Episode 01 – No Longer a Game of Inches

How to Thrive with this Disability

Episode 01 – No Longer a Game of Inches

Watch my video: https://youtu.be/s0J-IRA966g

My fight against the devastating effects of multiple sclerosis is now a game of millimeters, 1.2 mm to be exact! Let me get to the point without too much rambling.

The difficulty in raising the front part of my left foot led to walking difficulties. Increased falls are a constant danger. My poor gait (the pattern my limbs move when I walk) created further problems, placing awkward strains on my joints and spine. Avalanches of issues began to put everyday living at risk. Hip and knee problems developed. I now have moderate scoliosis (sideways curvature of the spine).

This change began around 2012.

Foot drop was one of the first noticeable symptoms when I began to develop secondary progressive multiple sclerosis (SPMS). This issue predated the rest of the atrophy on my left side. Trips and falls became common occurrences before any formal SPMS diagnosis. Blah, blah, blah…I underwent multiple treatment and brace options before settling on the ankle foot orthosis (AFO).

The concept is simple. A semi-rigid carbon fiber medical device system sits under your foot, preventing it from angling down when your leg raises. Not perfect, but better!

Unrelated symptoms pop up in my life with multiple sclerosis on a regular/constant basis. Aches and pains become the effect without a direct correctable cause. Joint issues, scoliosis, you name it, they’re all there. That’s just life with multiple sclerosis. In the Army, we would say, “Suck it up and drive on.” So, I do.

Eleven years after finally receiving my first AFO, frustration over this off-balanced sensation got me thinking. My left leg feels longer. It feels longer because it is. 1.2 mm longer, to be exact. It’s called LLD, for Limb Length Discrepancy. According to the National Children’s Hospital webpage “Limb Length Discrepancy (LLD),” evaluation and treatment options should be considered “when the difference measures more than 1.5 to 2.0 centimeters.”

I have no medical training, and no medical professional ever raised this issue, but the 1.2 mm discrepancy caused by my AFO is the source of pain and imbalance in my gait. It is not the only source, but a significant cause. This is my personal diagnosis and opinion. At some point, I will review everything with a physical therapist or my doctor.

I purchased this Carbon Fiber Insole and slipped it into my right shoe. The change was instantaneous! I felt as if my balance footing was restored. My hip hurts less. I noticed a reduction in the times I catch my foot on the ground or swing it outward as I step. Increased confidence in my gait for the last four days is a welcomed reprieve from ever-worsening multiple sclerosis issues. Improvements are always welcome!! Combined with the benefits I received through my PoNS device therapy last year, I’ve pulled something back.

Take that, MS.

Here’s a link to the Carbon Fiber Insole I purchased: https://www.amazon.com/dp/B0BYNSN2Z9. Well worth every penny.

This is one thing that helps me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

 

Never Stop… Never Quit…^®

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Consequences of the Inconsequential Ramblings of a Condemned Man

Complications, side effects, secondary, and tertiary symptoms. Call them what you want, these consequences are the truly crippling effects of multiple sclerosis. My MS is not going to kill me; I can live a long, albeit hindered, life with numbness, pain, bladder problems, spasticity, etc. Multiple sclerosis will not be the direct/primary cause of my death. If all goes to plan, MS will be no factor when I die at the glorious age of 109-years old.

But, and I’m just hypothesizing here, if complications as a result of multiple sclerosis are a cause of my premature demise, here’s my top five list of ‘MS Things That Are Probably Going to Kill Me’.

5 – I will suffocate/choke to death

I should have this down pat, as I choke on food and drink all day, every day. Choking is normally no cause for alarm; I maintain a carefully measured protocol, ensuring my airway is cleared with minimal fuss or mess. It remains, unfortunately, one of my less graceful moves, as I continue to find new ways to scare the hell out of myself at least once or twice a month.

How many times can you play the lottery before you win?

4 – I will die in a fall or have an accident

There are a multitude of scenarios under the general ‘accident’ category. Many of the more likely candidates list under common activities such as driving, cooking, or swimming. I’m currently safe in all areas, or I recognize my limits and keep clear, but I do understand my ability will change more than the ‘normal’ aging man.

I don’t go in water over my head, for my comfort level in the one arm, one leg dog paddle is minimal.

Brie, can I use this is my excuse for wanting to eat out all the time instead of cooking?

I’m a good driver, a safe driver, safer now than ever before. Nevertheless, I watch and evaluate this one constantly…

Falling should be a category of its own, separate from other accidents. While I’m cautious, I still fall regularly. This past winter, I cracked ribs when I fell getting out of the shower, then again shoveling ice and snow. Just a few years back, I suffered a dual-spiral fracture while roller skating (don’t ask, it sounded like a good idea at the time); I have the titanium rod in my leg as a permanent reminder. I still push myself, for it is worth the risk to avoid becoming immobile/sedentary. I still go beyond my limits regularly, for I don't know where the moving bar is, nor is my brain ready to accept some limitations. Today, I fall often, with minimal permanent consequence. All could change at any moment. Hopefully, I will recognize this before I regret it.

3 – I will die from an infection

Medications come complete with a variety of infection potentials. In 2007, I nearly lost my leg, or worse, due to the reaction that developed into a staph infection. Aspiration pneumonia is a constant concern, caused by the food and drink so often going into my lungs. Cuts and scrapes are common; often I don’t see and cannot feel them to properly care for the wounds.

2 – I will die from a medication reaction

Reactions and side effects are plentiful, some are critical while others are just annoying.

Biotin, or Vitamin B7, is a supplement normally taken to promote healthy hair and nail growth, as well as other common afflictions related to a deficiency in the vitamin. Normally, it’s taken in daily doses of 20 to 45 micrograms (mcg). There’s preliminary evidence, and a current phase 3 trial is underway, to support benefits with the use of high-dose biotin in the treatment of multiple sclerosis. I’m currently taking 300 milligrams (mg) daily, the equivalent of 300,000 mcg! As you can imagine, my hair and nails grow at a phenomenal rate.

Some of my medications cause nausea (take with food, take on an empty stomach).

Many of my injectable medications over the years have caused bruising and other site reactions.

I would love to know what the heck I am taking to give me such incredible/offensive gas!

Then there the bad reactions I’ve experienced: bacterial infections, staph infections, gastrointestinal reactions, anaphylaxis, meningitis.

I am on an immunosuppressant, which reduces my body’s immune system, I get it. Medications are one area where the Army Strong mentality of, “give me what you got, I can take it!” does not apply. I can’t take it, so please give me only as much as I need.

1 - I will kill myself

This is a hard phrase to imagine, even harder to write. I honestly have no idea how far down the rabbit hole I went on my other trips, nor do I care to find the answer. I don’t want this to happen, and am shaken to the core merely discussing the topic of my suicide.

Suicide is a reality for everyone. For those at increased risk, whatever the reason may be, it will always be a danger, one which will not go away and must be acknowledged, confronted, and respected if it is going to remain suppressed.

If you are in need, if you are scared, reach out.

You are not alone.

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The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com