Wednesday, October 03, 2012

John's medical history

I compiled this when someone asked and I am putting it here so I won't lose it.

From childhood:
  • Dyslexia (difficulty learning to read and reversals)
  • Difficulties with attention and memory
  • Poor coordination
Early adulthood:
  • Difficulty with learning languages
  • Difficulty with memory and organization
  • Tendency to be late, poor sense of how long things will take
  • A neurological event that was never explained—pain in his chest and a band of numbness around his abdomen that lasted a few weeks
  • Ongoing problems with insomnia
  • Poor sense of smell
  • Probably already had a 20 point gap between verbal and performance IQ—our son does
40s and 50s
  • Diagnosed borderline Attention Deficit Disorder
  • Managed well following a routine but didn’t deal well with change
  • Snoring or sometimes a soft sound breathing in only, when sleeping on his back
  • Problems with constipation
  • Took antacids after every meal (this has continued, even when he went on acid blockers)
  • Swallowing issues diagnosed as Schotsky’s ring and successfully treated
The two or three years before diagnosis at age 62
  • Increasing slowness—set his alarm earlier and earlier to get to work on time
  • Yelling and hitting out in his sleep (once he bit my hand)
  • Began to make mistakes when buying airline tickets
  • Tested as having a little sleep apnea, not enough to need treatment
Age 62—diagnosed by a neurologist with Parkinsonism and then by the Movement Disorder Specialist with Lewy Body Dementia (he didn’t have all the symptoms yet but that doctor thought he was on that path)
  • Cogwheel rigidity, worse on his nondominant side
  • Only swung one arm when walking
  • Could not spell the word WORLD backwards when we met with the MDS
  • He noticed he was making mistakes at work and was able to get disability retirement and Social Security Disability
First few years after diagnosis
  • Head tilted forward
  • Neuropsych testing showed a 30 point gap between verbal and performance IQ
  • Occasional confusion
  • I took over almost all bill paying and household organization—luckily he was always somewhat passive and didn’t get upset about losing control
  • Test for sleep apnea a year after the first test showed less
  • Blood pressure on the low side when tested in the doctor’s office
  • No more heavy sweating
  • Swelling of his lower legs, eventually treated with Velcro-closed elastic wraps
  • Alternating diarrhea and constipation
  • Surgery for benign prostate enlargement resulted in little improvement
  • Passed driving evaluation by a specialist OT at the rehab hospital each year
Last couple of years (age 65-67)
  • Takes him several hours to get ready and shower
  • Serious swelling of his lower legs, finally treated as lymphedema with velcro-closed wraps (which someone has to put on for him)
  • Occasional bowel and bladder incontinence
  • Rapid shallow breathing, but he says he feels no shortness of breath
  • Still able to make his own breakfast and lunch and talk politics with friends
  • Increasingly noticeable that he misreads or misunderstands things
  • More focused on himself, tends to say no to doing things even with our kids
  • Walks with very small steps most of the time
  • Diagnosis changed to MSA because he hasn’t had a steep cognitive decline (or hallucinations) as would be typical with Lewy Body Dementia
His current medications:
  • Sinemet (Carbidopa 25 mg/Levidopa 100 mg) 2 tablets 4 times a day
  • Aricept (Donepezil)10 mg once a day
  • Wellbutrin (Bupropion) 300 mg. once a day.
  • Proscar (Finasteride) 5 mg. one once a day for benign prostate enlargement
  • Flomax (Tamsulosin) .4 mg. once a day for benign prostate enlargement.
  • Clonazepam .5 mg at bedtime for sleep and REM sleep disorder
  • Mirtazapine ½ of mg. before bed for sleep (he used to take Clonidine but was taken off it because it lowers blood pressure
  • Omeprazole 40 mg once a day for acid reflux
  • Amitiza (Lubiprostone) 24 mcg once daily for constipation
  • Famciclovir 500 mg once a day for herpes prevention

Supplements and OTC:
  • MCT oil 1 tbsp a day and Coconut oil 1 ½ teasp a day
  • Vitamin D 2000 IU once a day (plus 2000 in vitamin for a total of 4000)
  • Life Extension 2 per day multivitamin
  • Jarro-Dophilus EPS probiotic one a day and Ultra-Zime digestive enzyme supplement 2/day
  • D-Mannose, 500 mg once a day (to prevent UTIs)
  • 3 mg melatonin one a day
  • Tums (Calcium carbonate) 500 mg. antacid about 12 a day as needed
  • Miralax 1/2 dose once a day
  • Metamucil one tblsp a day

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