FDA Letter to approve drug treating Friedreich’s Ataxia

2020 was hard for everyone. I know I. am not the only one with problems. I have depression due to FA. People say “Friedreich’s Ataxia doesn’t define me, my mind defines me.” My ego has been torn up/destroyed because of this reality. I’m real as it gets.

There is a drug called Omaveloxolone by a pharmaceutical company trying to be approved by the FDA. Please sign the letter to speed things up. Sign it by January 20, 2020 through curefa.org/advocacy I thank you friends and family 🙂

3 power chairs that are lightweight, compact, and easy to travel with.

I bought a power chair last week. I do not want one by any means, but I have realized that I have been limited to basic flat terrain and trails with no rocks bigger than say an inch in diameter. I am getting by in life with what I have now, but the need has grown in my mind in the pass few months.

A few weeks ago I went to the Oregon Convention Center in Portland. Been there many of times before, but with groups of others. The carpet sucks pushing in there, and did I mention any crest/small hill is totally doable, but after a brief push up MLK Blvd. to Holliday

(Lightrail stop) my arms are burning like crazy. Not to complain- I have been doing this for years, but I am tired of pushing everywhere. Putting me in a huge disadvantage.

Like with everything, I did extensive research of obtaining one. Here is some information for persons with mobility problems:

I found 3 power chairs that are lightweight, compact, and easy to travel with.

This is essential as I remember in the 90s my brother and I taking apart my sisters’ 200 LBS power chair apart/together all the time. We got good at it, but it was a struggle (I mean I was 11-12). The chair came apart in 6 pieces: 2 car batteries at 50 LBS each, the motor body (70 LBS), seat, and the leg rests. Then when she went to college she would fly home for breaks and holidays. Airlines would always bend parts causing frustrations and working with the customer service people to buy new parts; even new chairs.

In other words, traveling in power-assisted chair was a big headache (I’d say up till 5-6 years ago). I do not travel much, but I have flown to Atlanta, Dallas, and Las Vegas in the recent past with no problems. MDA has good traveling tips fyi! I received an email from the MDA about traveling a few months ago,

also herd that a few other FA patients/families has made progressive effort to train Delta airport freight teams to treat medical assisted devices with care (in other words: Do not throw the wheelchairs in, force them to fit in cargo bays if the freight doesn’t fit, or like Ace Ventura.)

Getting back to the premise of this entry there is 3 chairs that basically look the same:

Product Location Price Weight Capacity Range Warranty
Kdsmartchair Miami, Florida USA $2,000 50LBS 265LBS 15MILES 5 Frame/ 1 other
Wheelchair88 Selangor, Malaysia $2,200 45LBS 220LBS 8MILES+ ?
EZlightcruiser Los Angeles, California USA $2,200+ 44.6LBS+ 265LBS+ 15MILES+ 10Frame/ 5Motor/ 2Battery

I choose the EZlitecruiser because the back has anti-tipping wheels. I use my anti-tipping wheels daily. These are essential to have if you have ataxia! Kdpowerchair does not have them (at least from the promotional video). Wheelchair88 has the anti-tipping wheels, but it is from Malaysia…

I mean wheelchair88 sounds good, they do have a US service center in Brea, CA- but here is the Google street view:

Wheelchair88 is a weird name too. I am not musical by any means, but what does 88 stand for? I immediately think of 88 keys on a piano or keyboard… IDK, I just need it to help my mobility, not have a weird name..

Just business warehouses; where is the company logo? Also this guy called life 2.0 on YouTube explains at 6 minutes in the service is questionable:

I literally got an email today (June 3, 2016) that the EZlitecruiser chair is arriving from China. Well I should have figured that out anyway. Everything is made in China!

Reminders are always good.

I have been preoccupied this week as that Surelock break came in the mail on Monday. Took it apart piece-by-piece to figure out how the system works and then put it on the chair. Like everything that happens to me, two pieces are literally a hair off measurement so the thing does not work.

With my amazing patience, Photoshop skills to explain the problem technically, and my ability to write emails with cohesive sentences- I am sending the two pieces back. (If the form I filled out was checked this would have not been an issue.) I expect errors. I mean where all human, but sometimes I get annoyed though… ugh. Patience… Patience Todd.

We all need reminders of how blessed we are. Take North Korea for example. The entire place is crap, but I feel real empathetic to disabled people in that country. Read The Gaurdians article about Ji Seong-ho story losing his left hand and foot. Basically he explains all of society in that country is fighting for basics needs, so disability rights is not an issue.

I cannot imagine being in a concentration camp being forced to work with no relationships of any kind . Watch about camp 14.

Shin Dong-hyuk is the only man who has escaped North Korea and is talking about it. The regime of the DPRK has changed how he views what his biological family means to him. It is interesting.

I have my good days and bad days like everyone else. I will open up to the fact that there are some days where I do not want to get out of bed because of FA. There are plenty of negative things to look out in society. In life you have to realize and accept things that is beyond our control. When life gets hard think about what other people deal with. I am blessed by not living in North Korea. Being born you have no choice of who your parents are or where on this planet.

Until Next Time.

In the meantime stay positive.

Great tip for manual wheelchair users.

I love to have water, tea, and coffee, basically any fluids accessible as much as possible at an arms reach. Being a wheelchair user I always have to think of ways to make anything work for me. Considering I have to use both hands when moving adds to the stress of simply holding a drink while walking. *cough, I mean rolling.

When I got the NOVA walker in 2010 I did not think much about this problem. A few weeks of using it I looked for a cup holder and sure enough NOVA makes one. They are okay. I mean I still have my third one. You see, every time I upgraded to another walker because of the stress fractures in the frame, I managed to crack and/or break the plastic holder. They were about $25 back then, now on amazon you can get the cup holder for about $17.50.

If your still using a walker I suggest finding a cheaper solution; Walgreens or Target has some that are 10 bucks just by simply doing a web search for a walker cup holder. NOVA’s brand in my opinion is fine, but I think a user could get a better product for the money. The cup holder is a cheap piece of plastic with two black screws.

When I got into the wheelchair I looked for solutions. Tilite has accessories for their chairs; it’s ridiculous to see that with all the “accessories” – which are over priced FYI – there is no cup holder!? I need to be a consultant with DME wheelchair companies like Tilite or Colours to give the designers and engineers a real-life user perspective using their products.

On the contrary, I found a perfect solution to add cup holders to my chair without drilling holes into the wheelchair frame or using any screws. I discovered that there is only one sports store that carries the type of “Bottle Cage” needed. Dicks Sporting Goods; not eBay, Amazon, Sports Authority, or Big 5 carries the correct rope cleat looking back of the Bottle Cage like Dicks… :/

For 6 bucks each it isn’t a problem if they break, fall off when out-in-about, or the Bottle Cage gets old. They are flexible- eventually break from medal fatigue, but worth it by allowing me to carry Big Gulps, Slurpees, Bottles, Soda cans, regular glass cups, and even mugs. Anything really! I have one on each side of my chair, love it!

To attach the Bottle Cage to the tube frame of the chair I first started with Hose Clamps available at any hardware store. Hose clamps are more work, but hold better than zip-ties. If the cup holders have to be taken off (say going through security at the airport) zip ties are faster to take off (with scissors or a box cutter versus a wrench or socket). Another benefit using zip ties is that hair on my calf muscles don’t get caught when they rub against the frame like Hose Clamps do. This solution is the most economical solution to keep drinks at an arms reach using a manual chair for daily living.

So to recap, here is what is needed:

2 Nishiki Alloy Water Bottle Cage
– Package of 6” or 8” zip ties (need 4) or two Hose Clamps.


You see, the walker I used prior where the cheapest walkers consumers can buy; Nova brand walkers. I started to use one in September 2010.

Friedreich’s ataxia causes quick jerky-like movements; as a result I cracked 3 of them in the same spot.

Now note Nova walkers are made in Vietnam- not sure of it is a quality issue. I looked more into it and I am by all means no engineer or medal expert, but there is a thing with medal known as metal fatigue. Aluminum has a less stress limit than say Titanium (What the wheelchair frame is made of).

I know others with FA with a higher quality walkers that last for more than a few months. Dashaway walkers work for people with FA, but I cannot make myself buy a walker for 1400 bucks. I discovered they are made of Aluminum too. It is a better built product and the alloy (mixture of the medal). I considered purchasing this walker a few years back.

However, when I inquired about the walker in 2014 the owner was either getting rid of the inventory of what the company had or going out of business? It made me less interested that there was only one color left, red. Not to say red is a bad color, but it is not my favorite.

Call my crazy, but when I make a large purchase I get to pick the color. We do not live in 1908 when the Model-T color is only available in black*. You have the decency to pick the color now. The owner wouldn’t budge on the price after I asked for a discount.

At that time in early 2014 I was using the wheelchair for the past 3 years anyway, so spending 1400 for yet another bulky walker is pointless. I still have my 3rd Nova walker. It has not broke yet as I rarely use it. Some standing still; walking with it is tricky as I put my weight on the handle bars to counter-act my lose of balance. I really should put 100-150 pounds of paperweight to it, but the frame will break for sure.

The advice for future FA patients looking at getting a walker? I’d say talk to as many people you can on what to get. I did not want to think about using a walker. I just went into my local medical supply place one day, looked at the two different walkers they had in stalk and picked one. Research the durable medical equipment you use!

Manual Wheelchair Brake Options

I have been using basic manual wheels for the past 4 months. While being ‘handy’ doing light maintenance such as: checking for loose screws/bolts, tire pressure, cleaning the frame, cleaning the ball bearings from the caster wheels in the front from hair, and replacing worn-out pieces- the thing is constant upkeep.

On top of all I have mentioned, ‘brakes’ are the most relied on by every person with FA. I am thinking that I stand up at least 30-50 times a day. Transferring to the car, out of bed, going to the restroom, kitchen grabbing/reaching, brushing my teeth/doing dishes standing up, doing squats, dropping things I cannot reach sitting down, ugh the list goes for ever! Putting on the breaks requires me to shift all my weight on my arms awkwardly to my wrists. Believe it or not I can tell this repetitive task does more harm to my shoulders than just pushing myself.

There are two standard breaks for manual wheelchairs.

Push to lock                                                            

Scissor lock

I have scissor lock breaks. Both style breaks only work when the person using it is not grasping onto the chairs frame for safety/assurance. In my opinion they are not locks, rather they stop the wheels while not touching the chair. When I hold the frame while transferring they might as well not exist.

I don’t have to explain much to anyone with ataxia, but to the outsiders; ataxia means I need to grab/hold/grasp onto things that are attached to walls and/or something that cannot fail if my whole body weight shifts unexpectedly when I am on my two feet. I can tell you in 2010 I was walking slowly with 2 concrete bags in a shopping cart as a counter weight and I still managed to flip it over.

Again, scissor locks or push to lock locks only work when appropriate air is in the tires, adjusted right (3 sets of 37-540 or 24” wheels are not the same!), tread is not worn, and above all rain. Everything can be adjusted right- but as soon as wheelchair tires get wet, brakes do not work. Thus resulting me falling and getting my bottom wet. Here in the Pacific Northwest it rains all the time! Frustrating.

I did a lot of research of alternative solutions and I found 3:

1 ——AVI’s disk brake for manual wheelchairs.

ADI disk brakes
2 ——D’s Locks Pin disk system.

3 ——SurelockInc – pin-lock system.

Okay so my opinion on all 3:

ADI makes actual disk brake hubs for manual wheelchairs. When I began to ponder the idea that there has to be a better braking system out in the world this product came to mind. It seems ambiguous on how it works on the wheels. I understand the Chamber Tube, Quick Axle Button/Sleeve. I see where if a wheelchair user had limited hand control while going down a hill could benefit from this, but my handgrip strength is still good enough to help me go down ramps. The company is based in Texas and has full page ads in MDA’s Quest magazine (I got a copy last month by mail.) It is cool MSRP is about one thousand, but the disk brake seems too much.

D’s Lock

They are based in the San Diego area and seems like they are the choice everyone gets. They are obviously the cheapest (at or around 500 MSRP) Called me unique, but I choose to lead my own path. Working in retail for a decade (and throughout life in general) I had learned you truly get what you pay for. Rutgers University’s Care Forum has the 2nd post show a guy has bought 5 sets for one chair! Did it break? The cable is an issue as users have had to get it replaced.


I choose the Surelock system; small company in rural Kansas to custom make me a pin-lock setup for my chair. I read forums about each system from others and even though Surelock costs a little more (about one thousand MRSP), I have read post after post that Surelock locks are better quality, more precise pinholes than D’s. Rutgers University has a great Care Forum: this post, gives a users’ opinion when he installed D’s with ¾” to 1/2” play in the pistons. Surelock maybe upto ½” play (from 9th post on this Care Forum.) Surelock’s hubs have 27 position stops; D’s has 24. The only major con with Surelock is the locking lever; users on the Care Forum explain it is bulky compared to D’s.

The company is located in Lewis, Kansas, roughly 60 miles east of Wichita. It is so rural that I cannot call them through my cellphone (my carrier works perfectly for everything else. For some reason I can only talk to Jack Roberts through a landline.

Now the pin-lock system is being made right now and will take a few weeks until I actually receive it, so I will review it in the following posts in a few weeks.

The best thing about this system is when I receive it is no more playing a game of sit/flop onto the wheelchair before it rolls away or thinking about the struggle to put my locks on during my daily living activities. The frame weighs maybe 15 pounds tops; so a power chair with weight would make since, but I want to avoid that until I absolutely need one. In the end I know not every system in life will last forever, but this will make one annoyance in my life easier.


Everyday I drink Black Tea; Lipton brand specifically. For the past 5 years or so I have been consuming it and honestly the taste is awful. I have added Honey before (The good ‘natural’ kind from Whole Foods, not the cheep artificial corn syrup stuff.) and I never put it in my tea right. The honey always condenses to the bottom: so I end up drinking dishwater until I get to the bottom. Then all of the sudden I end up warm honey near the last drop. Not cool…

I have put sugar in my tea in the past and it tastes great. However, the problem with adding sugar is (*cough* my crazy thought process is coming out) I am simi-health cautious. Adding sugar to my beverage is ridiculous… I mean how society consumes and produces food adds sugars to mostly everything; I cannot add sugar to something possibly beneficial to my health.

I mean with Friedreich’s Ataxia and not walking like I use too- I need to seriously think about my sugar intake. About 1/10 people have type 1 from this disease. If I can avoid type 2 from avoiding environmental factors by not drinking gallons of Coke I will definitely put effort in it.

Now just so we are clear- everything in life takes balance. I am by no means a health nut. I hate to admit it, but my favorite soda is DP, aka Dr. Pepper. Why add sugar to my black tea when I can tolerate it solo? I will just drink DP to balance the healthy-to-unhealthy ratio.

2016 is my independent year!

It looks like I am first on the wait-list for an accessible apartment here in Vancouver! Close to my family, employer, and friends. I should have done this 10-11 years ago, but I have been chasing a dream that I have been patiently working towards. I am coming into terms of my situation. Life is short and I need this experience.

The complex is hard to get as it is one of the very few subsidized places in East Vancouver. I signed up for the wait-list at the beginning of August (and I was #8 on the list!) with the next first level apartment available early spring 2016. Once a month I would get a call on Sundays where I was asked if I want to still be on the wait-list. If it was a voicemail they informed me 24 hours to respond or I would be taken off.

Apparently they did that with the other 8 people ahead of me because now I am the runner up!

DogFest Portland

I have always wanted a dog ever since I was a kid. My family has never been pet people. I totally understand why.

When I was 15 years old or so, I convinced my mom I could take care of gold fish. At that time I got a small 2-gallon tank, a few gold fish, a pump to keep the water moving, and fish food. I named all the gold fish and was thrilled to finally have pets, even though they were only fish.

The sad ending is that all the fish in the tank died. I discovered all of them floating at the top of the tank 2 weeks later. You see, I didn’t like the cloudy water they made after about a day. I knew it was their fecal matter and I wanted to keep the tank clean.

After flushing the fish down the toilet I was in an emotional wreck. I was in turmoil; Why? How? What did I do wrong? I cannot handle fish dying; therefore I can’t imagine losing a family member such as a dog.

I did discover after the fact that the fish tank water was changed too often, resulting putting a lot of stress on the fish. I had a friend who had a gold fish in a traditional fish bowl who never changed the water or even put fish food at normal occurrences. I fish lived for 8 years or so- so apparently I was overly prepared for my goldfish.

Having a dog is different than goldfish for obvious reasons. More responsibility, time, attention, and effort are needed. I have to look at life more positively. Yes, pets will die, people die eventually too and one day my time will end. I am going off into a tangent, but basically what I am trying to say is that I want a service dog. I can get one in a year or so as I signed up with a nonprofit called Canine Companions for Independence. Learned about it from a volunteer who came into work one day.

I forgot his name, but he got my interested. I drop nick-knacks everyday from my chair (cell phone, bottle caps, trash), literally everything and a service animal can help me pick up things, hold doors for me, switch lights on/off, and just be there so I am not alone. The best part it is that I will someone there everywhere I go. I will be motivated to go outside besides work and have more independence being safe.

Best of all, the service animal will tell my when she/he has to do their business!

My best friend has lost dogs before and I have witnessed who much sorrow it gives to people after a beloved pet passes on, but he told me that no dog lasts forever. The only thing you can do is give it the best you can through out its years.

Anyways, there is a Dog fest Walk and Roll in Lake Oswego, Oregon on Saturday September 12, 2015 from 9:00AM – NOON by Canine Companions for Independence. They are accepting donations, but if you want to just walk your dog with me or others that already/ or can benefit from this organization please come on by! Apparently there is food 🙂

Changing cards in Poker.

I am slowly changing my comfort level. I am actively looking at apartments in the Vancouver area! I should have done this a long time ago, but I have always been dragging my feet forgoing this process. I have put my life on hold ever since graduating from the University a few years ago due to two things:

A: My plans have not gone the way I wanted to.

B: I never found the opportunity after college that everyone assumes you get.

I am tired of fighting the idea of goals that are not being achieved. I need to start living for today and less occupied about the future. Looking back at my life at this moment in time I appreciate all the hard work and determination I have done. The best part is that my life is not over!

I have been ignoring the daily experiences that could have been a positive, rewarding, or at least a good learning experience- ultimately for a skewed reality that has been in my head all these years. I need to remind myself my life is not over, just because my plans have not molded into the way I wanted does not mean I failed.

The point is that I need to live for today, and not so much plan for the future. Friedreich’s ataxia is not defining my soul, but it is visual for the world to see. It is not going away and when a serious progressive neurological is in play- like in the game in Poker I need to play the cards whether good or bad. Staying positive is the key.