I am working part-time at a grocery store. It is not good for me to work in a grocery store as it is very hard to maintain my balance as I carry groceries out to the car, or even just walking in the building. My mother wants me to leave the store for full-time job in the field that I have a degree in.
I want to leave the store! I am not really sure what I want to do other than that. I been thinking of getting a part-time job or two part-time jobs even. One would be work at home the other would be out in public. And I would like to have a lot of free time to exercise and keep my muscles in shape.
I was diagnosed with SCA2 September 1, 2012. My mom always tells me I don’t look that bad, however I feel like I am off-balance quite a bit. I also feel like I cannot focus on things visually. My dad had this, and she said that her idea of me getting a full-time job was what she thought best based on my dad’s experience of the illness, to get Social Security benefits.
I don’t know what to do because I don’t feel like leaving the house all the time with a full-time job, however I do want to get SSecurity. Is there any advice anyone has?
Sounds like you need to make some decisions based on what you feel is best regardless of your mother's best intentions. You've mentioned a few things, like working from home, to getting a job in the degree you hold. Are these ideas or actual options that are available? Why does getting a job in the field you have your degree have to be full-time and not part time? I live in Australia and we have specific job centres for people with disabilities/health condition, is this type of service available to you? Can you only get social security once you have had a full time job? I don't know, I think it's worthwhile checking, maybe the 'rules' have changed. In addition, it sounds like you could do with some local advice and support to help you make decisions.
I don't want to come across as dictatorial or trying to tell you what to do because obviously you know more about how things work there than I do, but I think that although it would be nice to have a lot of free time to keep your muscles in shape, it is good that you have a degree and are capable of working in that field.
Personally, I'd go for a full time job in the field that you are qualified in. It sound like you are very young at the moment so you might have a long time to go through this and the disease may progress quickly or it could take a long time for you to become more and more disabled. There might be plenty of time before you have to concentrate most of your time on keeping in shape, and eventually you may possibly have no choice, and of course you will get the social security benefits (I gather that is the way it works in America?)
Take things "one day at a time" right now. I know that that sounds like a cliché, but that is probably the best way to handle this. I am assuming that a full time job in your field would be a sedentary job????? Well that makes all the difference because obviously working in a grocery store is probably too physically taxing. One of the worst things that can happen to people like us is to become too "hermity" or housebound.
There r people that get SS and have never worked. SS seems to be a complicated issue here in the US.
Do you have an opportunity to work in your degree field? Sometimes it helps to help others n takes the mind off our problems for a bit and we can get a clearer picture then of what we need to do. I am still trying to figure it out myself. Maybe others can give u some ideas.
I also have sca2 and worked full-time in my field for about 6 years. Then I worked part time for about 6 more years. I would try to get a full-time job in your field and work as long as possible. I was then able to get social security with no problem.
i don't know what i'd do without SS benefits. i was diagnosed with SCA2 inn 2000. it took me 7 years before i cpouldn't walk. i know we're all different. good luck
Dear friend. …its a real pleasure to talk to you and learn about your experience.Im a mmother of four girls. My third who will be 23 next Tuesday has ataxia. She is a preschool certified teacher and has a part time job
she exercisesin the afternoon. Her balance is not good either. Also she has a hard time swallowing sn chokes a lot. It is very important to gave a good joband of course your SS for your future. Maybe get the full time and exercise late afternoon. I imagine you are a young man! Never loose hope. Keep on trying. …I have a feeling that they will come up with something new for all of you. By the way. .where are you from and how old? Take care and keep in touch! God bless you! Ms . Maggie
I have a degree in Counselling too! Certainly sounds like you could get some part time or full time work in that area. I'm wondering what made you decide to work in retail instead of going into your field of study? Anyway that's not something you have explain, but self reflection on this point might assist you in making your future move.
Social Security (SS) and Social Security Disability Insurance (SSDI) are two different things. You could get SSDI fairly easily depending on how severe you ataxia is. Social Security starts when you are "of age" which can be as early as 62 or if you choose 70. SS is based on a forumla which takes your best 5 years of earnings and figures out how much you get. SSDI does the same thing but there is a minimum which you would get in order to live. The best advise anyone could give you is to go to a social security office and talk to one of the agents there. The agents have heard everything from people wanting SSDI for a hangnail to someone 97 not wanting to take their SS benefits. They could give you an idea of how much you would make at this time. A masters degree in counseling would be fairly easy to get a job which you would be able to sit. Going from no job to a full-time job may be such a shock to your system that you may want to start out part-time and work into a full-time. Keep in mind even if you do decide to go on SSDI you would also qualify for other programs, as long as you were living on your own, which could assist in food, housing and maybe retraining for something you feel you could do. Not easy to make decisions with your Mom telling you would you should do.
Thanks for all the advice. I am a 30 year old female who has a maters in counseling. I live in Nashville TN. Right now I haven’t found a job in that field. Hence, why I’m working in a grocery store. I guess it’s just I feel rough at times and want work at home because I feel “safer” doing it. Maybe I should bite the bullet and work full time while I can.
Hi, I am a certified ESL teacher and work with elementary school students. I was diagnosed in 2010 but still have been working full time. Ive been getting more exhausted and tired quicker and longer and was contemplating the same thing. I dont want to ever have an episode during work where i suddenly cant walk anymore. Im 32 now and im doing okay. I can get around without a walker. People seem to understand what im saying. my handwriting is horrible but I feel like i can still do this so i plan to do this for as long as i can with daily healthy diet and exercise. I believe sitting and resting for long periods of time robs us of our movement. So I try to stay on my feet for as long as i can and when i need to rest, i'll sit but for only a certain amount of time.
Maggie said:
Dear friend. ..its a real pleasure to talk to you and learn about your experience.Im a mmother of four girls. My third who will be 23 next Tuesday has ataxia. She is a preschool certified teacher and has a part time job she exercisesin the afternoon. Her balance is not good either. Also she has a hard time swallowing sn chokes a lot. It is very important to gave a good joband of course your SS for your future. Maybe get the full time and exercise late afternoon. I imagine you are a young man! Never loose hope. Keep on trying. ..I have a feeling that they will come up with something new for all of you. By the way. .where are you from and how old? Take care and keep in touch! God bless you! Ms . Maggie
How old are you? I would recommend you apply on line and have all your doctors papers, notes ready for those questions. Have all your general doctors notes, your therapist notes and and doctors you have seen in the paste three years.
I believe keeping your present job may help you in the long run as it will force you to keep pushing yourself and keep you agile I think you will know when you have to quit your job. Working at home is not a good idea in my mind because being ill may put you in a vulnerable position with a fast talker.
When I was first diagnosed my friends didn’t think I was very bad either but they have no idea what it’s like to live with Ataxia. I also worked at least 7 years after diagnosis just because I had to – had no way to live otherwise. I now have Social Security Disability. You can apply for this and get it easily with an SCA2 diagnosis. It’s on a special list and they grant it almost automatically. You have to tell them why working FULL TIME isn’t possible even if you haven’t worked before much. Stress was my main complaint as it brought on all the other symptoms and working full time was too stressful. If you choose to work full time or even part time for many years and put off social security you could end up receiving a lot more money each month when you do finally apply for disability depending on how much you pay into social security over the years. I also believe that working at a sitting job does rob us of our mobility. Continuing to exercise and move is very very important. If you collect social security disability you are still allowed to work part time later on (after being awarded). To be awarded you have to be NOT working. If later on you do counseling at home part time you can earn up to $10,000 a year plus business expenses needed to have your own counseling business (phone, office, computer, etc). Good luck!
Do what you can do, now, but definitely apply! It took me 18 months to get it, although, it was before the Ataxia set in, in 2007. I have worked at my job for 27 years, now, and the company still allows me to work, when I am able. I was a waitress, and had to have 2 shoulder surgeries, and now I need a replacement, and again, I found out I had Ataxia..Disablity SSDI will give you about 1020.00 a month, very cheap health care, and you are allowed to make up to $1000.00 a month working without effecting it, so I would suggest you do it.
First, if you want SS benefits, you can apply but you CAN'T work from the time you file until you're approved. After they approve your benefits you can work up to certain dollar amount every month. (Watch the months that have 3 paychecks) (Government goes by the dollar amount each month and if you go over they will take away your benefits).
As for working at all I say work until you can't anymore but do something you can do. It doesn't sound like working at the grocery store doesn't work for you. A temp agency might help until you find what you like.