Living with OPMD

What do you do for fun, in spite of OPMD?

Jersey Girl
65 posts
February 1, 2015 1:14 PM MST

Hi all!

I thought it would be interesting to hear how all of us have adapted to our OPMD symptoms, and what we do for fun that is different and enjoyable that we didn’t do before we began having symptoms.

I’ll start, lol. I guess the things I’ll begin with are what I did before, that I can no longer do. I loved hiking in the woods. Living where we do, in the rural northern Midwest, there are lots of them. But rather than dwell on the fact that hiking is out, due to leg weakness, I am looking into buying an ATV. That will be “my legs”, and I’ll get to cover a lot more ground than I did even when I was in the best of shape!

Since walking and climbing have become issues, boating is pretty much out, as well. I have always loved to fish and there are a lot of parks that have accessible fishing piers now. Otherwise, I try to accept everytime I get an invitation from a friend with a pontoon boat, as they are lots easier to get on and off of. One of those might be in our future, too.

I use the Internet a LOT. I’ve taken up genealogy and am having fantastic results; I’ve traced my paternal line back to the 1600’s. There are some great online classes for people who are into genealogy. They provide insight on resources that beginner and intermediate genealogists may never have considered. I’m going to be taking one of these classes in the Spring; it focuses on Scottish genealogy and is offered by the U. of Dundee.

My husband and I are brushing off the chessboard. I used to play with my stepkids when they were younger, but have never played with my husband. As fierce ‘Words With Friends’ opponents, this should be interesting, lol.

For those who love gardening but can’t kneel, bend, stoop or get up off the ground; try straw bale gardening! A google search will explain it; better yet, do a search on Pinterest since a picture is worth a thousand words. It is simple, inexpensive and great for us OPMD’ers. It provides an instant raised bed, so to speak, and requires very little work or expense to get started. You can grow vegetables or flowers. We are doing it for the first time this Spring.

We have also found someone who will “rent” bees and the things you need for them from April to November. We plan on setting them up on a cheap table I picked up at an auction so that they will be easily accessible to me, and not on the ground. All we have to do is share the honey with the person we rent from, and this way we don’t have to worry about bee loss or feeding them during the cold, snowy winter months.

Go swimming! Most YMCA’s or even local high schools with pools have hydraulic lifts for people who can’t use the stairs to get in and out of the pool. Once you are in the water, you will feel as though OPMD is a figment of your imagination because you are FREE of any leg weakness limitations! It is a fantastic feeling, and even if you don’t engage in classes and just doggie paddle around for an hour, holding onto the side of the pool, its a great workout.

I owned horses all of my life and haven’t been riding in a while. But one of our local stables has a handicapped riding program. While I don’t need the program itself, being able to use their ramped mounting blocks will allow me to get on a horse and ride again. All I have to do is make sure I stay on the horse, because it would be a long walk back for both of us if I couldn’t get back up in the saddle, lol.

I’d love to hear from others and share ideas of how we can still have fun!

jonana
8 posts
February 9, 2015 8:58 AM MST

I found your post on having fun so inspirational.! I plan to try and start making a list of things I’d like to start doing ! Thanks ! :heart:

Jersey Girl
65 posts
February 9, 2015 10:19 AM MST

Let me know what you come up with, jonana. The more ideas and inspiration we can get from one another, the better!

Jersey Girl
65 posts
March 27, 2015 2:04 PM MDT

What do you look forward to with the warmer weather right around the corner?

I’ve had to give up gardening, because my legs aren’t strong enough to bend, kneel, squat or get up off the ground. But my husband and I learned about straw bale gardening this winter and we’re going to give it a try!

While it was not initially developed for people with disabilities, it turns out that is just PERFECT for us! You can even stack the bales two high if one bale isn’t high enough.

Since a picture is worth a thousand words, here is a link so you can see how it works:

and for more info —

http://strawbalegardens.com/

Just google straw bale gardening; there are a zillion articles to help get you started and its CHEAP and EASY!!

Jersey Girl

jonana
8 posts
March 27, 2015 2:33 PM MDT

Here in Florida when summer arrives we do indoor projects ! Have a few pots with vegetables! Then off to beach to cool off !

Jersey Girl
65 posts
March 27, 2015 5:07 PM MDT

My husband and I are retiring to southern Alabama. We plan to spend summers in Wisconsin, where it rarely gets above 80 degrees and is not humid.

Best of both worlds!

I have quite a few Chickens. Though, my wife hates them, as I can’t care for them on my own, and threatens to get rid of them. Good thing she likes my GSD. I used to enjoy taking care of them, building coops, cleaning them out. I built them, so I didn’t have to hunch over. Building, cleaning, and caring is not gone, which is probably the major reason my wife resents them. So, message boards, creative writing on my own time. Though, I find that I get lost in writing, and after sitting for too long, I feel like my lower body hurts. But, it is a great escape to create. I used to paint and draw as well. That would be a little rough to do now I suspect.

I used to enjoy hatching my own eggs, and watching new life peep into existence. This time of year we get an abundance of eggs, and with the salmanila commercial egg epidemic, it feels good to know where your eggs come from. I suspect if it is not raining next Sunday, she will expect me to cull some roosters. It is hard work from start to finish. If I do two in a day by myself, I am in agony for a couple of days after. I have been trying to teach my son. But, he still gets worried about removing the innards and contaminating the meat. But, there is no flavor like the birds you raise yourself. The birds in the supermarket are like cardboard in comparison. If you chill the meat for a day, and then let it slow cook in the crock pot, you get little pieces that fall off the bone and are easier to eat. The rest turns into Chicken Noodle Soup if someone is feeling ill.

I am a musician with a degree in Cello Performance. Cello is out of the question now. The pelvic/hip instability and shoulder/upper arm weakness make Cello playing feel like wrestling a small child. I am an accomplished pianist, also, and still play every day. I volunteer at a local hospital which has a grand piano in the lobby of their Cancer Center, and play standards for a couple hours a week.
I am also a woodworker/cabinet-maker. My “shop” in is my garage - which limits my time to about 9 months a year, due to the lovely Chicago winters.

1 Like

Nobody else does fun stuff?

You made me laugh, Longave, with your description of playing cello feeling like wrestling a small child! I’ve never played cello, but I get it. Playing old standards in the Cancer Center sounds like it’s pleasant and smile-inducing for everyone!

Dan, if you’re into creative writing, we would love something from you for our weekly news bulletin! What do you have in your file that other rare disease peeps might like? (I’m guessing plenty!)

Seenie from Modsupport

I challenge myself to get up, get ready, and go to my local Senior Center. There I have met many friends, My friends include me with many activities. Wii bowling, I stay seated on the chair to video bowl. My friends challenged me to play ping pong. Yes. Ping pong. I would approach the table on my forearm crutches. A friend would take them from me. I would make like a tripod with on hand on the table and my legs to form a tripod. Then, even though, stationary I could volley. Of course my friends would have to gather errand balls. And of course, I could not move side to side. I have fun thanks to the many friends at the Senior Center.

And I’ll bet you have lots of laughs, which is, of course, the most therapeutic thing of all!

More power to you, roberts!

Seenie from ModSupport