AVM Survivors Network

The "New You" - appt. with primary doc


I think this could fall under either emotional support or general avm discussions - so moderators - feel free to move it if you want.

I went and saw my primary care doc this morning - annual physical schedule from August of last year. He sat down and said, “Well, you’ve certainly had a year…” (I nominate him for understatement of the year)

We then got to talking about what’s going on and what’s happening and how I’m feeling and how I’m feeling emotionally about all of it and how the pain levels are and so forth. I got him to laugh when I told him that my left ear sounds like Alvin and the Chipmunks when I block off hearing to my right ear.

But then he had some really important things to say, which is why I share them with you - because you all matter to me. He said that yesterday he had a patient in who he had to tell him he had Parkinsons. That patient had a choice. He could wake up today and think, I have Parkinsons, my life will never be the same. And it won’t. I have Parkinsons and I can’t… and on and on and he can let Parkinsons control him.

Or he can say, “Yes, I have Parkinsons, but I can still _______ and I can do ________ and I can ________ and establish a new purpose to life.” Yes, his life will never be the same, but he can still find meaning and worth and challenge in what he can do and what he wants to do in his new life.

We also talked about the fact that I should lose weight and that exercising is hard with the headaches and the balance issues. He recommended that I consider walking laps at the grocery store (it’s a big store) with a grocery cart - until I’m confident enough - though I might be confident enough to go out now - if I don’t go too fast.

He said to me, “Tom, you know what I think you need to do? You need to find a type of food or a type of cooking that is healthy that you like to do and take over cooking at home a couple of nights a week. You’ll have the time and it will give you a positive direction you can do that won’t feel like you are just treading water thinking about how much your head hurts or how many times you’ve almost fallen today. And then you can see, you can write, you can read, you can type- get something going that you can do with those that you feel passionate about. Don’t wait for Social Security, because they will take their time whether you are waiting or whether you are busy. Get busy doing something and you’ll feel better just because you won’t be thinking about it as much. Yeah, you still will - there will be days where taking out the trash and making breakfast is a good day, but there will be more days where it’s a medium to a good day because you were you.”

Now that’s obviously not a direct quote, but it did make me realize that in many ways I have been waiting - waiting for healing that probably won’t come, waiting for Social Security that is taking a long time - and I need to stop waiting for those and start getting busy with the new me.

So, questions for you:
I would love to find an online cook book/app where I could give each member of the family the chance to pick one dinner a month - assuming I’d do 2 a week - and then I’d have them to be abloe to prepare and shop in advance. Is there something like that out there? I’m a pretty decent cook when a recipe is set in front of me - but I know nothing about that part of it.

If someone (me) with a passion for social justice, for under privileged children, for reforming government, about technology and Christianity who loves to write asked you for ideas on where I should channel that - what would you say? And feel free to message me directly if you don’t want to “outloud” on here.

Thanks to all of you,


P.S. My computer crashed 1/2 way through this post - whoever enabled the auto save on draft feature - thank you!


Cooking light magazine has great recipes that are healthy and delicious


“…If someone (me) with a passion for social justice, for under privileged children, for reforming government, about technology and Christianity who loves to write asked you for ideas on where I should channel that - what would you say?..”

I’d say “Volunteering”. Get involved. Well, that’s what I did and it was the most rewarding thing I’ve ever done. It opened so many doors for me and gave me some sort of direction. My younger years were not easy, in fact, the way I explain it is “…if there was a right way and a wrong way to do things, I seemed to always choose the wrong way…” and I learnt the hard way about those choices. For a long time I used those experiences as a ‘poor me’ scenario (despite the fact that many (most) were of my own making), I’d been to some awful places and used to carry that ‘baggage’ around with me. I needed to turn my mindset around.
I started using my experiences to educate others by volunteering with a youth group. I could see these young people making the same mistakes I did and from my experience I could say “Ahh don’t be doing that 'cos this is where it can lead…” They were being told similar things from many ‘Do Gooders’ where my information wasn’t coming from a book, it was coming from personal experience and some young people respected me for that. Through the youth group I meet some people with disabilities and started supporting them. I went and did a bit of study, got myself a piece of paper (a qualification), then a job teaching people with disabilities, which I did for near on 20yrs, never dreaming that I’d end up being the one with a disability. ohh well…
We have all had our own unique experiences and been lucky enough to come out the other side, (maybe a little worse for wear lol) but there are others out there just starting their journey and if we look back at our own journey and how daunting it all was for us, we can ALL use those experiences to assist those newcomers, to educate them in the fact that sure life has changed, but it hasn’t ended. There is a light at the end of the tunnel and that light is not always a train coming in the other direction. Using our negative experiences as a positive to educate others and this gave me a meaning, a purpose for all of those negatives.
OK, so, sure, it wasn’t a straight through process but it has given me a life I never in my wildest dreams thought I would have, but it started with simply offering someone who was struggling a helping hand.

Merl from the Moderator Support Team



I think I’m going to come back and read this here piece every day.


Maybe even more than that.

God has used you to bless others my friend and God has blessed us through it. I think it is probably safe to say he’s blessed you too.

Thanks, thanks thanks


I’m surprised there aren’t more responses to this wonderful post! I’m so glad it showed up in my email summary.

Since you asked, lol -

First, cooking. I got an Instant Pot (pressure cooker) last year but it took me a while to get up the nerve to actually use it. The cookbook “Vegan Pressure Cooking” (JL Fields) has some good recipes I’ve tried.
My all-time favorite cookbooks (not pressure cooking!) are by Nava Atlas, especially Vegetariana (to be fair, I have the old, old edition that was before her then-teenagers became vegan). She’s got a lot of recipes on her website too. I’ve just had really good results from her recipes. Not everything is low calorie but in general that type of food is relatively low-fat, if you aren’t going to dishes with lots of dairy.

Second, for your social justice work, faxZero.com. You can send up to five per day free, and they already have all the Senators and Governors and so on listed so you don’t have to hunt down the fax numbers. I compose a letter in a word processor sometimes, and sometimes I send just a short message on the cover sheet. I am sure there are other similar services.

As far as exercise, I’ll just say again that water exercises made all the difference in the world for me. I had daily water PT when I was in inpatient rehab, and when I finally could drive myself to the Y I started doing water exercise classes there. They are mostly women but there are guys in my class every time. I started out in the gentle “arthritis” class but I like the regular class better. My balance was so, so, so much better in the water, where there’s more support, and I think it allowed me to get more and better whole-body exercise as well as help with the balance over time. Also check out chair yoga - I still have issues when I swing my head up and down, making regular yoga problematic.

About the Social Security: I’m not in that boat myself. But I’ve been on a long-term cancer survivor email list for many years now, and it’s an issue that has frequently come up as people develop worse and worse late effects from treatment. More often than not it takes years, including automatic rejections and doctors’ statements and so on, and some states are worse than others. Good luck but be prepared to be patient.


Tom, check out ediets.com – it’s basically an online nutrition and diet service. For about $150 a year you can get upwards of three receipes a day and complete weekly shopping list for the chosen meals all organized for you. You can also print it all off and save it, making your own cook book of sorts. Not only do they have a vast database, but it’s all balanced, you can customize options for your particular needs, and, in my case, it helped me lose 125 pounds. So, not only will it introduce you to cooking and shopping for food but it will give you a project to create a cook book for you and your family!



What great ideas! I agree with elizabeth k: this is a great thread!

I love a food or recipe challenge myself, so I did a quick search to see what was out there. Look what I found! (search keywords were dinner recipe ideas for family)

So start with choices from a collection of seventy-three recipes which are probably pretty reliable and practical, and see how the kids do with that. But don’t let them loose looking for recipes on the internet: finding recipes that are tested for reliability and which use standard methods and ingredients can be surprisingly difficult. (In my before-Ben’s life, I was one of those old-school Home Ec Teachers.)

Thanks, Azurelle for mentioning eDiets. What an interesting service!