I thought it might be interesting to start a discussion on how individuals have coped with letting go of favorite activities that you can't do anymore because of SBMA.
For example, I used to enjoy bicycling a lot, but due to weakness in legs and cramping, I have already had to cut back to very short distances, and I can see the day will be arriving when I can't do it anymore.
Obviously the answer is: "Suck it up, and find a substitute activity," but I would appreciate any thoughts you may have on feelings about losing a favorite activity and what substitutes you found. Thanks.
Dan, this is a good topic and one I have addressed in my blog. Thanks for including it in the forum.
- Sailing (no substitute for this)
-Hiking in the great outdoors ... especially the mountains (I have a golf cart that gets me around the neighborhood lake and forest area)
- Going for long walks with my wife (no substitute for this either ... using a wheelchair or scooter just isn't as intimate)
- Bicycling ... we used to ride together everywhere (using a wheelchair or scooter just doesn't quite do it either)
- Playing tennis ... it was more social than competitive
- Playing racquetball ... this was very competitive for me and the best workout
- Jogging ... I especially love to jog on the beach
- Traveling ... we use to travel quite a bit, but it is very difficult for me to travel these days
We still go to certain events and take some nature walks (she walks and I ride), but access is limited and it just takes away the spur of the moment activity.
What I miss the most is walking hand in hand with my wife when we go out.
I now write (short stories, a blog and also I am working on a novel). I spend several hours each day supporting the KDA.
One health issue I have is severe osteoporosis. Many of my falls in the more recent years resulted in broken bones. For this reason I had to give up some of the above activities earlier in my life. Yet, I am healthy and have a great wife and family that supports me.This message has been edited. Last edited by: Bruce,
Location: rochdale. england.
Hi Dan and Bruce. I am the same regarding walking. I can manage only ten yards using two sticks, if I push any further my legs give way and I am down. I use a scooter which is kept in the car so that we can go shopping etc... Sometimes I like others, are unable to get into shops because of steps etc... This infuriates me sometimes as the point of the visit is thwarted, as I cannot get into a shop / store. Breathing is a particular problem with me so trying to use the stick is not an option. Yes simply walking is what I miss the most.
Hmm, that's a long list. Dirt bikes, street bikes, hang-gliders, airplanes, snowmobiles, skiing, snowshoeing, canoeing, kayaking, back-country travel, and it's getting to the point that I can no longer even fly R/C planes. I have a Polaris Ranger side by side now, kind of golf-cart with suspension, that I can still get in and out of.
Yes, I can empathise with Dan, Bruce & Cam regarding outdoor pursuits. I used to love mountain biking, hiking and windsurfing. I had to abandon the latter many years ago (just too demanding on strength, stamina and balance) and my cycling is restricted to gentle country lanes, all the time being aware that my slowed reactions could result in a tumble. Yet I know how truly fortunate I am that I can still cycle, take the dog for a walk and carry out DIY. Reading Graham and Bruce's posts is a salutary reminder of how my condition may progress; my legs have become ever more prone to buckling at relatively little provocation, I become breathless quite quickly and laryngospasm episodes have increased in frequency. Frustration surfaces when I have to ask for help with things that were once second nature, but I keep reminding myself that I have to be thankful for what I can still do, and make the most of it whilst it lasts. As for alternatives, I'm considering trying Tai-Chi at some point in the future, as that seems likely to help with maintaining muscle tone, flexibility and balance.This message has been edited. Last edited by: John B,
I performed Tai Chi for several years and then moved on to Qigong when I could no longer lift a leg and twist or turn without falling. They are both excellent disciplines while you are still mobile and I recommend them highly. I still practice abdominal breathing and meditation because they continue to be helpful.
Kennedy's Disease Association
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