Karina Jeronimides
Forum Replies Created
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Hi Katie,
For me who do not have a mom or dad or spouse, only FA, traveling is most definitely a pain. I feel like I need to pack my house to go anywhere, and pay a fortune for very mediocre or nonsense access. The world is not perfect and makes it incredibly difficult for one with a disability to go anywhere. I really think that our government should subsidize some of the cost of our traveling, at least when renting a mobility van or a train. Otherwise, would it not be wonderful if there were aide service at hotels? Who can possibly pay $30 an hour to have an aide go on one’s vacation? Also how awesome would it be if one could rent a handicapped taxi at a train station?! However, the prospect of thinking that my window is as far as my world view gets is unbearable. I envy vagabonds / bums.
On a more positive note, Washington, DC , very close to where I live, has a decent public transportation system (busses and metros and even taxis with ramps if reserved in advance). The hotels have crappy access even if you pay a fortune. But at least one can go places. I wish other cities in the US had better transportation systems.
Karina
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This is good news and I applaud our community for its attempts at moving this sleeping giant called the FDA who will only make exceptions to cure people like Trump and Giuliani. I am still rather depressed as after 30 years with FA, finally, a drug that palliates the devastating effects of FA is discovered. But for it to take 2 years just to get the FDA to agree to another meeting [which will take forever and which they will just deny things again while I m still breathing] to re-evaluate the drug’s effectiveness is extraordinarily depressing. It’s difficult to carpe diem when one is sleep deprived from spasms and neuropathy that wake me up 7 times t night or constipated or having incontinence and wearing a diaper. I hope they all get FA.
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I have a cat and live alone every other week or more when my kids go to their father’s house. It’s so nice having a cat when I’m all alone!!
However cats are not easy, but so much more possible to take care of than dogs.
I think she’s worth the trouble she causes.
Trouble: spills water and many other objects on the floor; coughs up hair balls in the winter, but they do not happen too much; she scratches down furniture pretty badly, and leaves cat hair everywhere. But cleaning her litter, changing her water bowl and feeding her are not an issue. I use a food dispenser that spits food for her throughout the day so she doesn’t ever wake me [she goes nuts when she is hungry]. I feed her half a can of wet food per day. She loves this. I take her to the vet once per year and require help to do that [my kids help with this]. But nobody wants to help with litter duty. Her nails are an annoyance.
She makes your place smell a little different. I use candles and open windows all the time.
Older cats are better – 2 years +. Young cats or kittens are cute but so annoying !
My cat loves to sleep and eat but mainly to cuddle. She is so lazy. [some cats are not] She jumps on my lap, and makes me go to bed at night if i work too late: She jumps on my desk and sits on my keyboard. oh, and he hates eating alone. She is very jealous of my kids. We bgot her aat the pound when she was 6 months.I hope this helps.
Karina
ps. i was a dog person my entire life.
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My older sister was my best friend. When my ataxia reared its ugly head, she mistook it for an attempt to take the center stage. As a middle child, one is often ignored. Anyways, she was mean to me, and a huge gulf still exists between us. She doesn’t get it, has put me down so much out of complete ignorance, and is too busy to see me more than 4 times a year even though we live 10 minutes away. Then my younger brother had similar symptoms, that quadrupled in time in comparison to mine, and my father was horrible with him. So I was never the center. My family moved around so much, we lost touch with almost every friend we had while growing up. Like my brother, I do not have a best friend. It’s incredibly difficult to make time for others when one is running so much to make up for one’s FA, and when normal people are so incredibly busy. When one has FA, you just have to be so incredibly selfish with one’s time. There is also the problem of knowing you ares a burden, and believing that others would just not be interested. But my daughters and my students are beginning to surprise me.
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Meds work well for a month or two only for me. After that, my body ignores it. Doctors tell me that this is common. I thus shy away from drugs unless absolutely necessary. My brother takes even fewer than I do, so when he takes anything, it works like magic.
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Frankie, that’s wonderful that you eat so well. It’s hard for me to cook or eat or shop, so I eat a toasted bagel when my bowls are loose, or a banana (if I am fortunate to have them), or a power bar otherwise. In the morning, my body doesn’t work. So I just focus on slowly drinking water without choking.
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I have FA. I was married, had two beautiful daughters and my husband left when they were 4 and 1. I raised them on my own until two years ago. We share custody. And I must say that it’s really great being divorced. He feels so much guilt that he is paying for them to go a private school [perfect in times of covid] and he drives them everywhere. But I’m older, have less function and really do not trust to be with another man who is going to put me down for not being able to walk across the room. I also wear diapers just in case I have a bladder accident how can anyone feel sexy or allow others to love them wearing diapers, I am insecure. Also, I find myself pushing those that love me away so that they are not hurt by my FA. I’m kind of down on the romance thing. I’m platonically dating someone over zoom today, but it’s not going to lat beyond the pandemic. It’s fun right now, but I just do not see a future.
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Thank you Chrisina. All the doctors I’ve consulted about gene therapy tell me it is light years away, and that I’ll be dead or extremely affected by FA and wish I were dead by the time anything comes out of it. If your opinion is different, or if you think that Novartis might lead us to some relief sooner, please let me know. I’ve been living with this illness for more than 27 years, and the promise of so many treatments that do not work is really hard to tolerate. I feel like it’s time to go into hiding, forget that there could be a cure, and just try to be happy with the limitations that have been with me for so long.
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what does this drug do? never heard of it. could you please send a link to a description?
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Hi Frankie! Yes, I have cup holder in my power chair, and I use it to hold me phone:) It’s quite handy. When I go out, I can hang my purse off the phone – the hook in my chair is really far back and hard to reach. So this is a better set up. I fill four glasses with water and leave them in my kitchen. This reminds me to drink that much during the day. Drinking is just so important to speaking, minimizing stiffness and spasms… I hate going to the bathroom, but it’s going to drive me insane anyways….
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yes, please tell me more about how you stretch!
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I am spending Thanksgiving in greater numbers than ever: from 1/2/3 to 5! Because of the pandemic my sister and her husband, who live 15minutes away, are not traveling this year, and they just invited me to their house for dinner. This is the first time that I will be going to their place for Thanksgiving with my daughters. I’ve only spent 3 thanksgivings at my sister’s house in the past 12 years, since my divorce. And my kids have never been present. So this should be fun. Having a decent meal on Thanksgiving is otherwise really hard. Thank goodness for frozen meals!
In all seriousness, I am not sure the pandemic applies to me. I’ve been practicing living with a pandemic for more than a decade now. I feel like non-FAers are getting to experience the life of an FAer in 2020, and they are all freaking out.
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When I found out I had FA, it was by phone, and I was alone. I had left to study for one year in France to write my dissertation, a month after sending my blood to Athena diagnostics somewhere in the USA, and I did not want to wait one more year to get my diagnosis. I had seen doctors and undergone exams for 7 years before I sent out my blood. Back them they had just discovered the gene affected. Not that many doctors knew about FA, and so it took a while to get an answer.
After hearing my diagnosis, I immediately called my mom, and she freaked out. She was mainly upset about my brother, who even though younger, had it worse. I had to calm her down, and tell her I was fine… It was like I had to be a rock for them. I also could still walk, well wabble, and I was enjoying my life at the time. I had a boyfriend, I was getting a PhD, I was in Paris, I had good friends. But that year abroad, was not productive. I mainly traveled with my French friends, who each at a time would hold my hand/arm to make sure I didn’t trip, and went from A to B without an assistive device.
But yes, communicating with others about my diagnosis just didn’t happen. I’m not sure I could make sense of the cruelty that mother nature had decided to hit me with. And it was only when I lived life, when I was in the company of others, that the voices in my head would shut up, and I would stop crying violently. But, yes, it was truly difficult to sit anywhere and not think about the fact that very soon, my ability to walk, to be me, and to be loved, would be gone forever. And probably that’s why I just couldn’t share my very dark thoughts with anyone, especially not with my mother who needed hope above everything else. The rest of my family was clueless, cruel and very selfish. -
The problem is the urgency. So before I open my eyes, I do ankle pumps. Even if at first, nothing moves, eventually the communication wakes up and something does move. It’s then that I open my eyes, put my feet on the ground, and press on my knees to make sure that my feet remember that they need to bear weight. Then I transfer on my wheelchair, which always has a towel on it in the mornings.
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So many amazing museums around the world became accessible w/ the quarantine. My friend, also in a wheelchair, and I had a blast visiting many different exhibits around the world (Van Gogh, Dali, Magritte). I love art history, and he’s an engineer. The difference in perspectives made it hilarious for me. Anyways, it was really fun reading what he had to say over text about the exhibits we “visited”. Having a Netflix party was also fun. I personally find that Covid has been stressing, but also highly entertaining from the confines of one’s bed/chair.
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Me too Becky, sonicare, electric. I also put a bit of toothpaste in the sink, and only afterwards I take the toothbrush to wipe it up. My brother and I, he also has FA, are really into flossing. We use those dental flossers, not the dental floss string.
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With me it’s not about acceptance or welcoming my FA. It’s about having to have gone through some massive changes, and to have adapted for my own survival. My therapist calls it resilient, resourceful and independent. I say it’s about kicking FA in the ass, before I run out of ressources. But I’m not heroic by any means. I live alone, I’m divorced from a psycho, I share custody of my 2 kids, that I single handedly raised until the ages of 14 and 12, and I have a PhD and a full time job. It might look impressive, but it’s not. It’s rough. Work is all I do. There is no fun. I mainly just collapse from exhaustion when I have free time. I don’t trust people, as most try to take advantage of me, financially, emotionally or socially. And I’m happy when I am able to take out my trash with my massive power chair. The highlight of the summer was when I was able to renew my expired license by going to the DMV in my manual chair with a girlfriend – my life is easier than for many with FA, I feel so crappy for all the advantages I have, but it still sucks majorly in my opinion. I now don’t cry that I can no longer enjoy the beach or travel, or that I’m stuck at home. I also am not as jealous of joggers or people that go on exotic vacations. My standards have changed, but that is not acceptance. I’ve had to adapt. And it gets tougher as my body degenerates. And like the fool that I am, I keep on adapting.
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Hi Christina,
For my bladder issues, I went to see a urologist in my are, per my neurologist recommendation. My neurologist said to find a urologist who had done hundreds of botox injections in the bladder, in case the urgency gets really insane. I might be headed that direction soon. I took a drug called “myrbetric” which seemed to help. The drug doesn’t affect your nervous system, just your bladder. I also wear diapers and an overnight pad in case I have accidents, and that system worked well for a few years.
For the dysarthria, the steroid injections (epidurals) I was getting for my spasms in my legs seemed to really help for aa while. My speech therapist called the difference “night and day”. She taught me strategies to improve my speech: importance of sipping water, sleep, articulating, and breathing. I also use a speaker/voice amplifier. It works as it adds volume, and so even when you are exhausted, people can understand you. Volume, not just articulation, is a huge issue.
Srikanh, I also worked out every weekday at the gym for at least one hour in my 20s/ grad school. I even bought a gym quality elliptical machine with money from a donation. I really think that my obsession with exercise is the reason why I am still living on my own at 48. So yes, keep it up!! You will be incredibly thankful to you later in life.
Best, and hang in there,
Karina
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My Tai Chis teacher in high-school, when I was 17, told me to quit as he thought I had no inner balance! It wasn’t until I was 21 that I started losing my balance when I looked up in the sky, and that I started stumbling on my legs when I tried to jog, and thus, started going to doctors to figure out what was wrong. [I did track in high-school for one year, but I was no longer the best like in middle school; in piano I would only get worse even though I practiced a ton, same with ballet]. Maybe we have similar onsets! Back then, it took 7 years for me to get a diagnosis. I did it all alone, as my mom was with my brother who is 2 years younger, and needed her attention; she did not know why. I shared with her my results, and she freaked out. She was very worried about my brother who had a faster progression. They moved to Florida soon after my diagnosis. I was in CT. I was 29 when I met Dr. Lynch. I am 48years old now, still working with an accommodation, but it’s getting very hard with my dysarthria and bladder issues. Hopefully you won’t get there! Hang in there, there is hope for you! And enjoy every day. Karina
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I personally am quite relieved as I can finally order food online again!
I have FA, don’t drive, live alone and work. Getting food was downright impossible from April to mid-May. I also was in pain for 2 months because I was afraid to go out and get my procedure done. However, I would never go to a restaurant or a public place. I’m not so worried about me, but about the wonderful people that come to my home, and without whom I could not live without – aides and PT. I am rather certain there will be a resurgence, and am so fortunate that I am only scheduled to work in a classroom at the end of August. To me this is closer to the World Wars that ravaged Europe than to a cold. And the fact that our president keeps on spreading lies about the virus makes me want to stay in lock down. -
This seems so obvious to me. I do not understand the reason for the study. Moreover’s isn’t everyone’s FA progression different?
Karina
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I am thankful for:
Alexa, who turns on my lights and tells me the weather, when I can barely get my eyes open in the morning;
the super-poles, without which transfers would not be possible safely and on my own;
the myrbetric drug, that allows me to not have to use the bathroom every 20 minutes;
my adjustable bed, which I can use as both a bed and a desk;
my insurance that pays for my aides and motorized wheelchair;
my job that gives me a reason to get up in the mornings;
my cat that will give me a cuddle even when my 2 teenage daughters act like their dad/my ex-husband;
the monthly glass of wine when shit hits the fan, the CBD oil from Charlotte’s web [ when i can’t sleep];
the epidural injections, from my pain doctor, that make my spasms bearable while improving my voice…
and the aides and PTs and STs and that one OT who showed my a trick to get out of bed…
and the occasional friend [I have only a handful who are ver busy but are really excellent people] or an extended family member [I don’t have many at all] that will add cheer to my day. -
I use super poles at home. It’s the only way for me to get into my high bed. However I don’t travel with them as they are really heavy and impossible for me to set up. Are there travel ones? And who would install them for me? Would someone in a hotel be able to do so?
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Bart-Jan, how did you find out about the conference? I live in the DC metro region and would have loved to participate.