Tagged: exercise, health, hope, Myasthenia gravis, sports
- This topic has 11 replies, 11 voices, and was last updated 1 day, 15 hours ago by Celeste M Matthews.
July 28, 2021 at 7:23 pm #16608Michelle GonzabaParticipant
In my latest column, I talk about how my recent experience of playing golf for the first time in years gave me hope for the future. I also talk about how the Olympics inspired me to put more effort into my physical health.
What sports have you been able to play since your MG diagnosis? What sports do you miss playing? How do you take care of your physical health while treating your MG?
July 28, 2021 at 10:28 pm #16618Cyndi DeHoffParticipant
Michelle, I am so happy you wrote this article and to hear of your successful day on the golf course!
I was an avid tennis player before MG and I miss the sport and my teammates very much! I am no longer able to play tennis because I have significant respiratory weakness so I needed other options.
I bought a pedal assist bike which is a huge game changer for me! I am now able to bike ride for several miles at a time with other people. This bike allows me to give myself a boost of power when I need it when going up a hill or when my muscles get tired. The bike makes me feel like a did before MG.
I am now planning outings and vacations with family and friends to ride bikes. The only downside is they are expensive.
I love team sports and I sometimes think about joining a pickleball league. But then I think about all those people who would need to understand that MG symptoms come and go and that one day I may play and not be able to the next. Then I think ,ugh,and i dont do anything further.
September 2, 2021 at 5:36 pm #17013Michelle GonzabaParticipant
Hi Cyndi! Apologies for the late reply. I totally agree about team sports. I used to play softball and basketball and would love to join an adult league, but I have the same thoughts as you. What if I get too weak to play and have to explain myself? It’s slow going but I’m trying to build up the courage.
I love biking too! I’m a little embarrassed to say I only just learned how to do it, but I’ve been going on longer rides the more comfortable I get. Bike riding trips with friends and family sounds amazing!
July 30, 2021 at 3:35 pm #16627Terry Leslie KerrParticipant
My sport being marathons – ran my first in 2012 at age 65, now 74, completing 33 full and 22 half marathons. In 2017 I first noticed something wasn’t right, low energy, fatigue, no endurance. Diagnosed in 2018… prescribed meds are useless, Prednisone – (yikes got off that in a hurry) Mestinon (no improvement). Have ocular, swallow & Gen. MG, feels like running with 20lb bags of wet sand (lol) strapped to each leg. Only able to run 2-3 pole distances, then necessary to walk one, repeat for 26.2 miles.
Any runners out there in MG Land willing to share their formula for success?
August 3, 2021 at 5:44 pm #16661EDWARD CLAGHORNParticipant
Great to read that you are getting out to play again. Diagnosed in February of 2020 and on a number of meds. They help my symptoms very much. Throughout my time with MG I have continued to go to the gym and ride my bike. I ride often and typically ride 35-65 miles. This year’s goal is 4000 miles. I am careful right after IVIG infusions and in extreme heat but in general feel very good after my rides. That said, I do get cramps in my legs at night after the rides and also in my hands. My vision gets better as the rides progress. MG has made me much more attentive to what my body is telling me NOT to do. I am careful.
September 3, 2021 at 7:38 pm #17037Jacqueline MarquizParticipant
Oh, how I long to be able to run the way I used to. I really enjoy doing half marathons. I have a busy life, so I don’t have the time to actually train for a fall. I also play several hours a day of tennis. I wish there was a recipe for being able to figure out how to run again. Right now I’m only able to do 3 to 4 miles. My MG has progressed to the point that my upper leg muscles are deteriorating/wasting. I’ve done lots of tests to try and figure out what’s going on. I now have numbness in my lower legs and feet. Going to try two weeks of prednisone. I’ll let you know how that goes. I would love to hear if anybody has figured out a medication to help with fatigue?!? :))
September 3, 2021 at 7:56 pm #17038ChrisMParticipant
I always loved my sports. Soccer, basketball, track. Always kept fit post university while juggling family and job. I’m sure my fitness helped me through full sternal thymomic surgery, 5 weeks of radio, a crisis and subsequent battle, with a huge steroid dose and almost eternity to taper so that I’m finally now only on mycophenolate. I have pushed myself to keep exercising every day possible, even if just a walk. I try to run (I call it a joddle for jog/waddle) but 5k about once a week wipes me and my legs tingle and feel uncomfortable for a few days after. Swimming is a blessing. But it’s a daily battle, mentally and physically, to press on when the sofa would be the easy option.
September 4, 2021 at 5:09 am #17054Jonathan AParticipant
It is hard to know if one can go back outside and play again. Restrictions were losing up finally with the “PLAGUE from CHINA” but now the DELTA VARIANT is closing places again. On my way home after giving up 9 vials of fasting blood yesterday (three requests to SONORA LABS by three doctors), I was starving and stopped at WHATABURGER … their dining room doors were locked up (drive thru only) … so went to McDONALDS. Their dining room was roped off .. so I ordered inside but had to take my food home to eat. They were open after my last doctor’s appointment before … but now they were closed again. So I am worried about how many gyms and sports locations are closed again.
I am coming out past my comfort zone, and willing to drive further now that my eyes, fingers, and calf muscles are in MG REMISSION. But will anything be open? When I had time “pre MG”, I was biking, scuba diving, figure skating, horseback riding, doing tennis, and swimming. But suddenly having un-diagnosed MYASTHENIA GRAVIS for 8 months, and spending 5 months of 2020 in five different hospitals, my eyes and all my other body parts died every three or so hours.
But I am in remission now (since 11-27-2020)… and want to carefully get out more and try my land legs. I had to spend 4 long months in the first three hospitals (as they could not get me an MG diagnosis) … and they would not let me out of bed FOR THREE MONTHS. So I had to learn to stand in therapy and walk again from the start. Your arms do not remember to sway back and forth … when you have been in hospital wrist restraints for the first three months … so you would not try to sleep on your side again or have horrid nightmares ….. and tear out all the IVs and feeding tubes and air hoses.
I was wanting to get back home and get in my swimming pool and soak and limber my legs again … and swim exercise. BUT I was in the hospital from February thru June 2020 …. and during that time …. almost all of my 25,000 gallons of Arizona pool water evaporated away …. and I just don’t have the legs yet to whip it back in shape and get all the palm fronds out of my naked pool. But you guys have encouraged me to try something else or try to find a pool that is not closing down after LABOR DAY. THANKS…
September 4, 2021 at 1:02 pm #17057Amy CessinaParticipant
I golf , ride a electric bike , walk a lot, hike, some resistance training. Basically try to keep moving no matter what. I know it’s hard but in the long run it’s better for your overall health. But we all have different symptoms so getting the ok from your doctors is important. In the midst of severe weakness of course this wouldn’t be safe. If I’m honest with myself the first 30 -60 minutes or so of golfing or hiking I have pretty bad anxiety about something going wrong like I’ll get weak but I tend to settle in after that. I guess PTSD creeps in but I am able to rid myself of it after a while. I wish I didn’t do that but right now that’s my reality. (My symptoms are mostly in my face/neck /mouth, my limbs so far are not affected)
March 18, 2023 at 3:53 pm #20856Joe ManleyParticipant
I’m 73, living in central Maryland, having been diagnosed with MG for about 2 months. Think I’ve had symptoms for last 6 months or longer. I’m taking a daily heavy dose of prednisone and pyridostigmine bromide which has helped my condition, not seeing double vision now but having side effects, like diarrhea, leg cramps and rhinitis. I’ve been playing Pickleball since retirement in 2015, almost daily, losing 60+ lbs. over that time as I’ve become addicted to this fast growing sport. Now my extremities have me slower, legs feeling mushy and endurance a big problem. My energy level becomes depleted quickly and just can’t do what I use to do, giving me a high level of frustration and depression. I’m now on depression pills for it. This disease has already affected my eyes, face, throat, hands and legs and my mental well being. I take more naps now and will see my neurologist next week, after 8 weeks wait. I wanted to see her sooner but doctor didn’t have any openings. I’m dealing with type 2 diabetes and PMR too, so I’ve got my medical issues as you all do and guess I should be grateful for what I still have, in that I can still play, my favorite sport, Pickleball! Wish you all the very best in your MG journey!!!
March 22, 2023 at 3:49 pm #20865kenneth j. bialkowskiParticipant
I am 73 and have suffered from MG for 6 or 7 years. After 2 hospitalizations I had a course of Rituximab which worked wonders. Now on daily Prednisone and once weekly Cuvitru infusions. This combination has allowed me to return to sports. I a back playing USTA competitive tennis (for my age group) and can get through a 2 hour match. However, I am exhausted afterwards. I also manage to play 9 holes a few times a week. I am waiting for Vyvgart to be approved in Canada at which time I will talk to my neurologist about it.
March 23, 2023 at 10:00 am #20870Celeste M MatthewsParticipant
I ride my horse. It is more complicated than it used to be. First off, I can’t get on the horse without a mounting block. That means that when I ride off, I really need to stay on the horse. I have to call for help if I fall off. I also had to modify my saddle so that my stirrups hold still. I cannot go a long distance. I am able to enjoy riding through the woods and enjoying nature.
I am on mestinon. Anything else that I have taken have caused life threatening blood pressure spikes.
I telework. I am lazy a lot. But I do keep going.
Also add to my exercise list, shoveling manure. Grooming.
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