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  • Aging from a Chronic Illness Perspective

    Posted by BioNews Staff on October 6, 2022 at 8:00 am

    A lot of people don’t like getting older. From a chronic illness perspective, many find it exciting and celebratory to get older and surpass one’s life expectancy. This isn’t universal, but living with chronic illnesses and disabilities adds a unique lens. 

    What are your thoughts on aging?

    Tina replied 7 months, 1 week ago 11 Members · 17 Replies
  • 17 Replies
  • Delia Hernandez

    Member
    May 26, 2023 at 3:54 pm

    Myasthenia Gravis (MG) is a manageable condition, and most individuals diagnosed with it can lead fulfilling and productive lives. While there is currently no cure for MG, available treatment options such as medications, plasma exchange, and thymectomy can improve a person’s symptoms and quality of life.

    With proper treatment and care, the majority of individuals with MG can expect to manage their symptoms well and maintain daily activities. However, the severity of symptoms varies from person to person, and some individuals may require additional assistance or accommodations to perform activities of daily living.

    It is also important to note that the condition can be unpredictable, with periods of remission and exacerbation, requiring regular medical check-ups and monitoring of the condition’s progress. Individuals with MG can benefit from adopting a healthy lifestyle and learning stress management techniques to prevent symptoms from worsening. Engaging in physical exercise, a balanced diet, and getting enough sleep can also help maintain overall well-being.

    In conclusion, while MG can be a challenging and unpredictable condition, most people with this condition can lead fulfilling and productive lives with the proper treatment, self-care, and management. It is essential for people living with MG to receive support, regular medical check-ups, and take an active role in their treatment to manage the condition effectively.

    • Cheekster

      Member
      July 12, 2023 at 9:47 am

      I’m worried I’ve gotten to the point I don’t even know when flareups happen. I feel like I’m always flaring up or in flare up mode because some of my muscles don’t work. I need to be on low dose meds and supplements. I think something is happening to my legs lately and my knee area. I am unable to climb stairs like before and the muscles just wont go. I need to do more stair work and intake more protein and get meds for my MG. Just walking is not helping at all. I will need to put my big girl panties and get to working on the muscles and getting on meds and daily supps. I have access to a free gym that has the things i need. I just had surgery so i will need to be strong when taking the bus or uber. I dont know if massages will help but they might help to relax me. I might need to get regular massages to help de stress my head and relax. All of this is stressing me out enormously like nobody will ever know. i might end up dying from stress and not diseases lol

      • paul spychalski

        Member
        August 25, 2023 at 5:41 pm

        I AGREE! I look like a drunk walking around, double vision and the rest of the MG symptoms, I’m tired of living.

    • Maria

      Member
      August 23, 2023 at 5:04 pm

      I’m very happy for those that can live that normal or almost normal life. Mine is not. I’ve had MG over 30 years. I’m double antibody negative, which I know plays a huge part in my situation. But when I was first diagnosed doctors told me I could live a normal live. I’ve tried every treatment that a doctor said was a possibility. So I think you can understand how frustrating I find it when people say a normal life is possible. For the newly diagnosed it brings hope, which may be false. I think all outcomes should be discussed.

      I had to quit working years ago. I no longer drive, very seldom travel anywhere, and need help walking on a daily basis. That is not normal. I’ve made adjustments that help me find joy in this life. I think making those adjustments would have been easier if I had not tried to find and live that normal life.

      • Cheryl

        Member
        August 25, 2023 at 8:22 am

        I am with you Maria. When I had to stop nursing at 58 for blurred vision,proximal weakness, fatigue, shortness of breath. I was told it was aging because seronegative for MG,labs all over the place and with 2 muscle biopsies they couldn’t be definitively identified. Five years elapsed with multiple horrible interactions most ending with being told since they couldn’t diagnose, they wouldn’t treat and besides its probably menopause, aging or inactivity!! Now 66, still an enigma being triple sero neg but responding strongly to mestinon, living on SSDI,scared about what real aging issues with look like, grieving what I thought my life would be in my 60’s.

        Cheryl

      • Maria

        Member
        August 25, 2023 at 9:39 am

        In addition to the Mestinon, I’m on 20mg of prednisone daily. I know that it has some bad side effects, but the good outweighs the bad. Found a doctor who finally said if it looks like a duck, it’s a duck. And began treatment. But that took me a couple of years. Best of luck!

  • Bambilin

    Member
    August 21, 2023 at 11:16 am

    I got MG when I was 76, five years ago. The first year was terrible until I got on IVIG for about a year while my mycophenolate started working. I take mestinon and prednisone, too. The second year was back to normal. Then COVID hit! I just hunkered down at home and gave up playing bridge twice a week with my friends at the bridge club. Anxiety and isolation took a toll. Even though I’m well vaccinated, I fear going out to socialize. I’ve steadily gotten weaker. Never had a crisis. But I’m not sure how much of the weakness is from having 5 more birthdays. I struggle with the ups and downs of physical and brain fatigue. And, with accepting my limitations. Fortunately I have a very helpful and understanding husband who pitches in to fill the gaps I leave.

    • Maria

      Member
      August 25, 2023 at 7:28 pm

      COVID was a scary time. Especially at the beginning. I was very scared. I’m still cautious about where I go. And like you, I do have a husband who is very helpful. I don’t know what I would do without him. Best of luck and wishes for some good days.

  • Paul Dube

    Member
    August 25, 2023 at 3:11 pm

    Getting older is the ability to manage losses. Having MG only complicates this process. As we age, I am 78, we are faced with things we can no longer do or do at a slower pace. I would love to bike ride again but it is no longer possible but I compensate with other less strenuous activities, like riding a three wheeler. Of course, it’s not the same but I make the best of it. Best to everyone, Paul Dubé

  • Wayne Eisen

    Member
    August 25, 2023 at 4:32 pm

    Maria and others taking prednisone, it’s possible to counter the side effects. I’m on 40 mg a day. I’ve been loading up on collagen in super smoothies and, believe it or not, I’ve INCREASED my bone density. I used glipizide and metformin, along with sugar when necessary, to try to keep my blood sugar between 70 and 180 as much as possible, with the help of a 14 day continuous glucose monitor.

  • Wayne Eisen

    Member
    August 25, 2023 at 4:42 pm

    And I’m constantly checking my glucose, by the way. I’m switching neurologists and hope to get prescribed for Vyvgart. I’m 74 years old, and I have more health issues than there is room to cover in this posting. 🤣

    • Maria

      Member
      August 25, 2023 at 7:24 pm

      Sorry you have too many health issues too! As if, MG is not enough. Thanks for the info. My bone density is a problem. I’ve been on prednisone for over 30 years from 10 to 100 mg a day. I can use all the help I can get. Best of luck with the neurologist!

  • Wayne Eisen

    Member
    August 26, 2023 at 8:47 pm

    Thank you for your kind thoughts, Maria.

    Collagen made the positive difference in bone density. A lot of collagen. 😆 I’ll let you know if I’m successful convincing my new neurologist that I should get Vyvgart.

    Have a great week! Wayne

  • Wayne Eisen

    Member
    August 31, 2023 at 5:34 pm

    I just got back gmfrom my 2nd opinion neurologist appointment. I’m being referred to a neuromuscular specialist. They’re the only ones who can prescribe Vyvgart at Kaiser. We’ll see.

  • Peggy Supplee

    Member
    September 1, 2023 at 6:29 pm

    MG has taken my life and given me an existence. Vyvgard has helped me do basic things like clean house, do laundry and maybe fix a decent meal occasionally.

    My dog and I are in service dog training which we both enjoy but it is totally exhausting.

    If things don’t get done by 2pm they just don’t get done.

    Honestly my dog is the only thing I enjoy and the only thing worth living for.

  • Maria

    Member
    September 1, 2023 at 8:33 pm

    I’m so sorry, Peggy! Thank God for our dogs!

  • Tina

    Member
    November 3, 2023 at 3:13 pm

    I hear everyone and agree. I was always positive minded but MG has cut a huge swath out of that mindset. I cannot keep up with my tasklist I designed to keep myself active and positive. I should be enjoying my retirement but I literally feel like I’m drifting out into deeper water and can’t keep my feet on the bottom. I can’t keep up with anything I start. My days now just feel like I try to keep up with whatever is going on around me. It’s hard to stay focused and on a schedule. Alexa is my taskmaster and I just ignore her when I feel like it. For the most part I’m happy and I have a lot to be thankful for. But I feel like I’m slipping more into old age, I’m aware of it but it feels like I’m less aware as time goes on. I don’t know if that’s normal, but for me, it’s not. Maybe it’s just worse today, when I’m having an MG day, but overall it seems like I’m losing some mental acuity from this enemy. Yesterday my new dermatologist said I have systemic inflammation showing up on my face and she can’t treat it because my medical condition is too complex. So now I’m watching this MG ruin my facial skin too in addition to the eye and facial muscles. Not happy about that since I always worked professionally and took care of my skin and wore makeup. It’s like MG is moving more of its baggage into my space and I’m not happy about that. So that’s my aging with MG. I didn’t plan this of course and I’m frustrated with this situation

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