I’m going crazy this time of year! Claritin in the morning and Benedryl at night are the only way I can breathe. I guess I should try a humidifier in my room, that might help. What doesn’t help is all the dust I have in this house from cats, dogs and parrots. I do have a whole home air purifier and portable room purifiers to help with that.

I was thankful this year to spend Thanksgiving with my Dad and his wife at their home. I was very lucky that after my surgery to straighten my spine, after four years of therapy and healing, I have been able to begin driving again, and can now travel a few hours on the road. I also am walking pretty well, although I get fatigued easily. If… Read more

Dani I’m sorry for your loss. Losing a close friend or relative is heartbreaking. It seems that there have been more deaths close to me this holiday season, and my Dad is very ill annd we don’t know when we will lose him. this has affected both my mind and body. I know that my depression has been rearing its head more so than in the last 7-8… Read more

I am really frustrated with insurance this year. I went on Covered California and my plan has gone up $200/mo. to $529 which is a lot on a fixed income of $1475/mo. Plus I still have a house payment, supplemental costs and seven animals besides myself to support!

But when I looked at other plans to compare, I found my normal doctors but none… Read more

I have 7 pets that I had before I was diagnosed with MD. 2 dogs, 3 cats and 2 parrots! Since my diagnosis, my experience with neuromuscular scoliosis 75° and my spinal surgery to insert rods from T10 to S1, I find that I don’t have the stamina or strength to keep up with all of them. I’ve had to get help, and in my case I have a roommate that… Read more

i’ve been watching on and off. I love gymnastics, swimming, track and volleyball! The street skateboarding was also awesome this year!

No I haven’t heard of it Lea. I will look it up. Thank you

I sometimes don’t think people understand that I am disabled because I am still walking without the aid of a cane or walker. They don’t understand how fatigued I get just by doing normal things or walking too much. It’s really hard to explain to people. I just don’t think they get it because they don’t see a visible disability.

I haven’t dated since I’ve been diagnosed with muscular dystrophy three years ago. I’ve had two major surgeries and then Covid hit. I need to start getting out more but I don’t even know where to start trying to meet someone. I’m a little bit afraid of the online dating apps. But I’d like to find somebody who has similar interests and well… Read more

I had never heard of them. But I am going to follow them now! It sounds like an interesting group to be a part of and maybe there are even people like me out there with Myofibrillar Myopathy. I know there are, but finding any information on my form of muscular dystrophy it’s so very difficult. Sometimes I feel like I’m alone in the world😔

I’m happy to say that I didn’t have many side effects from my second vaccination. My arm was sore at the vaccination site, and I was a little tired for a few days, but other than that things went just fine! hopefully by next Sunday (2 weeks after) I will be fully protected. But I will still be using my mask and keeping my distance.

I am interested in hearing more answers as I am getting my second vaccination tomorrow!

I don’t live in either of those states, but I think that they have acted very prematurely. Lifting the mandates is dangerous before we get more people vaccinated.

Speaking of the vaccine, Dani do you know if muscular dystrophy will be one of the high risk conditions that will get early vaccines?

Since this whole Covid thing started I have been more stressed and of course been in the house most of the time. I find that I crave baked goods, which I never used to eat. Cookies and danishes, muffins etc. I feel like I have definitely put on the Covid 15 that they talk about. Not sure if it’s exactly 15 pounds because I’m afraid to get on… Read more

I have received the two stimulus checks that have been put out so far. I’ve mainly had to use them To pay bills, but I have spent a little bit on myself. Just things I need and that will help me enjoy life a little more.

I do have some retirement savings from when I was working, but I just fear that it will not be enough when the time comes.

I completely understand. I too have a hard time saving money. I’ve been on disability since 2009 and of course but a fixed income it makes things difficult. Especially when you have to pay for help to come in and do housework, cooking etc. I just can’t do the things I used to do so I spend most of my extra money on help. Fortunately both of… Read more

I think I’ve learned how fragile life is, and what it is like to feel helpless against something that no one can seem to control. I’ve also learned the value of family and friends, and that we shouldn’t take for granted being able to see and socialize with them, hug them or tell them in person that we love them.

I’m not sure if there is a national registry for Myofibrillar myopathy. I know it’s rare and I never see articles or information about it posted on the site. It’s kind of frustrating to have a type of MD that you can’t find any information on. All I get is from my neurologist. I guess I could ask him if there is a national registry. It would… Read more

I miss my family most of all. Being able to see them in person and touch them/hug them. Some of my family is older and we have to be safe and stay apart for now. But my dad has health issues and I worry so much about him but don’t want to go see him during this period. It’s been a really hard on me and causes a lot of anxiety

This year has made my depression and anxiety even worse. I would love to hear some others give ideas on how they relieve their 2020/COVID-19 blues

This year will be only myself and my roommate having Thanksgiving, unless his son comes over as well. It’s just too scary to go out right now. I’d love to go visit with my dad for Thanksgiving but he has so many health issues that I would hate to bring it into his home if I had it and did not know it. And he says the same for me. We both have a… Read more

I have a really hard time reaching my toenails because of my fused back. So far I’ve been able to cut them by myself, barely. But I dread the day I have to have someone else do it. I don’t mind getting a pedicure, but it seems weird to me to have to ask a helper to cut my toenails. Does that seem weird to you

My tremors come and go. I noticed that they are worse after I have been to physical therapy and my muscles are tired. And also when I am under a lot of stress. I suffer from anxiety so that doesn’t help the situation 🙁

When I first noticed them it was in meetings at work when I would try to drink coffee out of Styrofoam cups. My hands would… Read more

I have had arm and hand tremors since I was in my 30s but I was not diagnosed with MD until 2018 when I was 55. I now have neck tremors as well sometimes. I saw a neurologist at UCSF and he said they were not related to my MD but were Essential familial tremors. That’s interesting that you have them and they are related. I have Myofibrillar… Read more