KT’s Story

I’ve been living with spasticity since age 27; I survived an intracerebral hemorrhagic stroke caused by a ruptured AVM which took the use of my left side.  The AVM resided between two cortices that make up the “strips” between the right frontal and parietal lobes.  These two cortices control movement and help the body respond to physical stimuli such as touch.  The majority of residual effects of the stroke are physical but I do have decreased cognitive abilities and heightened levels of anxiety. Living with spasticity and hemiparesis/hemiplegia is a daily challenge that is emotionally trying and mentally exhausting.

I had insurance because I was pregnant at the time and was able to receive treatment for the AVM, stroke, and therapy for my left body.  I spent a month in inpatient rehab and reveled in multiple gains.  I started walking again though I had to wear an AFO for foot drop, use a quad cane for short distances and a wheelchair for long.  The second month post stroke I spent following the daily exercises and stretches recommended by my inpatient therapists on the days I had no outpatient therapy.

The start of the third month post stroke began with brain surgery to remove the AVM.  I was five months pregnant by this time but I was confident the surgery would be successful.  I spent a lot of time with my surgeon and his team discussing options, procedures, and the fact the worst outcome (aside from the most obvious: death, miscarriage, and being brain dead) had already happened.  The surgery wouldn’t correct my left body but it would remove the threat of a secondary bleed and that was most important for us to survive the remainder of the pregnancy.

The surgery was a success but it also resulted in my first major setback.  When I went in, I had more control of my leg than my arm though I still couldn’t move my ankle or get full range of motion (ROM) from the hip down.  My arm was not flaccid— I had spasticity from the start, but they called it “extra tone” in those early days. I had no movement that I could control.  The only movement I had was when I yawned.  To this day, every time I yawn my fingers stretch out and my arm bends at the elbow, raising my forearm as if I have an answer I’m hesitant to provide.

It didn’t take long to discover during my second stint in inpatient rehab that I didn’t come out of surgery with the gains I made before going in.  My hip was tighter, resulting in less ROM of the leg and a tighter ankle.  My shoulder somehow had new wiggle room and I could grip with those fingers; I had no control of the elbow but I could straighten my arm with focus.  I started shaving my own armpits within a year but I wouldn’t gain much more than that lift of the arm that only lasts long enough for a few swipes of the razor.  My elbow is not strong enough to support my forearm in this position so I take a few punches to the top of the head as I move quickly to feel somewhat normal when not using my shower bench. In short, the surgery cost a bit of my leg but offered some arm in return.

I’m now 5 years into this “spastic” life. The hip pain never stops and I fear I will one day discover fingernail scars in my palm from the pressure of the spasms that sometimes grip…my grip.  I stretch my fingers throughout the day, I bend them back and hold them straight, and my hand usually lays in a near open position but when I experience any high emotion (laughter, anger, fear, anxiety) my left side locks up and I have difficulty moving forward even in conversation.  I am fortunate I don’t “look” like I survived a massive stroke if I’m sitting still and not speaking but those high emotions cause the left corner of my mouth to tighten and sometimes to droop noticeably, causing a heavy slur.

Spasms strain my joints.  There’s no rhyme or reason for these spasms.  They cause my limbs to tighten and straighten without warning.  I take baclofen to help reduce spasticity and I notice on days I forget my meds, the spasms increase in intensity and frequency. I exercise and stretch as often as possible to reduce spasms and the pain they cause. It’s difficult; each workout reminds me of my limitations, pain, and inability to be “normal.”  But I push forward because it’s all I have.

I’ve gone from a wheelchair to walking with a quad cane.  I moved up to a walking stick after committing to an exercise routine that focused on strengthening.  I wear an AFO which is bulky and annoying but after years of working to gain confidence in my balance, I am now walking with my AFO and husband’s arm as my only assistance out of the house.  I’ve had multiple setbacks from seizures injuring my back to depression putting my mind in a state of indefinite pause.  It’s difficult to come back from each setback; sometimes it takes more than 6 months to regain a desire to improve that is strong enough to overcome the feeling of hopelessness that meets me at every attempt to try.  I find that stretching hasn’t helped me gain anything but it’s prevented me from more losses.

I may never regain a fuller sense of independence; I may always be in pain but I feel pushing myself every day to do the things that stop me from feeling “abnormal” helps me regain a new form of independence that revolves around the things I have fought to be able to do rather than the things I am no longer able to do. Positivity isn’t easy but, luckily, perspective isn’t always about positivity.


Story from National Stroke Association