Disease vs Illness & Excersise
I refuse to categorize MG as a disease, as it sounds too.negative and dismal. MG could / can lead to it being fatal, but mostly if not treated _ combatted. If properly treated, an MG patient ill.live a full life.
As to excersize, I believe in pushing myself as much as possible, not letting this illness defeat me. There are days I can do more than others, but I will keep on trying until I can not go on.
In the last 10 years, since I was diagnosed with MG, my wife and I have been on 8 ocean cruises. We've been on various mini.vacations (3 to 5 days.each) and we have planned a 2 week vacation to.Europe this coming year.
I go to the gym 5 days.pet week, an hour to.90 minutes each visit, depending on my strength that day.
I know I will not live for ever, but I will live my life enjoying my time in this planet, and enjoying myself in the company of family and friends.
I WILL NOT GIVE IN TO MG, I will fight it the whole way. So..my parting words, take good care of yourselves, but enjoy each minute of the day.
Meds / treatment I went through: mestinon, imuran prednison and bupropion to lift my depletion. I was gradually taken off the imuran and mestinon, no longer taking either. As for prednisone I'm still on it, down to 5mg every other day. For the past 2.5 years (+/-) I've been getting Vyvgart infusions, 4 shot cycles every 3 to 4 months, and I've not had any flare-ups or crises since. Vyvgart infusions have helped regaining my strength
I describe my MG as a DISORDER - not a disease. My immune system is OUT of ORDER and destroying my acetylcholine. Blessed to be diagnosed quickly enough at 75 yrs old, RXs have controlled symptoms and I pay attention to what I can & cannot do anymore. NOT a disease!
KEEP A POSITIVE ATTITUDE, DON'T GIVE IN TO THOSE WHO BRING A NEGATIVE ATTITUDE TOWARDS A FUTURE. When I was first diagnosed 10 years ago I thought the end was near, and I'm still here. My wife and I just got back from a two week road trip, vacation, and now planning a one week cruise to the eastern caribbean. I.will make sure to meet with my neurologist before embarking and bring my meds in the cruise.
The only drawback I've experienced, has been the heat wave we've had this year, so I stay hydrated and stop once or twice to regain my breath/energy, but aside from that all is good. Stay positive, and you will defeat this ILLNESS.
Best wishes to you all.I am 72 and 4 years into this journey. Not what I planned for this late in life but here it is. I have told all of my doctors that I plan to dance at the wedding of all my grandchildren. The youngest just turned 8, so we have work to do. It is a partnership with the doctors, family, and me. I refuse to give up on what I do, though it may take me longer to do things. My daughters and 3 of my grandchildren leave in a month for England and Scotland. This is our second trip to Europe. We went for 3 weeks to England, Scotland, and Italy 2 years ago. The point is do not give in or give up. Listen to your body and your medical team - and get busy.
