How I understand my spasticity

• It is a reflex, not a choice. Knowing this reduced the shame and frustration.
• It has triggers. Cold, pain, stress, a full bladder, rushing, and fatigue all make my tone worse.
• It varies through the day. Mornings are tighter for me, afternoons better, evenings mixed. I plan around that pattern.

I started a simple diary for two weeks, noting time, activity, mood, pain, and tone. Patterns jumped out. That diary shaped my routine.

My daily rhythm that keeps impact lower

Morning reset, 10 to 20 minutes

• Warmth first: heat pack on tight muscles for 10 minutes, never too hot, then gentle moves.
• Slow breathing: four counts in, six counts out, for two minutes. Lower stress equals lower tone.
• Long, easy holds: I hold each comfortable stretch 30 to 60 seconds, no bouncing. I think of lengthening, not forcing.

Little and often movement

Instead of one big session, I do small bouts through the day:

• Before meals, after sitting, and before tasks that usually trigger tone.
• I pair movements with everyday life, such as calf stretch while the kettle boils, wrist and finger opening before typing, shoulder external rotation during TV adverts.

Evenings are for calming down

• Warm shower or bath if energy allows.
• Gentle range of movement while warm.
• Comfortable position to sleep so my body does not curl in on itself overnight.

Positions that help me, and ones I avoid

• Support the thumb and wrist open. A soft resting splint or rolled flannel inside the hand stops the thumb tucking in.
• Hips, knees, and ankles lined up. When I sit, feet flat, knees hip-width, a small towel at my lower back.
• Side-lying for breaks. A pillow between my knees and one to cuddle keeps my arm from pulling tight.
• Avoid long static positions. Even good posture becomes a trigger if I do not move for ages. I set timers to stand, shift weight, and reset my shoulders.

Stretching that actually works for me

• Go slow into the tightness. I wait for the first easing, then hold a little longer.
• Prolonged load beats force. Elastic loops, gentle weights, or leaning into a doorway give the muscle time to relax.
• Pair stretch with purpose. After opening my hand, I reach to touch different objects. After a calf stretch, I practise step-throughs.

If something hurts sharply, I stop. A dull, stretching sensation is fine. Sharp pain makes my tone jump.

Everyday task hacks

• Hands together technique: I guide my affected hand using my other hand to place, open, and stabilise.
• Slow starts: I pause before a movement, breathe out, then move. Rushing is a trigger.
• Use the environment: Lean the forearm on a table to reach, slide objects instead of lifting them, use trays to carry items.
• Clothing choices: Stretch fabrics, front fastenings, touch-fastening shoes, and elastic waistbands remove friction and reduce tone spikes.
• Kitchen help: Rocker knives, non-slip mats, electric can openers, and pan holders mean fewer sudden, tight reactions.

Managing triggers

• Cold: I use layers, warm gloves, and heat packs outdoors in cold weather.
• Stress: Short breathing breaks, grounding exercises, and realistic plans for the day. One big job or two small ones.
• Pain: If something always hurts and drives tone up, I tell my team. Adjusting posture or equipment often helps.
• Full bladder or constipation: Basic, but fixing them has a huge effect on tone. Hydration, routine, and fibre matter.
• Fatigue: I plan recovery time after busy periods. Spasticity loves a tired nervous system.

Tools that might help you

• Splints and orthoses: Resting hand splint for comfort, functional brace for tasks, and an ankle-foot orthosis if my foot turns in. Fit and comfort are everything, so I feed back to my clinician.
• FES and vibration: Functional electrical stimulation or local vibration can wake up weaker muscles and settle tone.
• Adaptive handles and grips: Built-up pens, angled utensils, and jar openers mean less fight from my hand.
• Self-massage tools: A soft ball against the wall or foam roller for calves and thighs before stretching.

Medicines and injections, as part of a plan

I see medication as a support, not the whole answer.

• Oral medicines can take the edge off but may cause sleepiness or weakness.
• Botox (a.k.a. Botulinum toxin injections ) targeted to problem muscles, paired with therapy and stretching, gave me windows of easier movement. I plan practise during those weeks to lock in gains.

I always discuss side effects and goals with my clinician and I keep notes on changes.

Night-time strategies

• Bed set-up: Pillow for the arm, another between knees, duvet tucked to stop my foot pointing down.
• Gentle stretch routine before lights out.
• If tone wakes me, I reset with breathing and a brief stretch rather than powering through the tightness.

Better sleep equals quieter tone the next day.

Working with my team

• I bring data, not just feelings. My short diary helps my therapist adjust the plan.
• Shared language: We agree names for movements and positions, so coaching is clear.
• Family and friends: I show them how to support without rushing me. We practise the calm pause before moving.

If you are supporting someone, your patient voice and steady hands are part of the therapy.

Mindset that keeps me going

• Progress is uneven. If today is tight, I choose the smallest helpful action and call that a win.
• Comparison is a trap. I compare only to last month me, not anyone else.
• Celebrate function, not only range. Opening my hand enough to hold a cup matters more than hitting a perfect angle.

Red flags I watch for

• Sudden increase in pain or tone, new redness or swelling, dramatic change in position I cannot correct, or fever.
• If these show up, I contact my clinician. Early help prevents setbacks.

A simple starter plan

1. Keep a two-week trigger diary.
2. Set three daily anchor moments, morning, midday, evening, for warmth, breathing, and gentle movement.
3. Choose two positions that calm your tone and use them for rest.
4. Pick one strength exercise that opposes your tight pattern and practise it every other day.
5. Review with your therapist in two to four weeks, with notes on what changed.

Final thoughts

Spasticity is tough, but it is not in charge. With warmth, slow breaths, smart positions, little-and-often movement, the right tools, and a team that listens, I found a steadier body and a calmer mind. You can build your version of that routine. Share this with your family and friends, ask them to help you slow things down, and let small daily wins add up to real freedom.