TIPS FOR LIVING WITH SM/CM

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Re: TIPS FOR LIVING WITH SM/CM

Postby marymac » Thu Jun 04, 2009 2:25 pm

Hi Ho Rhonda:

You're the best: I LOVE YOU and all you do for all of us.

Real smiles
Marymac
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Central disc herniations C5-6 and C6-7, extensive syringohydromyelia cavity throughout the cervical & thoracic cord (large syrinx from C6 inferiorly.)

"Every day is a gift: Thats why it's called the Present"
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Re: TIPS FOR LIVING WITH SM/CM

Postby tnglitter » Sat Jun 13, 2009 2:30 pm

Thanks to all the "bumpers" for keeping this up in my absence for everyone to add to and help others.

I've been extremely busy with everyday life details, alimony court (coming up next week), and trying to deal with my mother (who is increasingly becoming more unstable in our relationship...who knows what's going on there?).

Will be posting more soon....

Thank you and 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

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Re: TIPS FOR LIVING WITH SM/CM

Postby jfreema » Wed Jun 24, 2009 9:15 pm

Thanks for all the great tips!

I have 3 of my own tips to share - all having to do with something worth buying if you can afford:

I finally broke down and invested in really good speech recognition software for times that I couldn't use my arms well to type. I'm not sure if it's still the same but the license on mine is by user, meaning I can use the same software at work and at home. It's section 508 certified for the workplace disability management needs. http://www.nuance.com/naturallyspeaking ... sional.asp This software has saved me many a time with work things and home things. Everything you say, it types for you.

Also, I highly recommend microchenille sweaters in winter if your arms burn. I've bought a few for the last two years, made by Colorado Clothing. I bought mine at Dick's Sporting Goods. They are warm and very very lightweight.

The third, if your arms hurt, use a handsfree headset for your telephone.

My dream is to buy an electronic toilet seat - you press a button to wash yourself with warm water and another button to blow dry. I can't offer this as a tip because I've never tried one! They have them in motels in Japan, though, and they're now sold in the US, too. I'm saving my coins right now until I can buy one.

I'm really not as materialistic as I sound - All of these things were bought after I realized I wasn't doing well using what I had. I haven't regretted buying any of them. Very helpful.
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: TIPS FOR LIVING WITH SM/CM

Postby debh » Tue Jul 28, 2009 7:05 am

I just made the choice and ended a relationship-one of the best decisions I have made in my life-now everything else does not seem so bad!!!! My situation is the same-minus a man-but my perpective has changed -less stress-I can say I am basically happy-I reconnected with the man above-I started to pray everyday-help others more-and taking steps to get my financial situation in order-I fear less of the future and trying to live in the moment- :roll:
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Re: TIPS FOR LIVING WITH SM/CM

Postby catlewis » Tue Aug 04, 2009 4:49 pm

Silly question for you all.....why are people writing "bump"?

cat
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Re: TIPS FOR LIVING WITH SM/CM

Postby wendi » Wed Aug 05, 2009 8:07 am

Writing bump, or anything, bumps it up to the top.

Wendi
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 jfreema » Sat Oct 10, 2009 2:20 pm

If you are female and have burning pain in your arms and want to stay warm without wearing anything heavy, Dick's Sporting Goods is selling the Colorado Clothing micro-chenille sweaters again this year, in 4 colors. I found them yesterday and bought mine for the winter. They wash in the washing machine and tumble dry with no problems. They're ultra lightweight and soft, soft, soft. It's about the only thing I can wear now without my arms feeling scraped.
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: TIPS FOR LIVING WITH SM/CM

Postby Sarah in Paradise » Fri Nov 20, 2009 1:20 pm

bump !

One thought /reminder too = now that the cold of winter is here == consider cashmere as a help for the sensative skin = and chill prevention measures .

With acm /ms and eds = this has been the BEST measure I've found in years and years to lessen the pain /cold impacts --preventing the full chill impacts is HUGE in my bigger daily picture , and it's become much easier to sense /recognise i'm getting a bit chilled / or starting into true discomfort that lasts hours after it should seem gone -- just layering UP ahead of really getting cold = has proved a VERY big pitfall to avoid !

I find cashmere is no longer expensive , and check thrift stores , (ebay for specific garments such as pants or yoga pants which make GREAT long john layers and OR to look for older garments made with the thicker yarns at discount store prices ) ,== I purchase mens sweater sizes much to big for me at the thriftshops -and sew /remake them over into long johns ect . in little time /effort . To do so = just stitch a double line of stitches along the area you wish to cut /resew -and then snip between the sewed lines = the stiching keeps it from unraveling :=)

Sarah in Paradise
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Re: TIPS FOR LIVING WITH SM/CM

Postby brightspot » Tue Dec 08, 2009 9:10 am

Holy crap - I want to kiss the person who came up with the rice in the sock, heat in microwave for two minutes, thing. Who invented it?? It was like instant relief!! My head still hurts, but my neck and shoulders feel about a thousand times better. Oh, I thank God for all of you...this is amazing!
~*~*~*~*~*~*~*

Brightspot - Awareness = Research = HOPE!!
Chiari Malformation Type 1, 7mm. Diagnosed: 11/9/09, Endoscopic Decompression: 3/16/10
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Re: TIPS FOR LIVING WITH SM/CM

Postby phyrehawke » Sat Jan 16, 2010 11:45 pm

I guess this is a tip for mostly cervical SM, but really for anybody who is going to have chronic severe neck problems. My husband is a big fan of trucks, but one day while I was having therapy he left to take his truck for an oil change and came home with a used Cadillac sedan...to make travelling easier on my neck. :o I wasn't sure at first how much difference it would really make, but it's turned out to be a HUGE positive difference over the past several months. And since it was used it was really no more expensive than your average new car, but probably twice as gentle a ride as most of the new cars I've been in. The payments are actually lower than they were for the truck. I highly recommend it.

Looking back, I'd say I had zero business pulling myself in and out of that truck, or braving the stiff suspension as it bucked through the potholes and speedbumps. My docs were talking about putting me in a hard collar for vehicle travel. The truck was never giving the inflammation a real chance to resolve, so I didn't realize what kind of an impact it was having on my overall pain level until it was totally out of my life.
Anyway, I thought this was worth mentioning for anybody who has a really difficult time travelling.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: TIPS FOR LIVING WITH SM/CM

Postby blady1971 » Sun Jan 17, 2010 11:29 am

To all who have contributed to this post, I want to say a huge thank you! I was just diagnosed in mid December with CM. I was honestly thinking the doc was going to come back and say it was MS. When he said CM, my husband and I just looked at each other with looks on our faces of "What just happened?" So we both started trying to find info about it. I had visited a lot of sites, but none of them has been as helpful as this site has been.

I think I have learned so much more from you all and this site, than from all the site combined I had visited. As someone fairly newly diagnosed I had tons of questions and still have more, but his post is a great guide to life. I would like to add something that I learned actually before the diagnosis. It is about driving, I know with my CM, I get very dizzy easy and my vision will blur or double. I had been driving up until September and a dizzy spell the vision blurring and I ended up on a sidewalk. No damage done, but it could have been bad had there been someone walking. So I made the choice to stop driving completely. This can be a pain at times, but I rely on my husband and family members to get back and forth to places. For the motion sickness, I do not look out the windows at all. For me it makes it much worse. I have found that if I have something in the car with me to look at and don't look at the motion, I do not get as sick.

I am always trying to push more to be able to do things I think I should be able to do, and I do end up paying for it. So I am going to print this off and live by this. Again thank you Rhonda and everyone that has taken the time to help others (like us newbies) with a wealth of info. It really helps!!!

Beth
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Re: TIPS FOR LIVING WITH SM/CM

Postby razzle » Sun Jan 17, 2010 5:32 pm

blady71 are you going to have surgery and did you see Dr. Pritz on the 20th
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: TIPS FOR LIVING WITH SM/CM

Postby blady1971 » Tue Jan 19, 2010 7:51 am

I see him tomorrow. I will post with the outcome. I am hoping he is a god doctor, but if not, we are ready to make the trip to either Cleveland or Chicago.
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Re: TIPS FOR LIVING WITH SM/CM

Postby lori1218 » Sat Jan 23, 2010 9:34 am

Hi....

Great info..thanks.

Are the tips for post PFD surgery as well as pre op??? I know this is probably a stupid question!!! Sorry.



Lori
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Re: TIPS FOR LIVING WITH SM/CM

Postby dimi1 » Tue Feb 16, 2010 3:34 pm

where can you get a medical ID bracelet
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