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Johns Story - Appendix 1


John's Background | John's Diagnosis | John's Journey | Appendix 1


MY SYMPTOMS AT EARLY AUGUST 1995
  • Muscular rigidity in neck, shoulders, back - bilateral but predominantly right side.

  • Pain in neck shoulders and back - bilateral but worse on right side.

  • Tremor at rest in head and hands with "pill rolling" - bilateral but worse right side.

  • Right shoulder largely immobile - my arm did not swing when I walked and I was unable to use the arm properly even for simple tasks.

  • Right leg dragged when walking.

  • Right side of face "frozen" - it did not respond when I smiled or changed expression; I tended to speak from the left side of my mouth.

  • Incoherent and/or stammering speech at a low level. However I could sing quite coherently.

  • Ataxia.

  • Great fatigue which fluctuated to a small degree with blood sugar levels.

  • I felt as if I was constantly trying to walk against the current in chest high water.

  • Weakness in most muscles.

  • Intermittent and fluctuating tachycardia/bradycardia/arrhythmia.

  • Great difficulty in turning over in bed. I had to roll out of bed in the morning, then pull myself upright using the bed or chair.

  • Simple tasks such as dressing became very slow, uncoordinated and confusing.

  • Drowsiness.

  • My writing had become smaller and less legible, often degenerating to an almost illegible scrawl running off the line.

  • Festinating walk with a widened gait.

  • Difficulty in initiating actions, e.g. rising from a chair, starting to walk, opening a cupboard.

  • Elevated large toes.

  • Clawed small toes.

  • Poor coordination - e.g. couldn’t catch.

  • Inability to carry out two simple tasks at once - e.g. walk and open bottle.

  • "Freezing" - I used tricks to turn corners, walk through doorways, etc.

  • Clumsiness and tendency to drop things.

  • Dizzy spells, disorientation and "absences".

  • My judgement of speed and distance was poor so I had difficulty crossing roads.

  • Driving was risky but the only feasible means of transport.

  • Twitching and spasms when relaxed - e.g. in bed.

  • Intermittent back spasm.

  •  Reduced visual acuity - I had great difficulty reading newspapers for instance.

  • Dyspnea, especially when speaking or at rest.

  • Appetite fluctuations without apparent cause.

  • Dysphagia - especially with cold drinks.

  • Gastric reflux.

  • Loss of libido and/or impotence.

  • Enuresis.

  • Lowered core temperature - I felt the cold much more than I used to.

  • Tinnitus.

 

 

 

 

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