This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By jodes335
Is anyone working with OT? I'm finding I will have to go back to work soon. I'm dreading it and I'm going to try but my symptoms are a problem. I applied for disability but it is going to take too long, I can't wait any longer.
I was working part time when I was diagnosed with OT in 2009. I continued with that for another 18 months, but found I was getting more and more fatigued, so finally resigned. I found as the fatigue grew worse, I was getting more clumsy and would walk into door frames and shake whenever a work colleague walked near me, even though they all tried to keep out of my way. As my work was secretarial, I could sit more than stand, but that didn't really make any difference. I must add that it was easy for me financially to retire as my husband has a good job. That means I do not qualify for any disability allowance.

Good luck and try not to stress about it as that will make your symptoms worse.
By golfnut
I work - I run my own consultancy company with one employee. Have no problems really, but it's mostly desk work. Only situation that is a bit problematic is meeting new clients and the greeting situation - standing about. Or conferences and seminars. I usually just mention a "balance- or leg problem" and ask that we sit down, works fine most of the time.

I'm sure there are many jobs that would be difficult to manage with OT, I just want to give some positive input and say; it can be done.

Good luck!
the nut
By irish4411
I also was I your difficult situation. I was working in a job that required me to stand all day which we all know is all but impossible to do. I went on vacation and was not able to return. That was June 2014. I went on a leave of absence hoping to return to work but I hired an attorney to fill out the paper work for me to file for SS disability. It does take awhile but the wait is worth it. You won't get paid for the first 5 months they deem you disabled however they will pay you retroactively for anything after the decision is reached. My husband has a good job and that had no bearing on my case. I got my approval letter in March 2015 and will be eligible for Medicare Dec 2016.

Hopefully this is helpful. :P
By admin
>Hopefully this is helpful. :P

very helpful, it's a difficult situation for many people, thank you for posting your experience.
By jodes335
Thank you all for your experiences. I am a nurse and plan on going back to bedside nursing. Will try to hold on till I can maybe transfer and get a less strenuous job.I will try working and see how it goes. A new adventure thanks again.
By gloria
Jodes, please keep us posted on how you are doing with your new adventure. That kind of information is helpful to all. Thanks, Gloria
By jodes335
hello everyone, here is an update on my adventure of working as a nurse with OT. its like playing hide and seek. lol, its just alittle difficult to hide the tremors and now I have them in my arms and hands. well I did a good job until other health problems came my way and I had to be hospitalized where I work. .i just get tired alittle more easily but have been able to keep up with the rest of the young ones. I do find myself sitting whenever I get the chance. I am seeing the stress/tired factor influence the tremor severity. I remember standing up probably for 10 minutes in orientation and felt like I was going to fall so I just started walking. another time I was starting an Iv and my legs were shaking like crazy, not from starting the iv it was from the OT, I just took a chair and sat. the patient didn't notice. with the Neurontin i'm on which is a low dose I understand, the doctor wants me to take 300mg three times a day and no way, i'm telling her once a day and I was confused. i'm not really being offered anything else at this point and will probably follow up with someone else.i am happy though that I was able to go back to work and will work as long as I can, some days are worse than others but for me, its the best. btw the neurologist who diagnosed me and I asked her if OT was a "rare" condition and she replied "no". I asked if she had other patients with it and she said yes. most doctors do not know about this condition, they have no idea so at least I was able to give some info to a few of them at my hospital. good luck all.
By gloria
Jodes: Thank-you for your update on working as a bedside nurse with OT. It is a clear picture of the way you are working around some of the physical challenges of OT and [quote: i just get tired alittle more easily but have been able to keep up with the rest of the young ones. ] Look forward to your future postings as well as the experiences of OT friends in different vocations..........experiences that might help others. Gloria
By snickers
I too am a nurse ,and was officially diagnosed a few years ago.
I was working in a clinic setting ,doing wound care, in a new job,when the legs started to tremor with such rapidity that I had to back up (with sterile gloves and all ) and lean against the wall.... The poor patient was more worried about me than himself! I had to have another nurse finish the dressing.that was the realization for me I could no longer do bedside type nursing. The universe had made the decision!
I am semi-retired, and now work in remote communities as a visiting home care nurse. This year I am home for 6 weeks and work away for 3.
I adapt my work...pull up a chair to change a dressing, lean against walls.,
It seems that the modifications I employ are subtle, and most people are unaware of my sitting.leaning behaviour.
Not quite ready to hang up the stethoscope.!!! :)
I have not accepted any medication regimes.....Medications may modify symptoms,but don't resolve the cause, and I am well aware of the many side effects that may occur.
By gloria
snickers: The best news is you are [quote] Not quite ready to hang up the stethoscope.!!! ] You and all others reporting are setting a standard of coping for all living and working with OT ......... look forward to continuing postings !!!!! Thanks, Gloria
By jodes335
hello everyone, still working, not easy, but i do what i have to do to get by. i pull up a chair many times during my shift starting iv's, charting, etc. i tell my coworkers i have OT. Not one has said they were aware of it, most doctors dont even know or they confuse it with orthostatic hypotension. i have sweating episodes, shaky legs, hands. i do not in anyway feel that it impairs me from doing my job. it is very,very challenging. i am exhausted after doing two 12 hour shifts. i will continue to work till i cant anymore. not on any meds as the only one i could be on was neurontin and as i wrote before it made me confused. i occasionally use cbd and medical cannabis to help with pain in my back and legs. it also helps with tremors, depending on the strain. my legs are cramping and i can hardly get out of my car when i get back home. last week our floor was full and i had no chairs i could borrow from empty rooms so it was really painful, i went into the lounge and took one out and used. i have no shame, i will not stop till i cant do it anymore. the only thing that bothers me really is the sweating, its something i cant hide. i tried the Embr personal thermostat, its a watch like device that with a push of a button can cool you off or warm you up. it kind of worked. i didnt like the bulky feel of it but i will use it or a small fan to help me. just an update. thank you

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