In Limbo

Hello all and wishing you a very happy new year, well we have to stay positive!!

I live in the south east of england in a pretty rural location. I bought the house in 2006 after my divorce which came about because of the early days before diagnoses of SCA. The house was in an ideal location back then as I was into mountain biking and running, as well as swimming at my local pool.

The problem I have is I have been at my job for 26 years now and am not greatly happy there, probably would have moved on 10 years ago if circumstances had been different. But now feel it is definetley too late to go through interviewing and stuff as you all know nervousness only exascerbates symptoms.

Anyhow apart from this I do live alone and socialising is very awkward or impossible especially on your own. Also as I can't do any of the activites I used to enjoy regularly, I do find myself being at home alot. This is getting me down especially in the dark winter days. I've realised also some of the decor is in serious need of updating but can't face the thought of upheavel as well as financial costs. This is also getting me down, obviously This would have been a simple task years back but very daunting now.

Sorry to ramble on but yes I do feel as if I am stuck in limbo, a job that is becoming harder to do because of the SCA also not that enjoyable, isolation and not much of a support network in terms of family or freinds. I do rather feel as if I'm at a crossroads in life and don't know which direction to go in.

I guess the other feeling is a usual one but slight envy of other people getting on with their lives, where I'm stuck mentally in the period in life pre diagnosess. Does sound selfish but is hard to explain properly, sorry.

I have recently started on a course of Citalopram for depression which has helped but now reality seems to be bitting.

BTW I'm 45...

Hi, is there a ataxia group meeting or some kind of meeting with other people or even a exercise program class or something that would get you to make yourself get out and have to socialize at least once a month or weekly?

I found myself starting to isolate too much and purposely spent money I didn't have on a Yoga class just to make myself get out and socialize and re focus.

It helped me allot! Maybe there is a group close or even far that you could enjoy? Just a thought because I totally understand how it's way to easy to stay inside. I think as humans we are built to need to change our environment a little at times.

Can totally relate to your sense of isolation despite the fact that I am retired and have a caring husband. We all need to feel responsible to ourselves for our own self worth and happiness but anxiety is difficult to overcome.

Going to classes sounds great advice but not always an option.. especially if you live in a remote place. I had my car converted to hand controls so that I could continue driving but I dont feel competent driving at night. Although we live in a retirement apartment, it is not on a bus route .. in fact it is on a narrow country lane with passing points. There are no pavements either.

I rely on FB and here to keep me sane.

I do find that since I bought a rollator [on ebay] it is easier to get myself out for a walk around the grounds here. Makes a big difference when you accept mobility aids.

Hi Martin. Where in South East are you? I live in Gravesend Kent and I know that there is a support group in Rochester on Wednesdays if you are able to get there. I he vent been yet so can’t comment… I too have SCA type 6 recently diagnosed. Battling depression etc. you are not alone we are here to help and support. Bens friends are great. Take care xxx



Beverley said:

Hi Martin. Where in South East are you? I live in Gravesend Kent and I know that there is a support group in Rochester on Wednesdays if you are able to get there. I he vent been yet so can't comment.. I too have SCA type 6 recently diagnosed. Battling depression etc. you are not alone we are here to help and support. Bens friends are great. Take care xxx

Hi, I have ataxia and I sure can relate to everything you are saying. I agree that a class or club just to be social is a fantastic way get help ourself out of depression but its not always easy. The snow here (in the USA) makes it hard for me to get out even with a walker/rolater)

If you don't have money for a large renovation (like me) how about changing the little things that don't cost much? One can of paint can really cheer things up. (I have to pay someone to paint for me but oh well!)

Stay connected as well. Facebook and here is a great place to find supporters. Visit here often. You'll always find people and kind words to lift your spirits.

Wishing you all the best!



Beverley said:

Hi Martin. Where in South East are you? I live in Gravesend Kent and I know that there is a support group in Rochester on Wednesdays if you are able to get there. I he vent been yet so can't comment.. I too have SCA type 6 recently diagnosed. Battling depression etc. you are not alone we are here to help and support. Bens friends are great. Take care xxx
Hi Bev Thanks for your reply. I'm just outside Maidstone, it's funny you mentioned about the Rochester support group as I've only just emailed them today and am hoping to go soon.

Hi Martin,
Snoozy is right. Sometimes, a can of paint will do wonder for a house.
Years ago, a friend of mine who is single and does not have much money to spend on redecorating, invited all her friends to a " painting party". She provides all the necessary paint, brushes, rollers etc… And lunch and we spent the whole day painting all the rooms in the house. We did as much laughing as we did painting and by the end of the afternoon, it was all done and we all had a fabulous time. You could also, with help of friends, rearrange the furniture and if you have pictures on the walls, put them in a different place. This will give the rooms a completely different look at no cost. May be your fiormer swimming/ hiking/ cycling friends or others could help you with all this? Or sometimes good neighbors are ready to give a hand if asked…

As for your job, 26 years in a company is a long time to give up now. If you can stand it, stay a few more years until you can financially afford to retire. If not start looking… But I know jobs are scarce nowadays…

Good luck to you and best wishes!

That’s great, it’s a start. I am unable to drive at the mo, my choice as I have lost my confidence so I have to rely on my hubbie. I’m in limbo wether to give up work. It’s not an easy decision to make as I have kids two of which have Autism and I am the bread winner. If you go can you let me know what it’s like ? I’m not too far away so if you need any help or just some one to talk to please let me know. We have to stick together. Have you claimed DLA ? I did and i get over £500 a month. It’s not means tested so doesn’t include any wages etc… Loads you can claim you just need to know where to look. Take care and keep your chin up. Bev xx.



Martin Oxley said:



Beverley said:

Hi Martin. Where in South East are you? I live in Gravesend Kent and I know that there is a support group in Rochester on Wednesdays if you are able to get there. I he vent been yet so can’t comment… I too have SCA type 6 recently diagnosed. Battling depression etc. you are not alone we are here to help and support. Bens friends are great. Take care xxx
Hi Bev Thanks for your reply. I'm just outside Maidstone, it's funny you mentioned about the Rochester support group as I've only just emailed them today and am hoping to go soon.

Hi Bev, yes I will certainly let you know how it is. I do claim DLA, higher mobility and lower care rate, it about £305 a month, does help.

Beverley said:

That's great, it's a start. I am unable to drive at the mo, my choice as I have lost my confidence so I have to rely on my hubbie. I'm in limbo wether to give up work. It's not an easy decision to make as I have kids two of which have Autism and I am the bread winner. If you go can you let me know what it's like ? I'm not too far away so if you need any help or just some one to talk to please let me know. We have to stick together. Have you claimed DLA ? I did and i get over £500 a month. It's not means tested so doesn't include any wages etc.. Loads you can claim you just need to know where to look. Take care and keep your chin up. Bev xx.

Martin Oxley said:



Beverley said:

Hi Martin. Where in South East are you? I live in Gravesend Kent and I know that there is a support group in Rochester on Wednesdays if you are able to get there. I he vent been yet so can't comment.. I too have SCA type 6 recently diagnosed. Battling depression etc. you are not alone we are here to help and support. Bens friends are great. Take care xxx
Hi Bev Thanks for your reply. I'm just outside Maidstone, it's funny you mentioned about the Rochester support group as I've only just emailed them today and am hoping to go soon.

I can totally understand where you're coming from. I'm retired (7 years) due to my ataxia. I left a job that gave me a real purpose in my life (28 years), and still miss it! Even though you don't love your job, do it for as long as you can, as the isolation can be daunting when you are no longer working (just my opinion). In terms of socializing, other's suggestions of joining an ataxia group (if possible) are good. I would do that if there was one close enough to me (I live in the States). Ataxia can be frustrating and challenging! Take it one day at a time and try to be as positive as possible. Also, if you don't think you're antidepressant is working anymore, talk with your doctor, as you may need to try something else (just my opinion). Also, as I'm certain you know, this site is wonderful for support and understanding! You are not alone in your journey! ;o)

Martin I completely understand how you feel. Been there done that. Your story is similar to mine. I am in the US in Texas so seems like we Ataxians go through a lot of the similar things no matter where we live. I talked to Social Security here in the states and I can't get any help until I turn 62. Very frustrating since I don't have a job. Oh well have to keep going.