Because the long awaited Boston Support Group meeting at MGH is going to be this Saturday, I thought I’d resurrect this blog.
First of all, I want to apologize for having stayed away for so long. I also want to wish all of you a good year ahead. I really like this sentiment, written by Janet Rebhan: Continue reading
Today is International Ataxia Awareness Day. Back in June of 1998 I had never heard the word. However, by the following month, the word “Ataxia” had become all too familiar. It was really scary for a mother of a 2-year old and a 5-month old baby. But now I look at my now 19 and 17-year old and realize how much we’ve spread the word. We have reached countless playmates and their parents, classmates and teammates. Not to mention all the groups I’ve participated in over the years. However, there are still lots of people out there that have never heard the word “Ataxia”.
It so nice to have a place to go and a mission to accomplish where I can go to just be Donna and not be defined by Ataxia. Crazy Acres in Ipswich, the farm where Denim is from, is one of those places. I volunteer there a couple times a week and when I’m there I am the “laundry-folder”, “supper-dish-preparer”, “dog-dish-washer”, “dog-cuddler”…Granted, I wouldn’t be there if it weren’t for my Ataxia but when I’m there, I don’t FEEL that is the reason I’m there. I’m there because I enjoy it there. I love what they do there and I want to help where I can. I love watching Denim run free in the arena. I love watching her stand up in the backseat of my car, tail wagging when she realizes where we’re going…
I know I’ve mentioned it before, but after last night’s wonderful celebration, I feel I need to mention it again. Because I regularly volunteer at Service Dog Project (SDP) where Denim is from, I was invited to last night’s celebration and met many other people that give so much to this wonderful organization.
I frequently attend different events put on by Northeast Passage at the University of New Hampshire in Durham. According to their website, “Northeast Passage, founded in 1990, is a nationally recognized leader in the provision of innovative therapeutic recreation services. Northeast Passage delivers disability-related health promotion and adapted sports programs throughout New England. Northeast Passage is a program of the University of New Hampshire and is an affiliate of Disabled Sports USA.” Visit www.nepassage.org for more information. Continue reading
Sometimes, we just need to be willing to make a change. OK, this wasn’t a necessary change, but we moved to this house over 14 years ago and all that time our knives were in the farthest most right compartment in the silverware drawer. However, a couple months ago, my daughter suggested that I was too stuck in my ways as she didn’t see why the bowls HAD to go in a certain place. Oh, she made me realize that I didn’t like being accused of not being flexible enough and that some changes were in order. So I not only moved the bowls, but also switched my spoons and knives in the silverware drawer.
This lousy weather makes me want to return to a fun adventure some friends and I had back in the spring of 2013. Our vacation in Utah was spectacular! However, I do have to admit that some excursions proved to be more of a challenge than they would have been before Ataxia.
I have found myself worrying too much about what others think. When my kids were little maybe that philosophy was somewhat justified. I did not want my children to have to deal with the repercussions of having an “odd” mother. One example comes to mind. I can remember one time when my daughter was little (maybe 1st grade or so) and her classmates were playing ball in the schoolyard when it got away from them and started rolling down the street. Being nearby, one of the children yelled to me, “Mrs. Gorzela, can you stop that for us?” I didn’t know what to do. I obviously couldn’t run down the street after it. But I was concerned how it would look for my daughter, if I just flat out refused. So I cooly threw my backpack at the ball and lo’n behold, it actually landed in front of the ball, stopping it! Then I could just walk over to it and pick it up. The kids cheered.
Hey everyone welcome to the New England Ataxia Support Groups under the National Ataxia Foundation (NAF) blog. If you have signed on to this group, you have the ability to publish, comment, write, and upload pictures if you wish. You can share ideas, issues, concerns, research, or new findings on here. The general public can see all posts and comment on them.
Let’s start by introducing ourselves. Include a picture if you want, putting that post in the introductions category and then providing contact information under the Contact Info category. Just go to the top right and click “new post” and type away. Don’t forget to choose a category (on the right side). You can always start your own categories too! To invite other members of our support groups to this blog, click the globe on the top left, then ‘visibility’ then ‘users’ then ‘invite new’. Make sure to add all new people as ‘administrator’- Donna