I live in Philadelphia, PA and as of 8am this morning, the mayor of the city announced that public and private gatherings outside a single household is prohibited, with certain exceptions such as grocery shopping or medical reasons.
This is worrying because of the unknown of when this will end. Has any else hometown set the same rule? How…[Read more]
I was due to have my annual checkup appointment with my neurologist the end of this month. However, I just found out that the in-person visit of neurological and heart testing portion is now delayed for at least two months because of the coronavirus. I was disappointed because I like to see how my progression is measured year after year a…[Read more]
A part of the yearly check-ups with your neurologist for FA, seeing cardiologists crucial. Heart conditions and cardiomyopathy can be symptoms of FA. It is important to get routine heart tests of an EKG and Echo-cardiogram.
I get these tests done every year when I go for my one visit. How about you? How often do you see it cardiologist?
I used to be an outpatient for physical therapy at a local hospital. Once I learned the exercises and became sufficient with them on my own, my physical therapist gave me the same program to complete at home.
2-3 times a week, I work on my core, balance and stretching exercises. I feel as though this helps builds strength back in my legs…[Read more]
I have a stationary recumbent bike to use in my apartment when I can’t go outside. But when it is nice out, I like to ride my Catrike recumbent trike ina local park! I agree that it helps regain independence and freedom back as walking becomes more difficult to do.
This clothing line offers adaptive clothing while still being stylish to children and adults with disabilities. TH has given the disabled community a new, easier way to dress with magnetic button shirts side zipper pants and more!
What type of clothing would make getting dressed easier for you?
FA patient, Leah Alstin came up with the concept of a user-friendly reusable cup for people with fine motor skills. The reusable cup label Ruby Seven (named after her children’s middle names) which sees $5 from every sale forwarded to the Friedreich’s Ataxia Research Alliance (FARA).
For clinical trials, there can be limitations for patients to participate. For example, location and eligibility are major decision makers.
HIV Therapy Etravirine just announced it will be entering a Phase 2 Trial and to be eligible, patients must be able to complete a functional test of riding a stationary bicycle in a laid-back reclining p…[Read more]
I love when I visit my parents because they have a treadmill to work out with. I love going on the treadmill because it really helps me focus on my balance and walking. I start off at a slow and steady pace, then gradually increase my speed.
Does anyone else like to use the treadmill for your routine workout and how do you do so?
Did you know the Friedreich’s Ataxia Research Alliance (FARA) Ambassador program hosts monthly teen hangouts? Last night was February’s, but be on the lookout for March’s! This is a great way to connect with other FA’ers your age virtually.
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