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pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/16/2006 11:40 AM (GMT -7)   
I'm a respiratory therapist and have not been able to work since June due to imbalance and cognitive thinking problems.  I tried to find a job away from the long hours at the hospital, but it seems that a respiratory therapist with a cane is definitely not in demand.  I try to keep everything "light" and have a humorous outlook as it helps to control my anger over the disease, thus my name "Pegleg" tongue short for left leg acting like a pirate's pegleg at times).  My specialty is Asthma Education and Management, but in my area, there are no positions available that aren't in the hospital and entails long hours.  Does anyone have any suggestions on imbalance and disruptive cognitive thinking?  I received info from MS Society on cognitive thinking, but it hasn't helped much on regaining my ability to think fast in a crisis or that matter, much of anything. I read over the internet that there are exercises that can help with imbalance.  Does anyone know of such exercises and have the exercises helped in any way?  Because I lost my balance twice and fell in the last week and half, the neurologist moved my appt up to Oct 21st.  But because the appts aren't that long, I'm trying very hard to have all my info prepared because it is so difficult to get these appts.  It is so nice to be able to correspond with others who are going through or have been through the same problems.  Thanks for being there! yeah

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/16/2006 11:59 AM (GMT -7)   
Hey Pegleg

Cute name! Welcome to HealingWell and to the MS board! I'm so sorry u've found u'rself in need of this board, but be sure we'll all do all we can to support and help where we can.

I'm sorry that i can't tell u anything to help with the cognitive issues or balance probs. I did try a med for balance issues called Diamox (generic is Acetazolamide). It only took me less than two weeks to decide this wasn't good for me. It made me so sick and really sleepy. Of course the balance issues could've been better, but how would i know if i was sleepy? I only have slight bal probs...a few times a day and doesn't interfere with daily tasks. Sounds like u'r probs are much worse. When u say cognitive issues, do u mean memory or otherwise? I have plenty of probs with memory, but they come and go as far as the intensity. In general i use cymbalta and it seems to help overall with symptoms such as numbness, tingling, stinging and the list goes on. I don't really feel it's helped with the memory tho. Are u taking anything for symptoms at all now? Please forgive me if u've already said in another thread.

I really hope u get some relief soon. On u'r work probs, have u considered a teaching position possibliity? I know, that's not what u may have pictured for u'rself, but maybe it's an option to consider to be able to incorporate all parts of u'r life now as it is. I hope this all works out for u and u'll be back doing what u want very soon.

rhonda

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 10/16/2006 1:54 PM (GMT -7)   
Welcome to Healing Well!!

A sense of humor is very important! It seems to help keep your spirits high!

I can't offer any help with the balance problems as I am not dx. I did find a book that has a ton of info in it on many different problems with MS. It is titled "Multiple Sclerosis The Questions You Have The Answers You Need".

The MS chapter that I have in my town offers different exercise programs so you might want to check that out. You can also look at the YMCA in your town to see if they might offer any programs.

As for cognitive problems, have you tried learning something new? My hubby bought me a used piano. I have always wanted a piano and to learn how to play one. After I got the piano I started reading how to play on the internet and printed out a lot of free sheet music. I sit and play every day now. It has helped me tremendously with regaining my memory and even with my hand eye coordination. You don't have to get a piano but maybe you could learn something new. Like how to crochet, use a sewing maching, learn how to paint or make doll houses!! Anything that requires your mind to think!!

I wish you lots of luck in finding a job that is less demanding. I hope some of these suggestions help.

Lysha
When everything's coming your way, you're in the wrong lane.


TiaJoy
Regular Member


Date Joined Sep 2006
Total Posts : 59
   Posted 10/16/2006 3:01 PM (GMT -7)   
There is vestibular therapy that is suppose to help with the dizziness. The exercises do make you very dizzy but the idea is that your body will get use to it and learn to balance yourself out. I went to a few sessions during the time I was going through the tests to be dx. Your doctor could refer you if you felt that the therapy can help you.

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/16/2006 3:22 PM (GMT -7)   
Thanks for the reply!  I'm limited to the new activities to learn.  I have a large keyboard, but can only play with my right hand now.  My left side is still numb,tingling, and just doesn't seem to keep up with my right side.  I tried puzzles, but quickly lost interest, so I've started using my medical terminology flash cards from college to hopefully jumpstart my brain again without having to put a lot of thought into each word.  Some days are better than others.  I refer to the times when I can't think of a word as "Missy Moments" because I'm certainly missing my thought pattern!  Putting a name to everything seems to really help, even if it's a silly name. tongue   I stepped away from my grocery cart the other day and when I turned to place my food into the cart, I couldn't remember which one was mine.  Boy, that was embarrassing!  Especially since I had my purse in the cart and didn't even recognize my purse.  I think the most embarrassing time was when I tried to open my front door with my car remote.  I kept fussing to myself that I needed to buy new batteries since the door wouldn't open.  I bet the neightbors thought I had a little too much of my nightly glass of wine! tongue   Living on the Gulf Coast with the heat and humidity must have really gotten the best of me that day.  This is one time I'm looking forward to winter.  Again thanks for all the input and it's nice to talk to someone about MS.  We have no support groups in my area.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/16/2006 5:12 PM (GMT -7)   
Hey Pegleg

I'm somewhat on the gulf coast too...around Laurel, MS. U anywhere nearby?

rhonda

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/16/2006 5:58 PM (GMT -7)   

Hey Rhondab:

I'm in the D'Iberville/Biloxi area.  Heard of any support groups here?  If not, maybe we can start one.  I know a couple of hospitals that would accommodate a MS Support Group Meeting.

 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/16/2006 6:26 PM (GMT -7)   
Hey Pegleg

Wow...u'r not too far from me at all! about 2 hours. U there during Katrina?

I don't know of any support groups. I haven't even looked up the local ms chapter since i'm un-dx'd. I'd follow Lysha's advice on that one...the local ms chapter, ymca or as u said, local hosp. I"d bet there are lots of folks in u'r area who'd love to meet and share. I'm sure i'd like it very much, but don't feel just right about something like that since i'm not dx'd.

rhonda

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/17/2006 9:05 AM (GMT -7)   

Dear Rhondab:

What symptoms are you experiencing?  My symptoms occurred off and on with a lot of time lapse inbetween for certain symptoms, but I was misdiagnosed.  It took something like Katrina to cause a full blown exacerbation.  I couldn't keep my balance, words and routine things I did on my job as a respiratory therapist were totally alien to me (I thought I was losing my mind!), I would look at the list of patients I had for the day (many times around 25 with seeing each one at least twice in a 12 hr time span) and not know where to begin when before I just jumped right into my routine with time to spare inbetween pts to work w/other pts on asthma mgt.

I didn't have to work this hurricane at the hospital, so we left as soon as I got off work on Sunday night.  Still ran into heavy wind and rain on our way to Montgomery.  We returned on Wed when they allowed us into the area.  I couldn't believe the devastation and although we were a lot luckier than some, my house was a complete mess.  The east wall came down and a lot of wind and rain came into the house.  The only rooms that weren't damaged were my son's bedroom, the bathrooms and the kitchen area.  I could stand on my patio and look into our attic (our house is 2 stories).  But I felt very lucky compared to all the horror stories and deaths that occurred.  We are like others and still trying to finish putting our house back together.  Working in a hospital setting prepares you to handle a lot of stress.  My husband is learning to handle my MS a little better.  He still jumps everytime he hears a lot noise as he thinks I've fallen again. 

My problem is that I am a retired Navy wife and used to being totally independent.  Even when I was young, I was the mother of our groups.  My husband was gone most of the time and I learned how to work on plumbing after a snowstorm, work on the car when it wouldn't start, and even dealt with a stalker who would call and tell me what I was wearing and when I came home. Having MS has taught me a lot about patience and adjustments.  I can no longer run up and down several flights of stairs, but I am thankful that I have to use my cane only occasionally (I need it around objects), I still feel comfortable shopping or running errands alone.  It may take me a lot more time than usual, but at least I'm out there.  When routine things become strange to me, I try not to become irritated, I simply try to make a joke of it (like "Boy! Will I ever be prepared for mindloss when I become old! tongue ).  The simple things like birds singing and the colors of nature around me mean so much more and the materialistic belongings don't seem as important.  I worked on Oncology and the pts taught me so much in understanding what life is really about.  It's too bad that it took MS to make it really kick into meaning.

Even if you haven't been diagnosed w/MS, still log onto all the sights as the info is great and you will be more prepared for future tests and MD explanations.  Just remember to keep it light and each day doesn't seem so bad. yeah


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/18/2006 3:49 PM (GMT -7)   
Hey Pegleg

I'm really sorry it took me so long to reply. Been kinda busy! I'm glad u guys weren't at u'r home during the storm. It was a horrible time. We didn't sustain too much damage. Just lots of trees down and some out buildings either damaged or destroyed, but no real damage to our home. Our biggest loss was all our food (freezers) and of course living in the outside due to it being too hot inside without ac!! We went two weeks without water, power or phones (including our cells!) and that was really hard, but far less than very, very many others.

Yes, if u'r very independant it's gonna be hard to slow down and accept that u may need help with things u've always done or found ways to do on u'r own. I'm somewhat like u in that i do many of the things people just don't think i can do. As they say, where there's a will there's a way. That goes for now too. Even if u have ms u can still find ways to do things and remain independant. That will does come into play and u WILL find a way. Who needs to run up the stairs anyway??...enjoy the elevators and the destination! Sometimes we find that when we change the ways we do things we find new and special things along the way that maybe we missed before, just because we had tunnel vision and were focused on the things we do...and in doing them.

My symptoms pretty much follow the 'list'. I started out with some minor numbness that vey quickly spread over my body and even into my throat (VERY scary!). As that was all happening i began to walk drunk and have a lot of trouble standing up straight. My memory has always been bad, but it's just so much worse now than ever before. That comes and goes in a way tho, as do many of my symptoms. I find myself sounding like a record in slow motion sometimes or just saying something that makes no real sense. Again, comes and goes. As u say, there have been long lapses in between, altho i didin't realize that was what was happening at the time. I had a hysterectomy in Jan '05 and never could recover from it. I had this horrible fatigue and just absolutely felt bad all the time. Not sick, just down. No energy or life in me. Since then it's been downhill. I've had three mri's (two brain and one neck...i think!) and all the other tests short of an lp. My docs (first neuro and second opinion neuro) don't feel it'd be worthwhile to have the lp right now. I 'passed' all my tests and am sitting here undx'd. I do keep a log of my symptoms and am sure that's why my neuro ordered another mri (had to cancel and haven't rescheduled yet). Anyway, many many probs, but no answers. I could prob go on and on, but i won't. :(

I really hope u'r find some answers to u'r work situation. I don't work, but know if i did now i'd prob have already lost my job. Not that i'm so bad off. I'm not. I just don't know how anyone deals with even the little bit i have and holds things together as they all do. So many here are so very sick yet so very strong. Kudo's to u all!

rhonda

pegleg
Regular Member


Date Joined Oct 2006
Total Posts : 257
   Posted 10/18/2006 4:08 PM (GMT -7)   
Rhonda: Thanks for reply. I haven't been able to work since June 06. Applied for Disability (have other problems ... didn't consider them problems, just annoyances), but heard so much negative stories about Disability. The counselor at Soc Sec stated that I was definitely qualified for it, but you know how that goes. I think the waiting is what really drives me crazy. I'm so use to knowing what a problem is and figuring out the solution. I had no idea that sometimes MS has no solution. Oh well, I seem to take a lot of realty breaks now (listening to birds, etc) ... what really matters in life ... and try not to let things get to me ... not depressed, just mad. Hope u had a good day! Thanks for the listen.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/18/2006 4:54 PM (GMT -7)   
Hey Pegleg

Hang in there...it WILL work out for u, just takes time...sometimes an AWEFUL lot of time! ;) Yes, i'm familiar with how slow disability is. My brother in law is VERY disabled and still it took almost a year to get his paper work and such completed to help him. U'r doing the right things tho...slowing down (whether u want to or not!) and enjoying life such as it is. No, ms really doesn't have a solution...just little fixes along the way, but it could be worse...we could all be going thru this alone..but we're not. ;)

rhonda
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