Here’s some more answers to questions we’ve received. Keep them coming!
How can friends and family be most supportive?
Our friends and family have been great! All we can ask is that we not be defined by MS but that you support us in our journey. Educating yourself, learning about the disease and educating others is the most important thing you can do. We’re doing this blog to help educate people and keep everyone in the loop but for you to learn more and make sure you have an understanding is what matters.
The best way to support Gary is to just be normal.(He obviously didn’t grow up with my mom who taught us all that being weird is better than being normal…so sorry, Gary, if my family acts weird ALL the TIME). MS is not what he wants to talk about 24/7 but if you have a question, do ask it. He’d love to answer it. But be ready to listen as well because he can talk and so his answer might be a little long-winded.
Side note: Julie and I had a discussion last week about her comment on the post regarding how sometimes she asks me how I am and I’m pretty short. I’ll say “fine” or “I’m good” and sometimes that might come off as short and unwilling to talk about the MS. My question back is, if Gary didn’t have MS and you asked me how I was, and I said “fine” would it still come off as short? In some cases, yes, I believe…in others – no. Just food for thought.
Would Gary like more involvement from us then he has right now? Like would it help to call and ask him more how he’s doing? Or is he content with talking about it when he sees us and such?
You don’t have to call unless you normally call him anyway.
What’s an example of a time MS hasn’t impacted Gary, but you felt that friends and/or family misunderstood?
This is a good question, but we need some more clarification. We can’t think of a specific moment when we felt misunderstood by friends/family and we don’t want to offend anyone by saying everyone misunderstands, but for Sadie there is this general sense that people don’t know a lot about MS – I don’t and I still don’t. Gary didn’t until his diagnosis. People act surprised at his symptoms, or wonder why he’s so tired, etc. It’s part of our title to our blog because we’re referring to MS as a whole, not just our experience – the symptoms Gary experiences compared to Montel Williams symptoms compared to Richard Pryor’s symptoms are all so different. People would be surprised by how many people they know that have MS. The misunderstood part of our title is referring to people’s trigger reactions when they hear someone has MS. We’ve had people break down and cry, others say there is cure right around the corner, and others say – what IS MS? We don’t necessarily feel misunderstood, but we think the disease is misunderstood.
Are there any alternative treatments that you have come across to help? I was just thinking that acupuncture might help since it helps with the flow of energy and such, but I really don’t know. What about diet? Does smoking or alcohol make it worse?
Good question. Yes, but for some reason they all want a lot of money. Haha. We’re not kidding, though. There is Lorenzo’s Oil which might help, but it’s very expensive. We continue to track those who use it and might try it in the future, but not now. Google Myelin Project.
That’s it for now – hope everyone is wonderful!
Gary's Gang 