MemberApril 6, 2022 at 4:48 pm
I make sure that I take my prescribed medication (Mestinon 4 times a day). I am a grazer and thus eat 6 smaller meals a day thereby allowing my body to get a steady flow of food. I try to eat sensibly.
I was diagnosed 40 years ago, and began physiotherapy to manage pain and mobility over the years. Thank goodness for my therapists.
Make sure your footwear is optimum and fits properly. I also wear custom made orthotics (from physiotherapy) so that the shoe is working FOR me and that I am balanced when I am doing physical activity.
My go to excercise is pretty much just walking these days. Invested in an apartment sized treadmill..set up right in my apartment living room so I am sure to use it.
I learned that I have to Pace myself so as not to exhaust my body. Excercise is with QUALITY not QUANITY.
MemberApril 10, 2022 at 3:55 pm
I am a dance teacher outside of my full time career so I do try to “participate” in everything I’m teaching. I do have to give myself breaks at times due to muscle fatigue, but staying on top of my mestinon helps a lot. I still experience arm weakness so there are things I can’t do anymore (10 push ups). Otherwise I take walks with my toddler which are less exhausting to my muscles!
MemberApril 6, 2022 at 7:12 pm
First thing out of bed, I do a moderate set of stretching and strengthening exercises. My muscles are at their best at that time. And I keep the routine moderate, so that I look forward to it and don’t feel like it’s drudgery.
I include caffeine (about 4 cups of coffee worth) in my morning meals. Then I feel energetic for the afternoon.
MemberApril 6, 2022 at 10:08 pm
Before I retired, before I was diagnosed with MG, I bought a small farm (30 acres) outside of Houston Texas. Since my diagnosis, I no longer sell products at a local farmers market. I don’t do near the farm chores I used to do. However, I do a lot more home chores. I vacuum, do the laundry, clean the bathrooms, take care of washing the dishes, basically, do what I can. I spend an hour, five mornings per week, walking in a therapy pool. I miss feeding our livestock guardian dogs, milking our Nubian Dairy goats and making cheese, and feeding our various livestock. Not my dream for retirement, but I am still as active as I can be. FYI, the farm looks beautiful from the top.
MemberApril 7, 2022 at 2:05 am
Hello. For me, swimming is my absolute go to for exercise. I can stretch, do water aerobics, and swim as many laps as I am able. One of my favorite things to do is just tread water. Having been a swimmer my entire life, I find this relaxing and allows me to breathe deeply using the light pressure of the water on my chest as resistance to taking deep breaths. The only negative is how hard it is to get out of the water! Going from near-weightless to once more having gravity – ugh.
I’m also a big fan of circuit training at my local gym/YMCA/Planet Fitness (whatever your preference) for weight-bearing resistance exercises and walking on a treadmill, ellipticals bikes, and most dreaded the stair climber.
You’ll see that I like my exercises to be in a closed protected setting where I can stop to rest whenever fatigue starts to win the day.
As others have said, I stick closely to my medicine regimen. Finally I keep a journal to celebrate milestones, understand better where how my body is reacting, adapting to and my plans. It also helps me pinpoint issues to discuss with my support team.
MemberApril 8, 2022 at 9:26 pm
We have to force ourselves to do things even when we do not want to. Not always easy because all of life’s other issues seem to come into play.
Depression is always a factor, when I can’t do all of the things that I used to enjoy!
MemberApril 8, 2022 at 9:56 pm
One consolation that I’ve found is that, being retired, I can now do things at my own pace. (Sometimes I may spread a 2-hour project over 4 days, etc..) During my working life, there was always the feeling that I should rush.
MemberApril 13, 2022 at 7:15 pm
Nice to have the luxury of time, now you are “retired”. There is still a lot I have to do with homes, farm, family, etc. Much of which cannot be put off “days”. Usually the only things to be put off are the relaxing/recreational activities that are most valuable and recommended by doctors! My unique factor, to complicate things is that my wife has moderate Alzheimers, which keeps me more than busy and stressed out. My doctors say the extra stress can contribute to MG symptoms! We are all different!
MemberApril 13, 2022 at 8:36 pm
<p style=”text-align: left;”>Besides MG, I have spondylitis, and asthma, as well as neuropathy in my feet. I was diagnosed with Myasthenia last August, two years after being hospitalized for a virus and multiple pulmonary embolisms, followed by shingles. The symptoms of MG began shortly after that. I was so weak, I was unable to walk to the car.
I found a neurologist who specializes in MG, and after beginning Mestinon, my eyesight improved. I changed my diet to fresh, healthy food. I began Physical Therapy, invested in a good pair of shoes and slowly began walking outdoors with my husband. During winter I tried the treadmill, but only for for short durations due to balance and respiratory problems. My excellent physical therapist had me try a Nu Step machine. It’s often used by MS patients for rehab. It made such a big difference that eventually I purchased a used machine for home. This machine provides a cardiovascular workout in a comfortable seated position. It has an adjustable seat, elliptical arms and footrests. The screen monitors heart rate, steps, calories used and time spent working. I get a good work out now, for the first time in years. My strength and confidence have increased, and I’m excited to try to resume gardening again.</p>
The Therapist I work with has worked with MG patients before. PT reduces depression, and provides gentle home exercises, allowing me to feel like I am a partner in my care. These machines and similar ones, can be found in most rehab and park district facilities and health clubs. Medicare covers PT. All you need is a prescription. Some PT companies offer a free ride if needed. I began a skeptic and now look forward to my visits.
MemberApril 19, 2022 at 1:24 am
I was diagnosed August of 2021. Since then I have been in crisis twice before October. I got my neurologists blessing to start an exercise program one month ago so now every other day in the morning when I am strongest I put on a video done by PT students of Texas university that was made for MG patients specifically. They produced 4 videos,3 exercise videos and one yoga video and they have one person doing standing exercises while another person doing chair exercises. I do balance exercises every day that my Physical therapist assigned to me. Also every day I do cardio, either walking on the treadmill or going for a walk with my husband. I am not saying it is easy, but I treat exercise like medicine, I may not like it but it is necessary for my survival.
MemberApril 19, 2022 at 1:38 am
Is that exercise video available online?
MemberApril 19, 2022 at 2:49 am
I am new here so I am not sure if I a can put the url link here. If I can I gladly will. It was sent to me by my support group leader and they are free. In the mean time, they are also on utube
Type TEXAS WOMEN’S UNIVERSITY PHYSICAL THERAPY in the search box. There are five videos, the first one is watch me first. It has the instructions about how to do the exercises. Hope they help .
MemberApril 20, 2022 at 12:20 am
I found Video #1, but have not yet located the introductory video or the others.
BTW, you can put links in your responses here. The moderators check that there’s nothing harmful, then post your message.
MemberApril 20, 2022 at 1:24 pm
These are the links to the exercises they are both the same if one does not work try the other
You can find all the content at this link: https://tinyurl.com/mytux23s
MemberApril 20, 2022 at 10:15 pm
Got it. Thanks.
I may add some of their exercises to my daily routine.
They said MGers should only exercise on alternate days. For me exercising briefly every morning is better, unless I’m going to be doing something physical, such as mowing the lawn.
MemberApril 20, 2022 at 2:47 pm
Mainly walking now! We have a dog so every morning we take her to play ball and walk. It’s normally about 1 1/2km if I go over 2k it’s tomfar and wipes me out for the rest of the day. May do a shorter walk early evening but often it’s just not possible due to general fatigue.
MemberApril 24, 2022 at 7:44 pm
I walk a lot. But last year I invested in an electric bike and it’s great. I can keep up with my husband I just turn it on it has three levels of pedal assist and it doesn’t need a lot of effort at the top assist. Worth every penny.
MemberJune 13, 2022 at 1:37 pm
Water aerobics has been my lifesaver! Exercising outside of the pool last just a few minutes before fatigue sets in. With water aerobics I can do a full hour workout. The cool water makes such a difference with my muscle stamina. The added benefit is engaging in a group activity.
MemberJune 15, 2022 at 11:40 pm
It sounds like most of the respondents are generally in better health than me—I have chronic respiratory failure from MG and up until 2 months ago was sure to walk with 1 crutch around the outside of my house (with numerous breaks) ~ .2 mi, and go up the stairs 1/d (down does not work safely for me—gravity takes over..I have an elevator in the house).
I get PLEX every other week which keeps me at a baseline I can deal with.
~2mo ago I had severe Back pain (to the extend that when I put weight on my right leg I was suddenly on the ground before noticing the intense pain. After a few week of hellish pain and inability to get an appointment with anyone who could do anything helpful (I did get an MR done showing severe foraminal narrowing with root compression on the right side at L4/5 and L5/S1 with moderate to servers narrowing at L3/4. This is due to a congenital abnormality which is now becoming prominent from age related degenerative changes (I’m 54). I finally went to the ED and they admitted me for evaluation— I got steroid injections into L3/4 and L4/5 which made movement and transferring possible again; however I can no longer walk for more than a few steps with my crutch before the pain become unbearable and my leg starts to shake..I finally saw my neurosurgeon (I’ve had prior neck surgeries) who said there is nothing he could do given my MG and the risk of making things worse.
I’m staying as active as I can and do my PT exercises. I’m managing the pain with advil and gabapetin (Neurotin). I’m really concerned that I won’t be able to walk again.
Is anyone starting/ has started from a functional level like mine? I want to try swimming again, but my pulmonologist. Is against as I’ve had numerous respiratory infections and tend to micro- aspirate and with the heat getting out of a pool may not be feasible.
I’ll keep moving but want to do more
MemberJune 15, 2022 at 11:52 pm
Have you looked into a local indoor pool? We have community and private fitness centers that have indoor pools. If a water aerobic class isn’t appropriate for you any other option might be exercising at your own pace during open pool times. Before I started attending classes I simply walked the lane for 30 minutes until I felt I could handle a structured class. Even in a class situation you can work at your own pace.
MemberJune 16, 2022 at 1:04 am
Have you looked into a local indoor pool? We have community and private fitness centers that have indoor pools. If a water aerobic class isn’t appropriate for you another option might be exercising at your own pace during open pool times. Before I started attending classes I simply walked the lane for 30 minutes until I felt I could handle a structured class. Even in a class situation you can work at your own pace.
MemberJune 17, 2022 at 8:03 pm
First off I would like to say … I have MG, it doesn’t have me. I am 66 years old and have had MG for 29-1/2 years. My first year was rough because I was used to being on the go all the time. It took me a good year to figure out I’m good for about 30 minutes and then I have to rest for a bit. I live alone, mow my own yard (1/3 acre) with a push mower, I shovel snow in the winter. I live in upstate NY in the snowbelt. Last October I started attending an Osteo/Bone class. It’s mild exercise, twice a week for 1-1/2 hours. It’s just moving … no racing heart, no sweating … just moving joints and balance exercises. My doc wasn’t sure if I could handle the class or not, but I’m doing great. I have been on Imuran for 29 years, was on Prednisone for the first 11 years (100mg a day for about 6 of those). I only see my neuro once a year, but more often if needed. I haven’t seen him since the September 2019 right before Covid. He calls me once a year to check on me and because I’m doing well I don’t have to go in for a visit (an hour away). In January 2012 I had a neuroendocrine tumor the size of a quarter in my pancreas, so I had a central pancreatectomy. The surgeon said it was about a 12 week recovery, but it was closer to 20 weeks for me, but I’m doing great. Now I am going through skin cancer on my left hand. I had surgery on my knuckle in December and three weeks ago I had a spot the size of nickel removed from the top of my hand. I’ve been out of the bandage for 2 days and am doing well. My hand and fingers are swollen, so I can’t make a fist. I’m using a stress ball to try to get my hand/fingers working again. All in all, I’m doing great … I don’t give in to the MG. the best thing I can recommend is to keep a positive attitude, do what you can and listen to your body and don’t give up!
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