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AVM Survivors Network

Advice or Guidance for cerebellum AVM

Hi, I’m three years on from my bleed within the cerebellum. I have wrote with concerns in my earlier days and have kept very positive with the situation which I am in. Don’t get me wrong it’s nothing but hard and everyday symptoms wise seems the same. Saying that if you look at recovery in month blocks, it’s then you witness the improvement. For me if I look at my recovery in blocks of six I see that I have improved. This is just how it seems to work for me someone else I’m sure is much different. Improvement maybe very minor for example it could be that the few steps you take from the kitchen to garden (if you have one) are much stronger, you can walk and now move eyes and head without having an unbalanced moment etc. Some individuals may read this and think what on Earth am I going on about. I have experienced many symptoms and some people cannot relate to them in any form. There just unique to me I guess and over time I have come to accept that there is very little guidance for myself as it really is just a waiting game. As long as I am acknowledging the improvement it keeps my spirit in play. I talk myself through improvements and tell myself how it has improved. If anything this experience has taught me the importance of patience. The reason for my post is if anyone has any suggestions on my recovery rehabilitation? I’m still not independent as I’m not walking independently as yet. Saying that though it is improving I’m just not there yet. I’m blessed to have amazing parents who have helped me throughout this situation of mine. I’m taken out and about and take on days how I would have before the bleed. It maybe a fault of mine to believe as strongly as I do for my independence, as that would then result in freedom and independent living. I can join the world again, I may even drive again…has anyone got any journeys which they can share which consist of the slow recovery with walking? Thank you for reading my post even if not able to help. Keep smiling, even on the rainy days. I know I do… We are all strong individuals, some of us may just struggle to see it. X

Jo,

Hi! It’s good to see you write and it sounds like you’re making good progress. It’s as slow as anything but, like you say, progress is a month-by-month thing, no quicker than that.

The main person who I think I remember fighting through life rather like you describe is @Teiry. I think you guys have got lots in common.

Teiry, would you mind sharing how you have got on with your recovery and rehab and how you are doing this year?

Very best wishes both,

Richard

Thank you for your response. It’s very hard finding anyone who has incurred anything similar to myself. I hope to hear from @Teiry may hold the medicine which I require.

Jo