Karina Jeronimides

Hi Isabelle,

Your reply has really depressed me. I see my daughters, we also text and call.  i have an aide twice per week to help me get ready for work. i just had lunch with  handicapped friends.  My students are adorable.  And yes, this disability is tough.  I have many odds against me.  But i rejoice in still being able to live alone and t…[Read more]

When on Facebook, I love reading the FA group messages, but they also depress me.  I love it when I can help someone out, but otherwise, it gets me down to read how others are so miserable and the tons of issues that we must or will have to deal with.  It kills me to think that soon I will lose my independence and be forced to live in an i…[Read more]

I feel like my main goal is to survive and to fight for what I have:

1/ fight to keep my job. despite the hoard of non-believers, and my exhaustion.

2/ fight to keep my home, and make it accessible.

3/ fight for a higher income , and figure out how to get enough help that i can afford.

4/ keep on mustering the courage and energy to tackle…[Read more]

It was a real hassle getting to my sister’s this year for Thanksgiving.  It was particularly hard because nobody, not even my kids, seemed to realize that my abilities are different. And I had to do it on my own.  Inside her house were more challenges…  I cried dry tears during the dinner at seeing what they all  could do and enjoy, and how muc…[Read more]

Thank you Christina for the suggestion.  Jeff, let me tell you more about my investigations.

I’ve tried myrbetric- one dose per day then two as my urologist recommended.  Myrbetric really helped at first, but two doses caused blurred vision. Dr. Lynch, my neurologist, highly discouraged 2 doses of myrbetric.

My urologist then prescribed v…[Read more]

Bladder issues is one of the worse symptoms of FA, along with dysarthria. It takes away one’s freedom of movement.  I thought the worse thing about FA was being wheelchair bound, but it’s not at all.   And the remedies out there for bladder issues just do not work for anyone who wants to live an independent life.  I would love to just have a cathe…[Read more]

Dear Katie,

I am so sorry for your loss.  I will miss your columns.

I have had to face many losses, and I don’t think goodbyes are ever enough.  It doesn’t matter how much you say goodbye or how often.  The pain will always be there, and it will be excruciating.  Your entire world will turn upside down, and at first you will be paralyzed and una…[Read more]

Katie, I am a mom too, so I cannot imagine how difficult it must be for you.  Lots of hugs.  Karina

I have FA, so it might be different for you, but the frustration you feel at things constantly collapsing on you  is probably similar.  My therapist says I have walking depression.  I don’t agree with her.  I just push through by getting things done in spite of the odds because I’m hopeful for a better tomorrow. And i know that my struggles mat…[Read more]

Hi Christina,

Yes, I used to until I started using an electric scooter full time.  And when that happens, it’s essential to have a spare and extra battery chargers.  Because stuff gets damaged and repairing them can take months.  So skip the stress I underwent living alone, working and raising two kids as a single mom!!

Best,

Karina

when i could still walk, i would say that i’m a Wheeble Wable that does not fall down”  I even put two Wheebles on my wedding cake.

when you have to describe FA with marbles in your mouth “neuromuscular” is too long of a word. your description is too long.   most importantly, it’s not really worth explaining it to others as they usually respond with such pity and sorrow, that my spirit is crushed and i only think of the negatives in my life.  the fact is, i’m doing lots of gr…[Read more]

Thank you for checking in! I’m not at al used to it, and it’s very nice!  I remain optimistic in my physical assessment of covid as no physical complications ensued.  The logistical complications, however, multiplied. For one, my teenagers feel it’s ok to be more reckless as their mom handled it with no major physical issues.  Otherwise, and un…[Read more]

How to be a Latin lover – on netflix.  let me know what you think  My teenage girls liked it too.

The antigen tests do not work.  Both of my kids and I got false negatives when we were infectious with covid.  My oldest daughter took it twice and both times it was negative.  Only when my symptoms where really bad did I finalLy test positive.  Otherwise, there is no way I could use those tests on my own – I have FA.

I went to a wheelchair clinic to be evaluated by a PT who does only that.  The process is very lengthy . But my power chair is really helpful.  The place that fixe my old scooter is the one that told me about the wheelchair clinic, and they helped the PT with insurance technicalities.  I had never heard of a wheelchair clinic – they are all lo…[Read more]

I have FA and two teenage daughters.  The older one caught covid because I allowed her to go out with her best friend who had the virus and only realized it 3 days after they went out.  It turns out that on Christmas, my 15 , 17 year old and myself had covid symptoms.  All three of us had been vaccinated and two weeks before the accident, I got a…[Read more]

myself! got left by husband, father, mother who is taking care of my younger brother whose FA is worse. i know i am not the only one. there are so many brave souls who fight to make it on their own.   it’s scary being all alone.  but it pushes you to be stronger .  i was having trouble transferring to bed , 6-9 month ago, and i’ve done so much ext…[Read more]

Hi Christina,

I’m quite worried about this actually.  I took the Johnson and Johnson vaccine in April, which is the least effective, had horrible spasms for 6 weeks after, and now a booster is being given to the other ones that are apparently more effective.  I go back to the classroom on August 31st, and I am nervous (more about my FA than c…[Read more]

Knowing that the change will end is what helps me.  And working viciously to fight it with PT/doctors/new procedures or/and adaptations that will make up for my loss of independence.  But yes, change is the hardest part of this illness, and figuring out what to do to make up for it. I hope OMAV can give us all a break from it.  If it doesn’t we ne…[Read more]