Conjunction junction, what's your function?

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EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/5/2009 8:59 AM (GMT -6)   
Hi ya'll,
Does anybody remember that from schoolhouse rock? I am interested in finding out about everyone's functional ability if you care to respond. After 18 years in with my MS, I can stand for very short periods and only walk around my home. Any outings require a wheelchair. I am also interested in others upper body functions. With spasticity, tremors and weakness in my arms as well as my legs, my arm abilities are also severely restricted and I wondered if anyone else's MS affected them in their arms, which leads to a whole host of upper body problems, and if so, do you treat upper body symptoms any differently than lower body symptoms? Any input would be greatly appreciated as I am finding it difficult to table dance when I can't use my arms or legs to get on the table or shake my booty!!! Ha ha!! yeah

Hope ya'll are enjoying the same beautiful weather that we are having here in NC.
GO TARHEELS!!!!!!

Peace,
Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 4/5/2009 9:41 AM (GMT -6)   

Hey Elizabeth,

This is a great thread!!  I hope you get a lot of responses.  I am not a real good one to start but I will anyway.  I have very high level of functioning.  I have only had this disease for a few short years and I was blessed to have gotten a diagnosis very quickly and I have responded well to copaxone.  I have chronic vertigo and balance problems. Nothing seems to change that.  I have tried lots of different things, believe me.  My limbs are all very strong (after some grueling PT) and I maintain that with a pretty serious workout routine.  None of my limbs are perfectly corrdinated.  I drop, spill, toss, kick stuff all the time.  I am able to work full time.  I have cognitive issues (executive function, focus and attention).  I have visual tracking problems.  I have some issues with fatigue but I also push it a lot!! I have constant/daily bowel and bladder problems.  Then there is the whole host of issues that come with numb feet.  I have to check them constantly.  I am sensitive to the heat. 

I manage all this with exercise and supplements.  I get plenty of rest.  I work on keeping (esp. the legs) muscles strong and stretched.  I do use baclofen for the spasticity.  I use adderall for the cognitive junk and it also helps a bit with the fatigue. I manage the bowel and bladder junk with cranberry extract, lots of supplemental fiber and dietary fiber.  I know my limits and for the most part I have learned to compensate for most situations. 

 

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/6/2009 12:53 AM (GMT -6)   
Hey hot woman,

My MS is concentrated on the left side though the drs love to point out that the right is getting weak as well, though they do not say there is anything that I can do about it. Who asked them for their negative input anyway?? Prior to getting the baclofen pump my left leg was as stiff as a plank and doing anything was nearly impossible, Now, I have baclofen in pump which means less spasticity (yippee), no pain (yippee yi).

This means I can sit at computer and chat to all of you :) and do work for my husband (boring), and can go out driving & doing shopping etc. But baclofen has made me weaker (specially on the left side) & I find standing in queues makes me shake, & walking even little distances (with a cane) exhausting. I used to think that exercise and diet helped but I don't know now & find it really difficult to do the exercise. Left hand is really weak which affects typing and makes putting pressure when holding fork very difficult. But I do know that I must try to keep doing as much as possible as I have definitely found that if I stop doing anthing (cos it is too hard) then I find it difficult to restart, ever. I do not have the spasticity & tremors in upper body just weakness but I feel for you cos I find the upper body weakness more difficult to deal with than the leg.

I use walkers at home. I have 4 as I live on the side of the hill and have one on each level & one for the bottom garden & one for top garden. I find them great to carry things and they help my balance. I hardly fall now, last year before I was using them I fell several times a month & in one year broke both shoulders & cracked ribs on both sides (all in separate falls). Also I can sit on them if I feel tired, at the sink, the ironing board or when gardening.

I am lucky that my cognition is not affected though my memory and word recall has definitely deteriorated.

I love driving cos I feel normal & love the speed. Zooooom. smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/6/2009 8:54 AM (GMT -6)   
Thanks Gretchen and Speedy aka Popsie for your input. It is very helpful. Gretchen, I had a very high level of functioning like you for about 8 years in. I have never taken disease modifying drugs as they were not around and when they were available I have chosen to not use them as I prefer, as I have mentioned before, the natural route. Meds and my body just do not work. For the past 10 years my functioning has greatly changed as I am at this point home bound. I do have vertigo and balance issues which come and go, severe weakness in all four limbs as well as the spasticity, my cognitive issues come and go and are mainly focus, attention, and occasionally an inability to speak. Fatigue comes and goes as does occasional bladder/bowel problems. I have recently begun having issues with sensitivity to heat as well as numbness, tingling, itching and pain in my feet as well as RLS. I do Yoga and Tai Chi for exercise and flexibility everyday without fail even during major flareups when it makes my flares worse but in the end is better, I take stool softener which really helps with the bowels, I do a great deal of meditation/relaxation techniques which helps with the spasticity, I am very limited physically and have learned how to keep moving around those limitations which is the best advice for anybody with MS. Speedy, sounds like that Baclofen pump has been your saving grace!!!! I am so glad that you are able to be as mobile and functional as it sounds like you are. I am not able to type at the computer myself, I dictate to my wonderful husband who God bless him has turned hen pecking on the keys into an art form!!! smilewinkgrin I lost the ability to drive about 4 years ago and yes you are right the upper body weakness is much more difficult to deal with than the legs. Due to my upper body weakness and its severity and the fact that the weakness has gone up into my neck and jaw I have been unable to chew for about 10 years and must blend all of my food. Talking can also be a real problem on certain days. I will say that the loss of driving has been my greatest challenge so far to accept as I, like you, felt normal and LOVE the speed!!!!!! Sounds like we have a lot in common!!!!
But even with all the issues, I continue to be so grateful for any upper/lower body function and still enjoy my life so much even though my journey is not at all what I expected before MS. I am so thankful for you guys taking the time to talk about yourselves and I am so glad we can do it in a positive way!!!!! Negativity breeds negativity and none of us needs that!!! :-)

Take care you wonderful women!!! Gretchen, keep up with that workout routine no matter what and Speedy, next time you are out driving, roll down the window, stick your head out and give a big
YIPPEE for me please as you are zooming down the road !!!! yeah

Take care ya'll,
Elizabeth
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 4/6/2009 8:11 PM (GMT -6)   
"Hot" woman,

Just typed a long post to you and then lost the whole thing. Damm, hope I can remember what I wrote. Firstly, I think you are wonderful coping with so many issues & staying so upbeat!! I also have throat issues with a tendency to choke & now voice weakness and difficulty in projecting my voice.

Secondly, hello to your marvellous and very special man. smilewinkgrin

Yesterday, I was tired and a bit negative about diet and exercise - I find I can't exercise when I have been out. Today, I am my usual pathologically positive self. I do think diet is very helpful and I seemed to lose the dreadful fatigue when I improved my diet. Hot flushes seem to improve if I can exclude sugar and reduce fruit intake. Exercise is definitely beneficial so try to keep doing whatever you can manage. I sort of force my typing and it comes and goes. Sometimes its lickety spit then other times it just fades away. So I rest it a bit and then just try to keep going as a sort of exercise. I also sit on a Swiss ball when watching TV and do exercises for my core. I have done my 200 steps on my stepper today which is small and cheap and definitely strengthens the legs. Apparently, when people are going to go on long hikes this is what they are told to do to get in training. I hold onto the window strut when I use it.

I absolutely believe in meditation and self hypnosis. I have had very very very positive results. I visualise electric blue light remylinating my brain/spinal cord. I send it down the arms and into hands & into every neurone renewing every cell & I find doing this and holding it for long enough to get a buzzing in the hands has definitely improved the dexterity in the hands. But I find I need to do it twice a day & of course I waste time tidying, cleaning etc. I am also working on the throat at the moment too and think there is some improvement though, of course, I find I do not get quick results it takes time. I am sure you could show me the way I think you are a star to meditate with the spasticity. I found I had to stop for several years cos I could not sit or lie without pain and never really managed walking meditations though I know that the monks do ! Have only been able to meditate again since the pump - it has really has given me my life back as I had such pain/spasticity that I could not move and I did not know how I was going to continue.

I will definitely take you with me in spirit when I am out driving, moonroof down sun & wind blowing through our hair. Hang on tight

smilewinkgrin smhair turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 4/11/2009 10:47 AM (GMT -6)   
Speedy,
I am totally hanging on and can definitely feel the breeze blowing through my hair, thanks for taking me along for the ride!!! If I can help you with any of your issues, do not hesitate to post or e-mail me.

Take care,
Elizabeth aka Hot Woman yeah
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***

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