ADHD and Parkinson's

I have a husband with Parkinson’s and a 20 year old son with similar executive function issues but no symptoms of Parkinson’s. Both also have extremely poor sense of smell and problems with constipation.  I keep looking for some connection that would explain both of their issues

My husband was diagnosed in 2008 with Atypical Parkinson’s/Lewy Body Dementia (both started at about the same time but the physical issues are progressing faster than the mental).  There is a study in which 48% of people with LBD had symptoms of ADHD in their youth, compared to 15% of the control and 15% of the group with Alzheimer's.  This is an issue I am interested in as the transition from my husband’s lifelong cognitive pattern, which we understood as a variant of Attention Deficit Disorder, to Atypical Parkinson's was so gradual and so much just more of the same.  Now it is further complicated because my husband's diagnosis was changed in 2012 from Lewy Body Dementia to Multiple System Atrophy, a different form of Atypical Parkinson's.

Our son has similar ADHD with particularly significant executive function issues and shows so much the same pattern as my husband.  Dr. Kenneth Bergmann originally evaluated John at Medical University of South Carolina. He looked at John’s initial neuropsych report and said “that’s not normal, that’s not even normal Parkinson’s” to have a verbal IQ 37 points higher than performance IQ. He saw that as one of several clear signs that John was on the path to Lewy Body Dementia.  But a year later our son Paul had a learning disability evaluation before he started college, and his verbal IQ tested 26 points higher than his performance IQ.  We kept saying that to Dr. Bergman  (who has since moved away to Washington) and he kept saying that it was just that John must have had mild DLB symptoms going back many years. That’s the standard answer I get from researchers on DLB. But it doesn’t fit my experience--John has always been this way, it just got worse.

I have found two genetic illnesses that involve ADHD when young and Parkinson's when older--subclinical Fragile X and Gaucher's disease carriers.  Fragile X would not link father and son and my son has been tested and does not have a high number of repeats.  My husband has been tested and does not have the most common genetic defect leading to Gaucher's, but there is research showing its link to Parkinson's and LBD.

Squash soup

2 oz cashews
1 cup cooked winter squash or pumpkin
1 cup applesauce
2 cups turkey or chicken stock
1 tblsp curry powder
1/2 teasp nutmeg
pinch of cinnamon
splash of heavy cream

Chop cashews in the blender, then add all ingredients except cream and blend.  Pour into pan and heat to just boiling.  Stir in cream and serve.

Getting creative with Photoshop

I made these images from photographs using this tutorial plus instructions from Cafepress about how to create transparent backgrounds.

They are available on T shirts and whatever at: http://www.cafepress.com/sk/pm1

A year later

I think a year ago I probably was at my maximum weight.  I don't weigh myself, in fact I usually don't even look at my weight when I am weighed at the doctor's office.  But we waited nearly half an hour at the gym before we could swim last Thursday, and I took the opportunity to weigh myself.  A doctor might not be happy with my weight--184--but I am.  My guess is that I have lost 30 pounds in the last year.  Photos are from June 2011 and November 2012.

 























A year and a half ago I decided to try taking Metformin, hoping to improve my diabetes control a little more and hoping it might help me with my pattern of post-menopausal weight gain.  I kept increasing the dose, because I felt it wasn't doing anything.  I went up to 1000 mg twice a day, and thought maybe that was helping.  Then I got something like the flu, though my flu test was negative, and lost a clothing size in a week of being mostly too sick to eat.  After that we spent all of Christmas vacation cooking, but my clothing size didn't go back up.  It was in mid January that I started following the Primal way of eating.  I think I went down another clothing size in a month, and after that I have been very very slowly losing inches (as judged by how my clothes fit).  A few weeks ago I switched my pants down another size (luckily I kept a lot--I have one more size in the attic).

I went off the Metformin last summer when I learned that my A1c was 5.8--exactly what it was before I started the Metformin.  So I don't think I am eating particularly lower carb than I was; the difference is that I very rarely eat anything made with grains or refined sugar.  I eat large meals--I am not careful how much I eat--but I have given up snacking except for a bedtime snack.  I also started supplementing with iodine and over the course of the spring and summer I worked my way up to 25 mg., which I think has given me more energy.  Having more energy makes me happy! I'm doing pretty much the same exercise--swimming twice a week, some walking and gardening.

I'm very glad to have found what works for me.

Multiple System Atrophy causes of death

Cardiopulmonary arrest	7 (33.3)
Urinary tract infection	5 (23.8)
Aspiration pneumonia	2 (9.5)
Infectious pneumonia	2 (9.5)
Acute aspiration	1 (4.8)
Wasting syndrome	3 (14.3)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117630/

"Occurrence of sudden death is a common cause of mortality in MSA and may happen in the early stages while disability remains acceptable." http://tan.sagepub.com/content/3/4/249.full.pdf+html
Citation to: Shimohata, T., Ozawa, T., Nakayama, H., Tomita, M., Shinoda, H. and Nishizawa, M. (2008) Frequency of nocturnal sudden death in patients with multiple system atrophy. J Neurol 255: 1483-1485.
Abstract:

Sudden death has been reported in patients with multiple system atrophy (MSA), although the frequency of this event has not been well delineated. We investigated the frequency and potential causes of sudden death in patients with MSA. During the 5-year observation period, 10 of 45 patients with probable MSA died. The causes of death included sudden death of unknown etiology (seven patients), aspiration pneumonia (one patient), asphyxia after vomiting (one patient), and lung cancer (one patient). The mean survival time of patients with sudden death was 63.0 ± 24.7 months (range, 39–116 months). Among seven patients who experienced sudden death, six were found to have died during sleep. Among these patients, two had been treated with tracheostomy and three with continuous positive airway pressure (CPAP) or noninvasive positive pressure ventilation (NPPV) during sleep, suggesting that these treatments do not always prevent sudden death in patients with MSA. Nocturnal sudden death should be recognized as the most common mechanism of death in patients with MSA.
 

The close relationship between life-threatening breathing disorders and urine storage dysfunction in multiple system atrophy. K Deguchi, K Ikeda, R Goto, M Tsukaguchi, Y Urai… - Journal of Neurology, 2010 - Springer
Abstract:

Survival of multiple system atrophy (MSA) depends on whether a variety of sleep-related breathing problems as well as autonomic failure (AF) occur. Since the brainstem lesions that cause respiratory and autonomic dysfunction overlap with each other, these critical manifestations might get worse in parallel. If so, the detection of AF, which is comparatively easy, might be predictive of a latent life-threatening breathing disorder. In 15 patients with MSA, we performed autonomic function tests composed of postural challenges and administered a questionnaire on bladder condition, as well as polysomnography and laryngoscopy during wakefulness and under anesthesia. Polysomnographic variables such as the apnea-hypopnea index (AHI) and oxygen saturation (SpO₂) and the findings of laryngoscopy were compared with the degree of cardiac and urinary autonomic dysfunction. AHI, mean SpO₂ and the lowest SpO₂ showed significant correlations with urine storage dysfunction. In addition, patients with vocal cord abductor paralysis (VCAP) or central sleep apnea (CSA) contributing to nocturnal sudden death had more severe storage disorders than those without. On the other hand, no significant relationship between polysomnographic variables and orthostatic hypotension was observed except in the case of mean SpO₂. These results indicate that life-threatening breathing disorders have a close relationship with AF, and especially urine storage dysfunction. Therefore, longitudinal assessment of deterioration of the storage function might be useful for predicting the latent progress of VCAP and CSA.

Cognitive changes in Atypical Parkinson's

I just watched this presentation by an Australian neuropsychiatrist (about 45 minutes), and it is very helpful!

Part I: https://www.youtube.com/watch?v=b2o_lCDk0QQ&feature=relmfu

Part II: https://www.youtube.com/watch?v=FxWGipPsG4s&feature=relmfu

Part III: https://www.youtube.com/watch?v=n4XagPUf0V4&feature=relmfu

Part IV: https://www.youtube.com/watch?v=UGhfdGwGq_I&feature=relmfu

Part V: https://www.youtube.com/watch?v=TJUV9NxEhHo&feature=relmfu

She says adynamia (loss of drive and initiative) is the #1 issue.  For MSA she also talks about rigidity (loss of flexibility of thinking).   For all the atypical Parkinson’s she give a list of features:

• Reduced insight
• Mental inflexibility
• Can’t wait, narrow focus
• Reduced empathy
• Lack of appropriate concern (for example about the future progression of the disease)

That's such an accurate list of my frustrations.

Other useful lectures:
https://www.youtube.com/watch?v=qrbxb2pwPTo
https://www.youtube.com/watch?v=WPXThhpa9kM

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