Hi everyone . Just need to sound off. Have just moved,the flat is nice but I have no particular view. Didn’t think it would matter as I only sit around all day. Initially diagnosed with CBD,then Parkinsons. Now it appears that it is MSA. No cure and no medication. Aren’t I lucky? How do I cope when each day it gets harder to get around on my rollator. And I have to rely on my husband to take me out and push me around in a wheelchair, speech is also on its way out
I try to do exercises but my muscles are virtually non existent. Told doctor pregalbin was not suiting me in fact made things worse ,treating for depression. Then along came COVID, no I haven’t /had it. But it has made life much harder. Any one got any tips on how to cope? J
Written by
Aprilfool20
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
Hi Aprilfool, I'm so sorry to hear you aren't in a great place right now. Covid is definitely making everything harder and on top of a recent diagnosis, I'm sure things feel incredibly difficult.
I'm glad you've come here to find support! It's incredibly lonely the way Covid has isolated us, even when we live with our husbands or partners. It sounds great that your husband is able to talk you out when you can and I hope you get to explore your new area a bit if the weather is nice.
I have found I like watching my favourite films and tv shows when I feel really down.. are they any particular ones that are your favourite? Sometimes I just like to come on here and talk about my day as well and see what other people are up to, that helps me feel more connected to the outside world.
Also, HealthUnlocked has a community for MSA as well if you are interested in a place to talk about your diagnosis healthunlocked.com/msa-trust
I do hope you feel better soon and we are always here to talk!
We are all here to support each other. It’s good that you like the new flat - it is a shame that you don’t have a view. I’m sorry to hear about your ill health and your speech worsening. I hope your doctor can find an alternative as opposed to the pregabalin.
My condition means that I’m in bed most of the day and night (I feel extremely faint and get tremors, if I’m sat up or upright for more than 20 or so minutes). I’ve got lots of lovely pictures on my wardrobe to look at - things that make me smile. My favourite flowers, animals and scenery. There’s lovely people on here to laugh, share and encourage us. Plus, I just take each day as it comes. That’s not to say that I don’t have times when I am a bit miserable but that’s just healthy emotions. X
Thanks for your reply,Narwha10. You sound in a worse state than me! Do you have support at alI.I find the tremors worst. All day every day so much that they make me feel I’m always going to falll. Do you have a wheelchair.Jx
Of course Aprilfool20. It's fine to have a rant (within community guidelines), and sometimes just doing it can make you feel so much better.
I think we're all frustrated to some extent with the restrictions caused by covid19 and then when you have other life restrictions too, it can build up into tsunami inside you.
But you're smart! You've seen yourself what the problem is. It's just that you can't find your way out of it.
But it is to somehow find those things which can bring you a little peace of mind given the restrictions in health and the pandemic which have to be endured.
It's difficult for me to suggest what might do it for you, as we are all so diverse in what makes us happy, but see if you can make a mental list of those things which make you feel better (even if you can't do them right now), and then pick out something which you can do now.
It's a chain reaction too. If you can find one thing to make you even a tiny bit happier, that may give you the strength to go on and find others which make life less of a burden.
One of the hardest things to do in life is to adapt to change and when those changes have been thrust on us and there's no alternative, it's especially hard. But well worth working towards small goals as the alternative is to constantly be very unhappy.
I hope you can find your way out of this, and do have some conversations with your husband as to how you can work together to make your life more bearable. Wishing you well! 🙏
Unfortunately, you said your illness was progressive and there’s no cure or medication 😞.
I am hopeful that I will get better. I live on my own but without my best friend at my beck and call, I would not be able to manage. Yes, I do have a wheelchair but it’s a daily challenge trying to wash and dress to be able to get out into the big wide world. But when I do - it’s so worth it. 😊😘
Yes, Covid is an addition we don't want, hence most of us being in the same boat as regards getting out.
I moved house a month before lockdown, to Wales, best part of 300 miles, and within the month, the first lockdown. Getting down the hill to Tesco on my rollator, easy! Getting back up is a different matter! I get most of my food via delivery, so its only the papers and salady things I need to go out for.
Yet I have found that shielding is stealing my fitness, and the rollator is making me hunch, making my breathing worse than ever.
I get out into the garden, (slabs, gravel and tarmac!) to tend my pots, but I have been unable to get a greenhouse or a shed, because I don't drive and everywhere seems to be sold out. I do have plans for the garden, hopefully next year now.
I'm an obstinate old bat, and no longer give in easily, yet it is difficult.
One of the reasons we moved to a flat was because I can no longer get out to do the garden or pots. My husband is not interested. I can’t go out on my rollator on my own as my legs are too weak. I’m hoping to get a second hand mobility scooter as hubby is finding it hard to push the wheelchair. I have home delivery shop but would prefer to do it myself,just for company.
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Routines. What should that consist of?
Today’s Fire Preparation