she is going through... so you can offer better support for her. You can learn and help her family to learn so that she doesn't have to endure the "every possible outcome" to understand more.
Because every person deals with these situations differently, you may want to offer suggestions of how you might help and ask her how she feels about it. Some people want friends and family to do research for them, some don't. Some want to know everything, some don't. You clearly care deeply for her. Remind her of that and tell her that you will be whatever she needs you to be. That in and of itself will likely do wonders, knowing you are there.
There are many other communities to connect with- here, facebook, medhelp, web md- the list is endless. If she is ready to join these communities I'll be happy to direct you more specifically. If she wants to speak to a person who has lived with it for 23 years, Please feel free to have her contact me.
What you're doing is wonderful Debbi. She is lucky to have a friend like you.
Best,
Amy
Hi Debbie !!
I live outside of Boston and have had MS for over 30 years. I am a peer support counselor for newly diagnosed patients,too. Most of my family lives outside of Philly ( small world ) ! First and foremost-have your friend get in touch with the National MS Society ! They are a wealth of knowledge ! While doing my training to become a counselor, I learned that more than 70 % of people diagnosed do not end up in wheelchairs ( which was my first thought when I heard my diagnosis). Everyone seems to have their own "problems "with MS. Mine started with Optic Nueritis (which my neurologist said often meant a milder course.) . I am not on any of the traditional drugs, but, take clonazepam at night for leg cramps and Provigil in the morning for help with the fatique !! ( I'd never give up Provigil--it gets me going everyday !!)
That said--I hope some of this helps and, feel free to call if you have any questions !! M. Sears in Woburn !!
Take Care !!
Polly
Hi Amy, Thanx for the kind words & info. I just feel like i want to run down there & do everything for her.But,thats the way i've always been,which isn't realistic.What I was thinking of was doing is a fundraiser,just not sure,don't knw where to start,would like to get it started then let her in on it.This is all so new to me,i want to do everything I can,it just is all a little overwhelming!!!!Sorry if I;m just rambling.If you could give me any help or direction it would be greatly appreciated.THANX!!!Have an awesome day.Any day ia a good day as long as your smiling!!!!!!!!!!
Thank your for your kind words & info. I just want to fly down there & do everything for her,thats just not realistic!! What I would like to do is maybe a fundraiser.I just don't no where to start,the who's what's where;s.I would like to get it started,then call her & surprise her with ther idea,I know she would loveee it!!!I would do it down in PA,but I thought its for a great cause,& it would make her happy.If you or anyone in the community could help me I would most appreciate it.You can also reach me on facebook(Debbi McGah) Thank You every & anyone that can help me with this for me frien & everyone living with MS. XOXOXOXO.HAVE A WONDERFUL DAY TO ALL!!!!!!!!!!!!!!!!
Hi All who have commented on this post. Because everyone posted as I reply... instead of add-comment, I can't respond to you individually. SO here is the group shout out.
Michael... see your reply above!
Momdukes: It sounds like you are on the right track for exercising your body and your strength in coping with MS. It's good to know what we can do to relax and destress... sounds like you have that covered!
Cathy: I also ride a recumbent bike. Ordered it with Amazon prime (free fast shipping) Here is a similar one. It is ideal in so many ways.
Happy New year to all. I'm blessed to be a part of this commuity at HC. Thanks to all of you~
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My New Year's resolution is to exercise. I know that a big percentage of our population commits to exercising, but I mean something different. As someone who lives with MS, my commitment is to exercise my influence over this disease. I cannot control it, but I have influence. Influence means exercise, diet, attitude and spirit and so much more. It is not important that I do more than somebody else does. The only thing that is important is that I do the best I can. Will I be disciplined about it? Knowing myself, the answer is probably not as disciplined as I would like to be. What I am sure of is that I will exercise more discipline in 2012 than I did in 2011…..and that's a good thing.
I hope that everyone will join me and exercise more……. of their influence, that is. Care to join me?
May you were new year be filled with blessings and miracles.
Michael
Hey this is smomedukes, I have not commented in a lonnnnng while
. I want to excerise in fact my pops has a brant new bike to give me......but first of all I cannot get it into my room. I have so much craft stuff (junk) in it but I am getting rid of it little by little to make room for the brand new sit down bike, it will make my legs stronger. I have foun d brand new craft items in this room, but the trash bags are filling up this year is all about purging this mess and making my stronger. So I am with you when it comes to working out. I am getting it two ways, prugin this room and working on this bike! Happy working out!
Sherry/smomdukes
Hey this is smomedukes, I have not commented in a lonnnnng while
. I want to excerise in fact my pops has a brant new bike to give me......but first of all I cannot get it into my room. I have so much craft stuff (junk) in it but I am getting rid of it little by little to make room for the brand new sit down bike, it will make my legs stronger. I have foun d brand new craft items in this room, but the trash bags are filling up this year is all about purging this mess and making my stronger. So I am with you when it comes to working out. I am getting it two ways, prugin this room and working on this bike! Happy working out!
Sherry/smomdukes
Hey, momdukes!!!!
Just curious, what kind of bike is it? Do tell! Interested for myself. Good luck with it.
What kind of crafting? I love knitting - it is what I do (mindlessly) to "de-stress" myself. I'd be interested in what you do.
Happy and Healthiest of New Years!
Cheers -
Cathy
Hi Cathy it is so good just to be back, I do so many different crafts, I know you have herd the old saying, "jack of all trades, master of none" lol lol lol. Let me begine, I have to Criket machines, and a I do not know you all iot, I think it sil screens, it is new never been used, but I crochet blankets, needle points, make cards on my computer, make candles, frame photos, have a book bindingmaching in here somewhere also, I have loads of stamps you name it, so you see I am sell equipped.
sherry/smomdukes
Wow, momdukes - so many crafts. How much fun!
But I am curious - for myself - what kind of bike are you getting?
Hi Cathy, am not sure as to what kind of bikethqt i is but it is cool. You can sit and ride it. My broters got it for my mom shge used it b/4 she passed and it really helped her becasuse she could not get out to walk anymore as her alz. progressed. But I love my crafting it keeps the mind busy. My husband gave me a mini notbook for Xmas so I carry it around with mr all the timne and I have a Kindle so I read all of the FEWW books I can (I am cheap) lol lol lol
in my mind it slowws the thinking part of MS down lol lol lol lol 
. But now I am working on cleaning tis room up too much stuff. I am just going to get some garbage bags and just throw out not gonna look just throw out if I look I will save too much stuff, I can always buy mo
re, which I will. Have a wonderful new year!
sherry/smomdukes
May I suggest donating it to charity? These are so many ways to donate crafts - especially for children's causes (churches, battered women's shelters, etc) I just had Big Brothers Big Sisters come pick up many boxes of things we were getting rid of. It feels good to pass it along. Good luck with your cleanup, and thanks for your answer.
Wow
Hey Sherry,
First of all, sorry I keep missing you on chat. I usually see you when I'm on my way out in the morning, or when my hands and head are way beyond anything coherent.
I don't make resolutions. Life is too changeable to make promises. What I can say is that I'll try to keep in better touch with my e-friends. I just can't sit for3 hrs a day to read and write email like I used to
. It's even rare for all . . . any of my abilies to be vaguely clear enough to be writing to ya'll.
Anyway, just do the best you can at everything you want to do - that makes the feel GOOD and happy.
Happy Hugs,
Maris