My friend, @john-cernosek and I, both started fitness channels on YouTube for other folks with FA. There is a lot of content out there for the average person but the both of us saw a need for disabled workout videos as well.
Have you been keeping up with your exercise regiment? Would these channels help…[Read more]
For a lot of us, staying home is almost normal. We just have a scary illness to worry about catching.
Anyway, with all this extra time, what have you been watching on Netflix or whatever streaming service you use? Are you binge watching a series? Or are you watching movies?
Hey everyone, I know times are really scary for a lot of you out there. A pandemic is not something that we deal with often so I know this is all new.
Most people are getting out of school or off of work. For me, my work is at home so personally, I am not affected. However, most of my family and friends that have been sent home in order to…[Read more]
Hey everyone, hope you are all having a great day. As I was at the gym earlier, I was thinking about how often others practice any form of physical activity.
One of the biggest things I learned from my neurologist at UCLA, Dr. Perlman, she said “if you don’t use it, you lose it.” Basically, if you don’t use a certain body part or try and…[Read more]
I know that a lot of things are going out about coronavirus and what to do. We (the moderators) received an email this morning and they wanted us to pass along this information. If you have any questions or concerns, please comment below.
”COVID-19 Recommendations for the Neuromuscular Community:
Current guidelines for C…[Read more]
Whether you have a trike, hand cycle, you like the stationary recomment bikes at the gym or whatever it may be, you can find a way to adapt and keep riding a bike.
Because I still have use of my legs, I have a recumbent tricycle that was custom-made for me and my body. This helps tremendously with my independence and I love being able to…[Read more]
To be completely transparent, my diagnosis changed everything. Relationships, friendships, my confidence, my future plans etc.￼￼￼ But it was also the biggest filter to figure out who my true friends were.
I noticed over time, I wouldn’t be invited to places or included in certain things. Most of the time, it came from and uncomfo…[Read more]
One of the biggest reasons I indulge in smoking marijuana and using THC hast to deal with managing my anxiety. When I first started smoking in high school, that wasn’t the reason I fell into that lifestyle. I simply just liked getting high.
Things changed with experience and maturity. I am thankful I can look at it as a treatment aspect n…[Read more]
Although I may not be able to scientifically answer your question, I think that you were at risk just like the “normal“ population.
From previous conversations and talking to other FA patients, whenever a person with FA contracts a common cold or flu, symptoms seem to get worse. Although I don’t think you are more susceptible to ca…[Read more]
“The AAI provides adaptive cycling equipment to people with Ataxia who have demonstrated the desire to stay active and healthy despite their disabilities.
The AAI is managed by rideATAXIA, a FARA program, with a mission to promote active lifestyles among FA patients through cycling events across the United States geared towards raising a…[Read more]
In the realm of assistive devices in figuring out which wheelchair works for you, a lot of time, money and resources always seem to get exhausted.
Some people prefer to use motorized wheelchairs as it makes being independent an actuality. Most of the time with a manual wheelchair, a person behind pushing is required but the equipment is…[Read more]
There are a variety of protein powders that fit everyone’s dietary and nutritional needs. As well as having a good taste.
Some people use them for meal replacements and some just use it for a post workout meal. Whatever the reason, sometimes choosing a protein powder can feel overwhelming. There are so many options, plant-based or whey, w…[Read more]
Mental health is becoming more of a regulatory topic to discuss and I am enjoying it. However, I feel like we are still on the threshold of normalizing the conversation in general so I wrote an article discussing mental health and chronic illness.
Click here for the article.
Can you relate? Do You have mental health issues or even questions?
Personally, my relationship with alcohol has always been kind of tricky. I grew up sneaking alcohol from my parents and doing stuff behind their back and the goal was to always get as drunk as possible in the quickest amount of time Before getting caught by my parents. I guess you can say it’s immaturity or the way I learned how to drink but t…[Read more]
One aspect of working out that I absolutely love is being able to listen to my own soundtrack. I love a variety of music so some days I listen to screamo, some days it’s rap, some days it’s pop and some days it could be a throwback playlist from the 90s.
I also find it to be a key element in a functional work out. For example, I’d like…[Read more]
So excited for you to start meeting that community!! Hopefully the rain passes. Lol can’t wait to meet you!
UCLA and FARA will be putting on a scientific symposium tomorrow. Followed by RideAtaxia putting on their annual SoCal ride.
Here are the links for more information!
If you’re around,I would love to meet you!
Sometimes, it’s difficult enough to get motivated to go to the gym. But, over the years I have realized it is better to focus on a couple of muscles and target areas of the body per day rather than working out everything every day.
For example, when I first started off in the gym, I didn’t really have any direction so I would hop on any mac…[Read more]
This week, I discussed how I preferr to be in isolation. Most of my time, I am by myself and at home. I don’t enjoy going out as much and have realized how essential isolation is to recharging my batteries and accomplishing goals that I have for myself.
Click here for the article
How do you feel about isolation? Is it something you p…[Read more]
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