From childhood:
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Dyslexia (difficulty learning to read and reversals)
- Difficulties with attention and memory
- Poor coordination
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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
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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
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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
- 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
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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
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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
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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:
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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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