I have SCA2, diagnosed in 1993. I am 61 years young, still walking with a rollator, still driving as long as it is a close distance, and not complaining. I don't understand why I don't want to go anywhere. I get up and dress and think "I am going to Walmart" but then when it comes to actually leaving, I start making excuses why I don't need to go. It's like that with everything and everywhere, Church, out to dinner everywhere. I may leave the house 1 time a week. I live alone, and would like to meet some new people to "hang out" with, not sure how when I never leave the house. This is not living, it is existing. Does anyone else have this problem? I have been told that I feel safe at home, so I don't want to leave.
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Could it be self-consciousness causing your home-bound-ness? Not trying to minimize things, but if it is, try not to concern yourself with what others think - those who are your friends won't care - or will care enough to help when needed but not look down on you - and those who do think less of you for some reason just aren't worth having as friends. That's my biggest struggle - I'm not using a walker or cane yet, but it's only a matter of time for me.
If that's not it, not sure what it could be.
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For me it’s am issue of comfort , although my family and kids do get me out!
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I have sca6 and am 68 years young. You sound just like me, except my husband has me get out a few times a week. It just seems like a hassle…and I am more secure at home. I use to love to “gad around”… Now I prefer to be a “homebody”! Oh well!
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I find this happens to me, I need to just water my plants out side which is easy for me to do but I just let them go too long and then I feel bad. Inside the house I do a lot but I don't let things go like I do outside.
I was the same a while ago (I'm 67, living on my own, can just walk with crutches and can hardly talk) however, once I made the effort to talk to people (if they don't want to listen to me, I don't want to listen to them!) and stopped making excuses to myself, I just go for it.
GO FOR IT! Be confident! People will soon see the real you.
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Hello, my name is Morlando Ross. I was diagnose with having SCA2 ever since I was 37. I understand what you are going through and I find myself feeling safe inside my apartment. I make excuses up not to go some where that gets me out the house. I plan to go and drive or out the house by placing it on the calendar. If it's on the calendar then I have to do it. You know the memory is bad any ways so I forget why I have to go to where I go so I just go.
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Dear Joan, I'm 60 years young, and was diagnosed with ataxia eleven years ago. I started using a cane about four years ago after a bad fall in which I hurt my back. I'm able to walk in my home without it, as I just bounce off wall and furniture...,ha! My ataxia has progressed (walking is slowly becoming more of a problem, even with my cane) and it takes me so much effort to get ready to go out, I end up not going. I feel "safe" in my home. I don't like crowds of people, as I feel they might knock me over (it's difficult to negotiate in small spaces). I use to be very social and go here and there, not so much anymore. My speech is slurred, so I've become a very good listener...,ha! Sometimes I feel very sad about all this, but it's my new "normal". If you ever want to correspond, let me know please! ;o)
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If you like dogs, think about getting a service dog. It was the best thing my husband did. The dog not only helps him with daily tasks, but his confidence is better with the dog. I t may be because all eyes travel to the dog, past the wheelchair or walker and it gives him a chance to start conversations with people. If he goes to the bank or the store, people look for him and the dog (mainly the dog).
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I also have SCA2 and we're the same age. I do have this problem. It helps to have a support group with others that have some sort of ataxia. My ataxia support group has picnics, holiday parties, fundraisers for NAF, as well as the regular meetings. Besides, if I isolate too much I get depressed. My suggestion is find a support group.
I MAKE myself go out on my tryke to do the grocery shopping for my 85 year old mother, and tend to her home bound needs, and mine, along with 3 cats. I am with ya.. most days I don't feel like going anywhere, but I tell myself "This is NOT going to kick my a$$"... Just do it, and you will feel much better. I also have a small container pot vegetable garden that has been a world of help in getting outside, and, just sitting on the lawn with my cats, and just contemplating life, and, it seriously makes me meditate. (Even if I don't mean to)! There is nothing like being in your home, but, making yourself go outside, on a daily basis is so worth it. Spiritually, and for your mental piece of mind. Stay well, my friend!
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Hi Joan, I am alone too, as my husband died 10 years ago. I am 58. We used to cruise 2x yearly and travelled Europe extensively . I have suffered with this for about 15 years. I make every excuse in the book when friends ask me to go somewhere. This new me is not the real me, walking with a cane and slurring during conversation. When did this happen? I look back and remember a great life. I am slowly losing friends I think they must be sick of hearing excuses. I understand…
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I lost all of my friends, wife (by divorce), and my family barely speaks to me. I am a young 40 year old male who lives alone and is happy that solitude is not a crime and it makes you feel safe. You don't make excuses for your disability because you can't control it it controls you and then death.
Check and see is you have a senior citizens center where u live. The day I turned 60 I started going a couple of days a week and there are others there with rollators. I’m the youngest one there but I don’t care. they usually have buses n might could pick u up. You might make some friends there. I make myself go and do things. Maybe get a calendar write an activity on it and start 1 day a week n go somewhere. Then 2 days a week etc. establish some type of weekly routine and that will help keep you on track. Do you have family r friends you could text r talk to? At McDonalds you can get a sausage biscuit n coffee for 1.62. I go and eat breakfast there once a week n then go to senior center twice a week. The library is free n you can check out movies and books and use computers etc. I Do not have many friends either.
You might also check with your doctor. The more you stay inside n don’t get sunshine your Vitamin D decreases and you can get depressed. If you r feeling like this in the summer then it might get worse when winter comes n daylight is even less. Talk with dr and don’t suffer. Don’t give up n keep pushing yourself to go. Good luck.
I am 43 years old with sca2 and trying to come to terms with being alone, I do have a family but few close friends. My friends slowly ended our friendship I guess because they felt awkward around me. I find that I do like to stay home but sometimes would like some friends to hang out with.
Hi,
I have C.A. Since last September I am unable to move out. Getting in and out of the car causes immense stress and anxiety. I love staying home now than taking the risk of going out. Right now my husband helps me a lot with my daily activities as I am unable to be on my own. He suffers from Parkinson’s but mobile at the moment with his share of problems. We remain happy and cheerful as long as we can. The rare neurological disorders only control us forcing a helpless situation and we have excuses to our credit. So do not blame yourself. Do stay strong. My best wishes.
I’ve been dealing with my sca6 for a little over 2 years now. I’m 60 and I have always been very active. It’s been a real adjustment for me to not do the things I used to. I still do a lot - but I can see the change and it is hard for me to see all the things around me that I used to do and now I’m just letting them go. I think I will be able to make this transition, but it’s hard. I try to keep active, go to the gym and stay positive. What else can you do?
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Hi, I know this might be streching things but we can talk over the internet. Would you like my friendship?
I have the same problem especially in winter. For me it’s fear of the unexpected and it feels safe and easy at home in front of the TV or whatever. Early on my son agreed to take me with him on a trip to Thailand – something I had wanted to do for a long time but thought I could never again travel because of my fear. I was really motivated and knew I be OK with my son looking out for me. It changed everything. I had so much confidence afterward and now travel alone regularly. I go to Hawaii in winter as it’s too cold and dreary in Oregon to go out. What I’m learning is that getting out is something that is necessary to stay mobile and for good mental health. I make myself get past the fear by finding things I’m really looking forward to doing. Also am committed to helping with my grandkids. This is work but keeps me moving and has great rewards. It’s not easy but force yourself to get out and have fun while doing it! Think Big. Bigger than going to Wallmart. Every obstacle likely has a solution. Good luck.
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I feel that I am also in this group. It has gotten worse, but there doesn't seem to be any reason. I can get around fairly well, and use a cane for security. I have a group of auto-affectionados who are very caring. I have family and friends, but it seems that I only want to read and think about things with myself. I still run on designated days (I stay in the back). I am 80, so it's not going to get better. I am on an antidepressant (effexor xr 150) I say that I want to go, but when I get up I just make excuses to pass time. Going back and thinking about this, I believe another writer had a good idea: make a calandar note to go somewhere at a specific time. I seem to keep them and I can also keep an appointment to help someone.. so I am goiong to try that. Light the fuse!