I was initially diagnosed with CBD in June 2017. Having done several research projects at Cambridge it now transpires that it’s more likely to be Multiple System Atrophy (MSA)same outcome and no treatment or cure. Has anyone been diagnosed with same? How are you coping cause I’m not? Having counselling,was on antidepressants but can’t get past ‘poor me’ as shaking all the time so can’t do much physically. Lots of problems with bowels and waterworks. Husband still working at moment,though limited. On my own far too much.Help!Jayne
Msa: I was initially diagnosed with CBD... - Positive Wellbein...
Positive Wellbeing During Self-Isolation
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Aprilfool20
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I am sorry to hear of your diagnosis Jayne. It is a shock when there are no treatments or cures for certain conditions only ways of managing them. Have you been assessed by OT and Physio to make sure all your needs are being met. Social service referrals can be made to help with any adaptations you may need around the house. You may already have this site for support but I’ll put it anyway. msatrust.org.uk/ 🌷🌸
Thank you for this. I had all the necessary help when diagnosed with cbd.can ‘t help wallowing though! Lost my life,still trying to find a new one not easy after 62/3 years!Jayne
Yes, some conditions are life changing and turn your world upside down. You have to learn to live again in a different way. Acceptance is very difficult when everything has to change. You have lost the live you once had and now have to begin a new one. It’s devastating but hopefully you will claw some back and find a medium where you have found part of yourself again. 🌸🌷
That's challenging Aprilfool20. It can be depressing to find you have a condition that can only be managed and not cured. I think the best thing might be to only allow yourself to think in very small portions of time. It makes things much worse to dwell on what might be coming tomorrow, next week, next month and next year. Equally it might not happen, so I'd say just deal with each day as it comes and get on with each one as stoically as you can. Doesn't mean you have to try to be cheerful about life all of the time. You are entitled to a good wallow if that's what you need, but maybe try not to make it your habit. If you give in to that all of the time, it can eventually make you into a very different person to the one you were before diagnosis and can change your relationships with other people.
You'll probably have bad days and slightly less bad days in terms of your feelings. So try to capitalise and build on the days when you seem to get through better.
Wishing you all the best and please lean on us all here in the PWB community whenever you need to. We want to help! 🙏
Aprilfool20 in reply to
I have lived with this hanging over me for three and half years.taking each day has become the norm!just having particularly bad day after change in diagnosis (for the worst)and the shakes are bad so can do nothing except sit around and wait for it to subside.
Hi this doesn't sound good and I'm sorry. Just checked and there is a community on here but it doesn't look very well used. It might be worth a look though.
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