Hello. I’m just wondering, does anybody feel like they need extra help due to their Avm? I mean help with clothes and hair, laundry, cleaning, driving, and the like?
Hey Alison,
I’m Merl from the Modsupport Team. I don’t have an AVM but a differing little nasty growing in my head. I think the problem with anything ‘neuro’, how it affects one individual to another can be poles apart. For some it can be minimal, for others it can be life changing. There is no exact impact that affects everybody in the same way. Some medicos like to have us fit in a certain shaped box, anything outside of that box is often deemed as ‘not related’, but I wasn’t in this position prior to my last surgeries, so, for me, yea, it MUST be related. Many of us have lingering effects with brain issues.
For many years prior to my last surgeries I was a teacher, working with people with disabilities, teaching them independent living skills. In really basic terms, teaching them the skills most people take for granted. A big part of my role was support. For example, teaching people how to shop is a good skill, but only if they have the ability to shop. Some of my clients did not have the ability and never will be able to shop independently, be that due to physical limitations or cognitive limitations. This was where my role had to be flexible to meet that particular client’s particular needs.
There are services available to meet ‘most’ people’s needs, but some service providers have set criteria that clients need to meet to receive the service and the support agencies can be fairly strict in those criteria. Rather than requiring the client to tick a particular box to receive the service, what I would ‘try’ to do was manipulate the criteria to meet the clients needs.
Now, I’m in Australia and I have a good knowledge of what services are available and how to access them here. How this all works in other countries can be VERY individual, but many hospitals have a social work departments and they would probably be the best agency to make contact with such services. Most community service providers have a network of services that they have a relationship with, so although the social work department won’t have their own support service, they’d know who to contact and the steps required to access them. Accessing services via a local social worker can also save you from having to hunt for help.
I do know that in the U.S. there is also the Brain Injury Association. They maybe able to direct you to specific services within your location. Here’s a link:
Brain Injury - Brain Injury Association of America
As I say, I’m not familiar with the U.S systems (nor how they work) but at the very least, they should be able to direct you to a service that meets your needs. I would suggest that you make yourself a list of what you believe you may need and what you feel is of priority for you. I say this as often services can come along and say, for example, “We will help with the cooking…” but if you can already cook, offering cooking assistance maybe of little help, and remember this is about YOU and if the service doesn’t meet YOUR needs, it can often be more of a hinderance than a help. Having a list can often help identify YOUR specific needs and priorities.
There are services out there to help. Use them to your advantage and please do let us know how it all goes. I can’t say I can help from Australia, but I may be able to give you some more direction in how to access appropriate services.
Hope it helps
Merl from the Modsupport Team
Yes. My avm ruptured and at this time they cannot do surgery. My hands have limited function. Im able to do some things, but it is harder, takes longer and is not done as well. I also have fatigue so have to balance daily tasks with rest.
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Hello Alison!
My AVM hasn’t ruptured and I’ve had proton radiation around 7 years ago.
With that said, I’m very lucky.
I don’t feel like I need any extra help. I’m just very messy with keeping time and my memory isn’t the best. Good thing I’m self-employed 