This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone,

I have not been to active on here for a while, so I'll give you a brief:
DX 10 years with RRMS. Still fully functioning and working FT. Fatigue is becoming a problem (which I am being treated for with modanifil AKA Alertec). Single mother of 6 year old.

I am currently 10 years into a career which requires me to do a lot of report writing, data analysis and planning. Unfortunately, the cognitive changes I have experienced in the last 3-4 years have affected these specific areas and it is almost impossible for me to do my job well. My clarity in thinking in this constructive, creative mode is very short, and requires a HUGE amount of concentration, which is also largely gone from the MS.

I equate my ability to think now to someone with ADHD. Short bursts, unpredictable. My short tern memory is not reliable. My organizational and planning skills have gone to the dogs, and I struggle to set priorities. I am constantly feeling lost and spend a LOT of my time backtracking, trying to figure out where I was with a project or paper, and where I had intended to go with it.

I have worked for my employer off and on for 9 years. They are aware of my DX, but it has not impacted my career too much until now. I recently finished a contract with the manager I have worked for since being hired, and after a few months of unemployment I am now working under a different manager, who was unaware of my DX and hired me specifically for the skills (writing, statistics etc) that are most impacted by MS. I am just coming up to my 3 month review and end of probation. I know my performance has been lacklustre, but regardless of how much effort I put in, I just can't do any better. My new manager is accomodating me as he can, but I doubt he can find work that suits my abilities at my current pay level.

Obviously I am horribly disappointed. I am in a career I LOVE, and just finished my Masters (while working FT). Cutting down my hours will not fix this, I have tried. So what I need is some advice, or stories to help me go about re-focusing my career. Has anyone had to do this? Is there somewhere you can go to get an assessment, or help planning? I cant go back to school FT, I have a daughter to care for and bills to pay.

Please, any advice you can give would be GOLD.

Thanks!

No advice really other than some sympathy. I have the same problems as you cognitively. Physically I run, jump, skip whatever...you would not know I had MS but cognitively I am a mess:( Who knew this disease could affect the mind like this. I didn't....If I had known I obviously would have decided not to have it;)

When I faced a similar situation several years ago, it helped that my doctor had a record of neuropsych exams in my file that showed a decline in my cognitive abilities over a 10 year period, and it also helped that the company occupational services nurse was aware of my situation and had tried unsuccessfully to help me identify work-related compensation that would allow me to remain competitive in my position. Eventually I had to file for long-term disability to protect my income, and the support of the company nurse and my neurologist were essential.

I had spoken to several of my managers over the years about these worsening problems, and was surprised to learn that these conversations and my concerns did not become part of my formal work record that would help protect me from lay-off. The company nurse was an essential piece in my case.

The combination of cognitive weakness and physical fatigue can make finding an ideal job very difficult.

In my case, work has not been possible, I occupy my time with small house-hold chores, some volunteer work at a local nursing home, short dog walks, plenty of rest and exercise, etc. I miss being a productive member of a team, but I don't miss: (1) the stress of trying to compensate for health issues, (2) the awareness of my declining ability to contribute, and (3) the fear of losing my house and support for my family.

In my case, the disability package provided by my employer was a "life-saver". I keep my fingers crossed.

Good luck.

--Tracy

_________________
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user

I think you need to keep on marching forward with that job because once you let the illness get you you will deteriorate even faster. Try your best, and take it one day at a time. I really don't know of any help but I wish you the best; I believe that most of us are in the same boat.

I can certainly relate to your situation. My last job was as an assistant curator at a regional archives on the Outer Banks in North Carolina. I was frequently tired and at times could not focus. I also had to deal with a lot of politics and bureaucratic garbage which did not help matters. It was honestly a blessing in disguise that I left that job!

That was four years ago and I was diagnosed in 2009. I have not "worked" since my last job and I'm in the process of reinventing myself. I'm also on disability, which has helped tremendously. The DX was a good excuse for me to focus on things I want to do such as writing and creating an eBay business. Both I can do from home and they don't require me to go to an outside office.

Since you do writing and stats, you may be able to do some of that at home. Some employers are agreeable to that. Best of luck to you!

Sympathy here too but like the suggestion about not giving up unless there is something else you truly want to do.

I'm a dental hygienist, and since I started working full time again due to financial issues, Ive noticed a decline in the strength of my left hand, and that presents a problem since I'm left handed. I also have noticed poor balance affecting me most at times when I cant lean a patient all the way back and I have to stand to work on them. I just noticeably lost my balance the other day and I was so embarrased!! i just cant rely on my left leg for support anymore. Some days are worse than others, thats for sure. And when I get a patient in the chair who hasnt had their teeth cleaned in a year or more, well, I just want to cry.. I am there as well, and I certainly can relate to your problems. All I could say id utililize your lifelines, like occupational therapy, cognitive therapy, etc.. You're in my thoughts. Everyone of you.

OH no. You guys are scaring me to death. I'm currently a full time student working on an associates to move on to a BS in biology. After reading your posts, and knowing I have huge cognitive issues, I'm scared I'm setting myself up for failure. School is incredibly hard having attention and memory issues but I struggle through it. I seem to feed off the emotional stress it causes. Maybe it's a distraction from real life. I don't know. I don't want to give up. Am I hoping to high? I want more than anything to work with animals and zoology is the best route for me to get where I want to be. I have to stop worrying.

MS may (and i emphasize MAY) take things away from you over the years, please don't let the monster take your HOPE.

i have not read anywhere in the MS manual that states that pwMS cannot work with animals. so i say go for it. you may have to work harder or take longer cause of your condition but you can do it.

you may also want to talk to your profs about your condition. they should make exceptions to accomodate you.

good luck

Scaring you is the last thing we want to do! Since you have cognitive issues, I would first get a psyc/neurological assay done to determine where your weaknesses are. I had one done in January and though not surprising, I found out my processing speeds were more compromised than I thought. I also had (still do!) difficulties with speaking and not being able to get my words out. The good news is there are things you can do to improve things like memory and processing speeds. Emotional stress can definitely be problematic. I found out after seeing a speech therapist that I carry a lot of tension in my face and also tend to spit out my sentences quickly when I'm under stress, making things worse. Slowing down and relaxing often seems to help.

Don't give up! Since you're working on your BS, you may be able to find someone at the college/university to help you with the cognitive issues. Just a thought. No pun intended!