“In about a year, MSA will kill Tommy Fitzgerald”

This article from a York, PA newspaper is about someone diagnosed with multiple system atrophy in 2010.  Here’s an excerpt:

Six years ago, Tommy Fitzgerald sat in his doctor’s office and learned he had an expiration date.  Seven years.  That was it, the doctor told him. In seven years, he would be dead.  He was more pissed off than anything, he recalled. It kind of wrapped around him, the diagnosis. He just wanted to hide from everything.

Read the full article here:


In about a year, MSA will kill Tommy Fitzgerald
by Mike Argento
Published May 10, 2016, 9:22 a.m. ET
York Daily Record


Updated in July 2017:  Tommy died in May 2017 with presumed MSA.


Largest study of orthostatic hypotension in MSA

This is a report of the largest study done of orthostatic hypotension in multiple system atrophy (MSA).  OH is described as a fall in blood pressure when changing positions — from lying down to sitting up, and from sitting up to standing.

The European MSA Study Group found that:

* 54% patients had moderate or severe OH within 3 minutes of standing

* while 72% had moderate or severe OH within 10 minutes of standing

So, it’s far better to give research participants a 10 minute orthostatic challenge to determine whether or not they have OH.

Also, researchers found that:

* OH magnitude was significantly associated with disease severity, orthostatic symptoms, and supine hypertension.

* OH severity was not associated with MSA subtype.

The abstract is copied below.



J Neurol Neurosurg Psychiatry. 2016 May;87(5):554-61. Epub 2015 May 14.

New insights into orthostatic hypotension in multiple system atrophy: a European multicentre cohort study.

Pavy-Le Traon, Piedvache, Perez-Lloret, Calandra-Buonaura, Cochen-De Cock, Colosimo, Cortelli, Debs, Duerr, Fanciulli, Foubert-Samier, Gerdelat, Gurevich, Krismer, Poewe, Tison, Tranchant, Wenning, Rascol, Meissner; European MSA Study Group.

Orthostatic hypotension (OH) is a key feature of multiple system atrophy (MSA), a fatal progressive neurodegenerative disorder associated with autonomic failure, parkinsonism and ataxia. This study aims (1) to determine the clinical spectrum of OH in a large European cohort of patients with MSA and (2) to investigate whether a prolonged postural challenge increases the sensitivity to detect OH in MSA.

Assessment of OH during a 10 min orthostatic test in 349 patients with MSA from seven centres of the European MSA-Study Group (age: 63.6 ± 8.8 years; disease duration: 4.2 ± 2.6 years). Assessment of a possible relationship between OH and MSA subtype (P with predominant parkinsonism or C with predominant cerebellar ataxia), Unified MSA Rating Scale (UMSARS) scores and drug intake.

187 patients (54%) had moderate (> 20 mm Hg (systolic blood pressure (SBP)) and/or > 10 mm Hg (diastolic blood pressure (DBP)) or severe OH (> 30 mm Hg (SBP) and/or > 15 mm Hg (DBP)) within 3 min and 250 patients (72%) within 10 min. OH magnitude was significantly associated with disease severity (UMSARS I, II and IV), orthostatic symptoms (UMSARS I) and supine hypertension. OH severity was not associated with MSA subtype. Drug intake did not differ according to OH magnitude except for antihypertensive drugs being less frequently, and antihypotensive drugs more frequently, prescribed in severe OH.

This is the largest study of OH in patients with MSA. Our data suggest that the sensitivity to pick up OH increases substantially by a prolonged 10 min orthostatic challenge. These results will help to improve OH management and the design of future clinical trials.

PubMed ID#: 25977316   (see pubmed.gov for the abstract)

Published by the BMJ Publishing Group Limited.

Advice for dementia caregivers

Though this New York Times article is title “Advice for Alzheimer’s Caregivers,” the article applies to caregiving for anyone with dementia, not just Alzheimer’s Disease (AD).

A key excerpt from the article on caregiving:

“Research conducted at NYU Langone found that the emotional and practical support received from family and friends led to significantly fewer symptoms of depression and stress and better physical health of the caregivers. The study also found that those caregivers were able to keep their relatives with dementia at home for a year and a half longer than those who did not receive support.”

Please attend our caregiver-only support group meetings, find other support group meetings (for Alzheimer’s or Parkinson’s caregivers), or find an online support group! Let me know if you need any leads.

This article is part of a group of articles in this week’s NYT about Alzheimer’s. One very long article, “Fraying at the Edges,” is about Geri Taylor, who has AD, and her husband Jim. It’s a fascinating look at someone coping with an AD diagnosis and trying to live life to the fullest. There’s a link to that article from the online version of the caregiver article.


Advice for Alzheimer’s Caregivers
By Amy Zerba
New York Times
May 2, 2016


Former Utah Jazz Coach Diagnosed with LBD

Local LBD support group member Scott pointed out this recent article to me. It’s an article from the Salt Lake Tribune about former Utah Jazz basketball coach Jerry Sloan being diagnosed with Lewy Body Dementia. As Scott said, it’s a courageous person to state publicly he/she has LBD.

I’ve listed a link to the full article below along with a companion article about diagnosing LBD.

Utah Jazz: Jerry Sloan suffering from Parkinson’s disease, and a form of dementia
By Steve Luhm
The Salt Lake Tribune    
First Published Apr 06 2016 03:30PM
Last Updated Apr 09 2016 05:39 pm

See http://www.sltrib.com/home/3743576-155/utah-jazz-jerry-sloan-suffering-parkinsons?fullpage=1  

The companion article states that “Lewy body dementia, Alzheimer’s and Parkinson’s diseases appear to be linked, based on similar evidence seen in the brains of patients, according to the Alzheimer’s Association.” There is NOT similar evidence seen in the brains of those with LBD and AD. Often they co-occur but unless they occur, the brains are very different. I think the reporter misread what the Alzheimer’s Association’s website said about LBD.

Utah doctor: Diagnosing Parkinson’s, Lewy body dementia has improved, but cure remains out of reach
By Benjamin Wood
The Salt Lake Tribune 
First Published Apr 06 2016 08:24PM   
Last Updated Apr 09 2016 05:39 pm

See www.sltrib.com/home/3748688-155/utah-doctor-diagnosing-parkinsons-lewy-body


Non-medication approaches to orthostatic hypotension from NYU

Something like 80% of those with MSA suffer from orthostatic hypotension (OH) and about 50% of those with LBD do. Someone recently posted to one of the MSA-related Yahoo!Groups this New York University publication (written by autonomic expert Horacio Kaufmann, MD) on treating OH. The article below is copied from the Yahoo group.

Be sure not to miss the physical counter-maneuvers — making a fist, crossing your legs, clenching your buttocks — in #9!



Treating symptomatic orthostatic hypotension (OH)
by Horacio Kaufmann, MD
Director, NYU Dysautonomia Center (dysautonomiacenter.com)
(not dated)

Symptoms of OH include dizziness/lightheadedness, feeling about to faint, fatigue/tiredness, shortness of breath, changes in vision, pain in neck and shoulders or chest pain.

Symptoms of OH can be improved with time, patience and non-pharmacologic changes. It is tempting to try to control OH only with medications. However, these are not effective enough and may have adverse effects. However, treatment of OH is more successful if non-pharmacologic measurements are implemented.

Following is a series of steps to improve symptoms of OH. All steps may be implemented at the same time. If performed properly, these can lead to a dramatic improvement, even with no medications.

1. Liberalize water intake. Patients with OH need more water than healthy people. Patients with OH should be drinking 1 gallon/day (~3 liters). Ideally, it is best to drink just water. Tea and coffee might be acceptable, but they may increase urine output so, at the end, they may worsen your symptoms. Diet beverages are also acceptable. Gatorade, juices, and non-diet beverages are not recommended due to their high-sugar content. Diet (sugar free) Gatorade is fine.

2. Liberalize salt intake. Add as much salt to your meals as you can handle. Most of patients do not need to take salt tablets. In fact, salt tablets may cause abdominal discomfort. Just enjoy regular salt with your meals.

3. Wear compression stockings. Compression stockings will reduce the venous pooling that occurs when standing up and, therefore, will improve your blood pressure standing. To be useful, compression stockings should be worn up to the waist. Those up to the knee are not effective. You do not need to wear the stockings during sleep.

4. Wear an abdominal binder. The mechanism is similar to that of compression stockings. You do not need to wear it during sleep.

5. Sleep with the head of the bed raised at least 30 degrees (ideally 45-50 degrees). This is useful because patients with orthostatic hypotension frequently have supine hypertension (i.e., high blood pressure when lying down). Therefore, to avoid supine hypertension, patients should never lie flat. Sleeping with the head of your bed raised will also reduce urine output, making you wake up fewer times to urinate, and will improve your blood pressure in the morning. The best way to raise the head of the bed is to get an electric mattress. These are affordable, commercially available, and in several sizes. Other, less efficacious ways to increase the head of the bed is by using a wedge, or just by putting some books/bricks under the upper feet of the bed.

6. Drink 500 ml of cold water 30 minutes before getting out of bed in the morning. This will increase your blood pressure when you get up. Drinking 500 ml of water in any other moment of the day will also increase your blood pressure. You may use this on an as needed basis (but make sure you drink, in total, around 1 gallon/day of liquids).

7. Start a physical therapy regimen. In patients with OH, physical exercise will decrease blood pressure. But exercise is crucial to keep muscles active. Therefore, in order to avoid low blood pressure when exercising, patients should perform recumbent exercises (e.g., recumbent bicycle, elastic bands, rowing machine, etc.) The best exercise is, by far, the one performed in a swimming pool. This is because the hydrostatic pressure of the water will prevent the fall in blood pressure. Therefore your blood pressure will not fall so dramatically if you are inside the water (with the head out, of course, so that you can breathe) even in spite of the fact that you are standing. While you are inside the water you will feel much better and you will be able to exercise with no significant symptoms. The better your physical shape is, the less intense your symptoms of OH will be.

8. The following factors worsen OH (i.e., decrease blood pressure) and should be avoided (or can be used right before going to bed to lessen supine hypertension during nighttime):

a. Hot and humid temperatures
b. Physical exercise (see point #6)
c. Dehydration (see point #1)
d. Alcohol
e. High glycemic index carbohydrates. Try to reduce high-glycemic carbohydrates in your meals. Also try to have several, small meals (5-6) instead of three traditional meals.

These are high-glycemic carbohydrates that you should reduce/avoid:

Potatoes, Yams, Candy, Bagels, White bread, White pasta, Pizza, Corn, Rice, Rice cakes, Oatmeal, Wheat, Grits, Cereals (corn flakes, etc), Soft drinks, Bottled fruit juices (orange, apple, etc), Cakes, Cookies, Ice cream, Chocolate, Full fat milk, Watermelon, Bananas, Grapes, Rye, Yogurt

Try to increase low-glycemic index carbohydrates in your diet, including:

Whole wheat bread, Whole wheat pasta, Brown rice, Pearl barley, Skim milk, Reduced-fat yogurt, Apples, Grapefruits, Pears, Peaches, Just-squeezed fruit juices, Prunes, Beans, Black-eyed peas, Chickpeas, Peas, Hummus, Lentils, Soybeans, Cashews, Peanuts, Carrots, Diet soda, Almonds, Nuts, Quinoa

9. Be aware of your symptoms. If you experience symptoms of orthostatic hypotension, you will find relief by performing physical counter-maneuvers (making a fist, crossing your legs, clenching your buttocks), useful to increase standing blood pressure. If these counter-maneuvers are not enough, sit or lie down quickly to avoid passing out.

10. Finally, follow the recommendations regarding medication changes that we may recommend.