So I work at a grocery store and am a little slower cashiering and bagging, etc. About a month or so ago there were two incidences where my coworkers said, “you are slow” in a deroggatory manner infront of the customer. Naturally I got mad, and was told by a friend and several others I need to tell my manager. So I did, and because I told about the incidences I basically had to tell some about me having this disease.
I have felt really off balance and I have lost my balance there. One guy stopped me from falling. So I have wanted to cut my hours back while I work at home and also work on physical therapy and going to the gym. And since the time of my coworkers bulling episode I’ve had a bad attitude about work. I’m wondering if I should cut back some hours for a few weeks cause all this is hard for me to handle…that’s why I get bold or attitudinal with my coworkers?
Has anybody dealt with this? How long did you take off? Or how long did it take for you to reach acceptance stage of this?
I t ook early r etiremen t as the a taxia has affe cted speech,keyboard skillls and co-ordination.I took early retiremen t in my 4o's as I couldn't mee t deadlines or bear the stress.Best thing I ever did.Now I have just got finances and Ataxia to worry about. I thought it would be fairer on colleagues and t he chilldren I taught.
I am still working on the acceptance stage.I thik it depends on your age and how the ataxia has afdfected you.
I was happy to giv e up a job with lots of deadlines but you don't have to give up on e very job.I realise it is not very easy to get another job but all jobs are not the same.You don't want deadlines and the str ess of working with the public and Ataxia at thee same time .I worked for a further 6 years in a diffe rent job and loved it.You willl know when it'ss time to give up or change.There is no set time as all the Ataxias are different and affect us in different ways.
My fiance had a similar situation. In the end we decided it was best for him to concentrate on taking care of himself, and things at home. It has helped him both emotionally and physically. Though I do worry about him not socializing with too many people.
I'm dealing with the same issues. I have SCA3. I am very unbalanced, experiencing brain-fog and fatigue and an ever-increasing number of symptoms. I'm thinking about cutting my hours back to 4 days a week, before I go ahead and fully retire. I'm concerned about losing social connections too. But I really want more time to take care of myself - go to the gym, walk and exercise more. Working full time is too much - I'm falling asleep on my ride home (I commute 2 1/2 hours a day), I'm arriving home too exhausted to cook - I just want to sleep. And, excuse me if this sounds too selfish - I'd like to enjoy my life a little more before things get too bad!
The few coworkers who know about the ataxia are very supportive, but they don't work with me directly. I'm worried that my supervisors will not be.
Quitting work has its plusses and minuses. Yes, you get to work on youself but also to (this is bad) focus on yourself almost excusively. I have a relatively mild case of ataxia but I could no longer see myself functioning in a work environment (without a supportive boss, which I did not have.) Turning fast, quick note taking and quickness in general--- it just wasn't happening. Nevertheless, I think the absence from my job has hastened a degree of depression. I was in a high stress job but a low stress job is what I might need. I should add, that my firm was downsizing to begin with, and that just finding a job in today's market with today's ageism, isn't a simple matter. So if you are functioning to some acceptable degree and can bring in your boss on the matter, then try to see your job as a form of therapy.
I appreciate the feedback and the advice. I think working 4 days might be a good solution. Maybe I will never need to retire early if I just cut back a little. But in order to do that, I have to explain why to my supervisors - maybe it's about time anyway. I'm really stressed not only from having SCA. but by pretending I don't!
neta said:
Quitting work has its plusses and minuses. Yes, you get to work on youself but also to (this is bad) focus on yourself almost excusively. I have a relatively mild case of ataxia but I could no longer see myself functioning in a work environment (without a supportive boss, which I did not have.) Turning fast, quick note taking and quickness in general--- it just wasn't happening. Nevertheless, I think the absence from my job has hastened a degree of depression. I was in a high stress job but a low stress job is what I might need. I should add, that my firm was downsizing to begin with, and that just finding a job in today's market with today's ageism, isn't a simple matter. So if you are functioning to some acceptable degree and can bring in your boss on the matter, then try to see your job as a form of therapy.
hi there - sorry dont know your name - I am wondering whether if you have a good employer you will feel better to have this condition out in the open - for example many employers have policies about employing disabled people - do you consider yourself disabled and would your employer be supportive if they considered you a disabled employee? Would your co-workers understand and be more kind and supportive if they knew about your condition rather than seeing you as not pulling your weight as it sounds like they are doing now?
I had a difficult time at work and gave up a year ago - lo and behold I am much improved in every way so I think the stress of trying to cover up my condition (which is very mild fortunately but was affecting my concentration which made it hard at work), along with the tiredness with driving 90 minutes a day and working full time, were all taking their toll.
I would say be open if you think you will get the support, get occupational health involved if they have such a thing and if you can afford to, cut down your hours as you will undoubtedly feel better for it!
I’m going to cut my days down to four. Management knows a little because coworkers were bulling or harassing me. I work with teens and young adults a lot. The older adults usually are nicer. I told management to stop the harassing, but told them to not tell others about my health. Maybe I’m still in denial, but I don’t want people knowing. I want them to see me as normal.
Since the harassment and telling management I’ve been really stressed. I’m looking for another job as grocery store work is a challenge for someone who is light headed a lot, and has some difficulty with speech. I’ve got a bad attitude about the place, and my coworkers negative attitudes makes it harder.
Lori
I think getting more rest and having less stress has to help.
A large part of my job is public speaking. Most people tell me they can't hear any difference in my speech but I think they are just being kind. My doctors and my speech therapist can hear it. My speech is slower and sometimes not clear enough. And I often feel like the words are stuck in my head and I just can't find them. I forget names and thoughts and generally feel like my presentation skills are faltering. It has made me not accept more important engagements since I don't want to mess it up.
Best of luck to you - it sounds like your employers may be very supportive since they have seen your struggles.
I have been slowly cutting back. I have been retired from teaching for 8 years now. My symptoms started way back, but have gotten much worse in the past four years. As a very active person,, I have to face what is important to cut back on.. I can't do exercise classes, or take walks. I have cut back with volunteering for things at church. I only drive locally. I've had to hire cleaning ladies as I just can't vacuum, etc. Now that my speech is slurring, I have to remove myself from committees. It is just too embarrassing to listen to myself speaking. I have to give up gardening, or do things in small bits.
I think cutting back in stages is a wise idea. You decide when you have to make changes. I think it comes to you as a brilliant idea at times. You ask yourself, why am I struggling with this? You will know when it is time.
Dear Lori, I give you TONS of credit for continuing to work with ataxia! I continued to work full-time at my job for three years after my diagnosis. As time went by, my ataxia symptoms really started to effect the quality of my work, as I was having trouble key-boarding (on the computer), writing, walking, and my speech was becoming very slurred (not good for talking to clients on the phone or in-person). Plus, I had a lot of deadlines, and stress is not my friend! Anyway, my supervisor was aware of my ataxia from the time of diagnosis, as I told her. Therefore, I retired, as I was approved a medical retirement due to my ataxia. In terms of acceptance, I'm a work in progress...,ha! I was diagnosed eleven years ago and my ataxia has progressed. With the constant changes, I have to keep re-inventing myself. I try to keep a positive attitude as that helps. I also exercise for strength and balance. I may have ataxia but ataxia doesn't have me! ;o)
A few months after I had become no longer able to mask my symptoms from people and I had only known I had this disease for about two years myself and I was still thinking {still am} this is huge, I cant tell anyone about this, so I just stopped going to work. I know that it was the wrong thing but I just keep thinking of all the things I used to do and I am not dealing with ataxia well at all.
Hi I’m sorry to hear that I’m a student and I feel scrutinized about being behind from other. do you think that I can use your story for my project it’s a visual piece that talks of the affects neurological disorders have on people. Thank you MONEE BROADNAX
Well, yesterday I had "the talk: with my boss(es). I was truthful but didn't go into the possibility of what the future might be like, because who knows? Maybe my ataxia will progress so slowly they will never see a change. And I wanted to keep the conversation as light and positive as I could.
I've been working full time, with a 2 and a half hour round-trip commute. It's just too much. I arrive home too exhausted to cook or even to eat - I just want to go directly to sleep.
So I am now working 4 days a week with a 3-consecutive day off rest - by Dr's orders. I'll start that this week. And we will revisit this at my next neuro appointment,
I think I will feel better and more energized. I plan to have more time to exercise and even visit my kids.
I had 2 surprise outcomes. #1 All 3 bosses were extraordinarily supportive. They agreed to the shortened work schedule right away and promised to be actively looking for other ways to help. I didn't think that would happen!
and #2 - my top boss shared with me his family's history with MS. He said he was extremely sensitive to neurological issues and would be helping me throughout this journey.
And then I shared with my 2 co-workers because it's been very stressful "hiding" the truth for so long.
I also found out that people have been talking about me quite a bit and I didn't know that. I can't wait for Friday - I am sleeping in!
I’m afraid people are going to start saying stuff to me. I work in a grocery store as a cashier. Many times I “zone out” during the payment process. Sometimes I can “wake up” and remember what I’m doing, but today was horrible! I “zoned out” so bad that I forgot what I was doing and keyed in the person paid me the right amount. Luckily, I was confused and said something. My manager counted my drawer and I was $10.00 short. The customer had not left and paid me $10.00. One time a customer was paying with a check. And I had to pull a supervisor over to finish because I forgot what I was doing.
HI, When I was workin everybody knew I was getting slower and helped as much as they could.
After going to a neuromuscular specialist and my reg. doc got the results, She asked me to come in and see her. She immeddiatly put me 30 days off, Then I had a myclonus episode and spent the day in ER. The next day I went back to my doctor as this was something new. I was taken off of work, and started the disabillity paperwork, with my doctor's and my neurologists help I was put on permament disability.
I had several mri scans before i had to have a pacemaker put in, then follow up CT scans this last year. I had a bunch of blood tests and by the time I saw a 5th or 6th neurologist who specialises in this type of rare disease plus some helpful info from family I was diagnosted with SCA. What I'm concerned about is when it's this agressive it could turn into MSA, but he is confident after testing was done it is SCA 14.