TIPS FOR LIVING WITH SM/CM

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Re: TIPS FOR LIVING WITH SM/CM

Postby lovingwife » Sat Sep 18, 2010 12:27 am

Thank you for the great tips!
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Re: TIPS FOR LIVING WITH SM/CM

Postby judyg » Sat Oct 02, 2010 8:26 am

bump
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Re: TIPS FOR LIVING WITH SM/CM

Postby pfb1977 » Sat Oct 02, 2010 3:20 pm

I have to work about 50 hours a week and I have sm. It is very hard but a must as I am in management. I highly reccomend (if you can afford it) to hire someone to clean for you. I have someone come every 2 weeks to sweep, mop, clean tubs, vacum etc. I sleep most of the time when I'm not working so i don't have the time or energy and it hurts me to do these things.
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Re: TIPS FOR LIVING WITH SM/CM

Postby lovemyskyes » Sun Oct 10, 2010 11:45 am

bump
-- CM (1st Surgery/July 1999 - 1 cm) (2nd Surgery/August 2006 - 2.5 cm)
-- SM (July 2003 - C4 shunt surgery)
-- Syrinx from above C1 to T9
-- Arachnoiditis, RSD, DDD, EDS, blah blah who cares...
-- Spinal infusion pump due to spasticity
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Re: TIPS FOR LIVING WITH SM/CM

Postby artgirl » Wed Oct 13, 2010 2:27 pm

Thank you so much for gathering all of this information~ especially for us newbies! i learned a lot!!!
what are the medical alert bracelets supposed to say. it seems that even doctors don't know much about SM. what other information needs to be included? are EMT's going to know what it is & protect our spines/necks/heads?
~madison
syrinx~bottom of C4 to top of C7 6mm wide..spinal cord buldge & herniated disk @ C5.
lyme dz & mycotoxicity
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Re: TIPS FOR LIVING WITH SM/CM

Postby blackberrybunny » Sat Nov 13, 2010 7:14 pm

BUMPING to remind us all to take it easy!

Thanks, OP--these suggestions are great. I really need to heed the one that says DO NOT BEND OVER! This is my downfall-- I still do it, and come up to standing position and usually burst out in tears and sobbing. It's just hard to me to raise up on my legs if I squat now because they are weak.

If you have SM, and weakness in your legs, how do you get back up? Sometimes I get down like this at the store to get to the bottom shelf, and it is embarassing, the strength and struggle it takes me to get back up. What do you guys do? What helps?
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Re: TIPS FOR LIVING WITH SM/CM

Postby SarahEllis » Sun Dec 05, 2010 2:13 pm

Great Info! So I guess jumping on that trampoline we're getting the kids for Christmas is out. :cry:
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
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Re: TIPS FOR LIVING WITH SM/CM

Postby SarahEllis » Sun Dec 05, 2010 2:16 pm

blackberrybunny wrote:BUMPING to remind us all to take it easy!

Thanks, OP--these suggestions are great. I really need to heed the one that says DO NOT BEND OVER! This is my downfall-- I still do it, and come up to standing position and usually burst out in tears and sobbing. It's just hard to me to raise up on my legs if I squat now because they are weak.

If you have SM, and weakness in your legs, how do you get back up? Sometimes I get down like this at the store to get to the bottom shelf, and it is embarassing, the strength and struggle it takes me to get back up. What do you guys do? What helps?


I have that problem too, getting back up from a squat. I usually grab on to what ever is around me or I put one knee down and take it slow.
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
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Re: TIPS FOR LIVING WITH SM/CM

Postby wendi » Tue Jan 18, 2011 3:36 pm

Bump ditty Bump, Bump.
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: TIPS FOR LIVING WITH SM/CM

Postby syrinx48 » Tue Feb 01, 2011 9:19 am

Bump
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Re: TIPS FOR LIVING WITH SM/CM

Postby June » Fri Feb 11, 2011 12:25 pm

Bump
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Re: TIPS FOR LIVING WITH SM/CM

Postby mikala210 » Sat Feb 12, 2011 8:54 pm

Lisa85 wrote:I can't get my best friend to understand what I'm going through. She thinks I've given up because I can't do all the things I used to do. She's a nurse so I thought that she of all people would understand. Not so much. She just can't seem to wrap her head around the fact that even if I could find a surgeon who would say yes to surgery that I would still have all of these restrictions. Not having her full support hurts the most. I feel like I'm losing her and I don't know what to do about it. She's been my rock for 17 years. We've been through so much together, but with this I don't feel like I can talk to her because she just says suck it up. she just doesn't get that there is no fix for this. Maybe I should take her to talk to my neurologist like I did with my kids. I don't know. What doesn't kill us makes us stronger....but I am so tired...and feel so alone.



Lisa,
My best friend did the same thing. She had back surgery several years ago and still thinks I am faking. I was only having minor symptoms until i fell down a flight of stairs because of ice. i know i am uncoordinated to begin with....i should have left it alone....but she sees me walking slower, wearing my sunglasses indoors, chopping my usually long hair short, avoiding as much stress as possible, and making sure i am the only one who drives (because i know all the roads in a 3 county area), and she did some of the same things. when i told her she said i was a hypochondriac and even when my Dr. (and family friend) told her, she thought i had told him to tell her that. i have been best friends with her since i was 5. i turn 25 next month. you are not alone. my mom and sister seem to be the only one who believes me. My boss can't wrap his head around it. I just got the all clear from cervical cancer in December (fought it for 3 years) and now this. I have a Chiari. my boss when i told him immediately started doing research, he wanted to know what to expect and I actually had my regular Dr. call him and talk to him and tell him about it. With her being a nurse, sometimes they deal with it with their patients but they don't think it will EVER happen to their friends and family. She might just be in denial. Just sit her down with some coffee and tell her even if she doesn't want to believe you, you still need her support because she means so much to you. you never know, it might work. keep your chin up. my son and my therapy pup keep me going.

Rhonda,
i love the list...but one thing, i have a 3 year old....sudden movements are part of my daily life. lol just sitting on the couch is like being on a roller coaster. :mrgreen:
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Re: TIPS FOR LIVING WITH SM/CM

Postby tnglitter » Sat Feb 12, 2011 11:58 pm

If we only had a nickel for every time ........... It's SO frustrating, I know. No sudden movements with a 3 year old at home - yeah right, like that's going to work..... :roll:

I want to thank everyone for keeping this list going and on the board for everyone to read. Especially the newbies. I know when I was looking for specific info at the beginning of this journey, it seemed like there was no ONE place to go to get advice. Tips were scattered all over the internet. I'm so very glad that this list has helped so many people out. And you all should be very proud of keeping this up and adding your own tips. I've learned a lot from this post too. I LOVE YOU GUYS!!!

Rhonda
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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Re: TIPS FOR LIVING WITH SM/CM

Postby karenb » Tue Feb 22, 2011 10:49 pm

Bump

BTW, House-cleaning was one of the first things my Neurologist ordered me to stop (equivalent to climbing ladders & step stools, & heavy lifting). Of course, the heavy lift and no-step-stool rule, along with the limitation on lifting more than a jug of milk (plus being newly moved & trying to unpack) made assistance a necessity. On a good note, my housekeeper is a close family friend and was able to help me several times through illness and surgery (with light stuff like laundry, breakfast, a pot of tea, etc.).

Karen
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Re: TIPS FOR LIVING WITH SM/CM

Postby syrinx48 » Fri Mar 18, 2011 10:58 am

bump
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