My son is 23 and he has servear avm and is restricted to a wheel chair, it is so hard seeing my son this way , breaks my heart. His impulse thinking is damaged and he has no mobility in his hands.Wanted if anyone here has servearv ?avm
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Hi Beamer, The quick answer to you question is “Yes!” Tons of people here have had a similar journey.
It’s a severe trauma to both him and you. You’ll need unbelievable patience at the beginning.
The medical system/doctors is a quagmire. Remember that you have choices and they are your choices for the most part. I said “for the most part” because your son is 23 and everything is ultimately his decision unless he is incapable of making rational choices.
This forum is a good place to educate yourself, find out what to expect and get support. Best wishes in this tough time, Greg
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@Beamer351 Welcome to the group
Glad you found us for support.
I have been both the patient and the care giver ( for my younger sister, 2 years after my health issues she got the flesh eating virus , necrotizing fasciitis from a pool in Mexico- she almost died a handful of times and lost most of the tissue in her lower leg) and personally speaking I found it harder to be the care giver .
I had a stroke first then my AVM developed about six months later.
But like your son I didn’t have mobility in my hand or even just one side of my body. I was 43 and found it extremely frustrating. I was very athletic prior .
I also had brain damage and couldn’t talk or remember anything short term.
My husband, younger sister, and mom were all my advocates while I recovered. Once I could walk my husband gave me the task of getting the mail ( I was still pretty out of it) I knew what I wanted to say it just wasn’t coming out correctly and it was exhausting, if you have ever weight trained I found it to be like lifting your max weight all the time. Little by Little I did a bit more.
In the beginning I felt like burdened esp since my husband is 10 years older and I had no health issues anf he is the one with high blood pressure and high cholesterol. My stroke was from blood clots in my brain.
But as I got better I just kept doing my PT and my brain exercises daily. I said if I ever got my brain back I would give back in some way and help others. I am now on my county Aging Commission.
I still have pain daily but I know how lucky I am and each day is a blessing.
In the USA we have aging and adult services which also covers people with disabilities. There are usually services like in home services like cleaning and cooking meals, and driving to appointments.
There are also care giver support groups,
Caretaker fatigue is a real thing and it’s important to take breaks.
I am hopeful there is something similar in Canada.
We are here for both of you.
Hugs
Angela
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@Beamer351 Welcome to the family and I am sure there are many members here who can relate to what you are going through with your son, either from first hand experience with such an AVM or caring for someone with something similar… please rest knowing you are not alone and no matter how hard it gets you need to be strong and push until you overcome this mountain… God bless!
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