Famous Birthdays, September 7

Yesterday was my birthday, and today, I learned that it had been Muffie's birthday as well.  Happy birthday!!

It is always cool to discover that you share a birthday with someone.  The following famous and significant figures also share our day.  Seems like September 7 was a good day for monarchs, politicians, artists, composers, singers, and cartoon character voices.

Of course, it's really neat to share a birthday with Queen Elizabeth I, Grandma Moses, Garrison Keillor, and Buddy Holly.  But I was most excited to learn that I share the day with the famous Heinrich Stölzel, horn player and one of the inventors of brass instrument valves!  How cool is that?!!

Monarchy, Military, Politicians:

Queen Elizabeth I of England

 ‧ Emperor Saga, 52nd Emperor of Japan (786-842) ‧ Louis II (1438-1471, Landgrave of Hesse) ‧ Frederik I (1471, King of Denmark/Norway (1523-33)) ‧ Thomas Erastus (1524-1583, Swiss theologian) ‧ Queen Elizabeth I (1533-1603, Greenwich, Queen of England (1558-1603), daughter of Henry VIII and Anna Boleyn (d. 1603)) ‧ Ernest Augustus (1674-1728) ‧ Mary Anne of Austria (1683-1754, Archduchess of Austria and Queen consort of Portugal) ‧ Bernardus JC Dibbets (1782, Dutch baron/general-major (Maastricht) ‧ William Hamsley Emory (1811-1887, Major General (Union volunteers)) ‧ Howell Cobb II (1815-1868, Major General/Secy of Treas (Union)) ‧ Louise of Hesse-Kassel (or Hesse-Cassel) (1817-1898, Queen of Denmark) ‧ Thomas Talbot (1818-1886, 31st Governor of Massachusetts) ‧ Henry Campbell-Bannerman (1836, British PM (L) (1905-08)) ‧ Willem H Nolens (1860, priest/Dutch ambassador to Vatican) ‧ Baudouin I (1930, King of Belgium (1951-93) ‧ Omar Karami (1934, Prime Minister of Lebanon) ‧ Abdou Diouf (1935, President of Senegal (1981- )) ‧ Beverley McLachlin (1943, Chief Justice of Canada) ‧


Artists, Entertainers, Cartoon Voices:

Grandma Moses, painter

‧ Grandma Moses [Anna Maria] (1860-1961, NY, primitive painter (Old Oaken Bucket)) ‧ Don Messick (1927, Buffalo NY, cartoon voice (Bam-bam, Astro-Jetsons, Scooby-Doo)) ‧ Garrison Keillor (1942, humorist (Praire Home Companion)) ‧ Julie Kavner (1951, LA California, actress (Brenda-Rhoda, Marge-Simpsons)) ‧

Composers:
‧ Clemens Thieme (1631) ‧ Pal Esterhazy (1635) ‧ Jean Monnet (1703) ‧ Francois-Andre Danican Philidor (1726, France, also chess champion) ‧ Damasus Brosmann (1731), Elisabetta de Gambarini (1731) ‧ Joseph Legros (1739) ‧ Frantisek Max Knize (1784),  Giovanni Tebaldini (1864) ‧ Attilio Brugnoli (1880) ‧ Kurt von Wolfurt (1880) ‧ Filip Gershkovich (1906) ‧ Ahmet Adnan Saygun (1907) ‧ Hugo Pfister (1914) ‧ Graeme Bell (1914, Australian pianist and composer) ‧ Kirill Vladimirovich Molchanov (1922) ‧ Hugh Aitken (1924) ‧ Graham Dudley Whettam (1927) ‧ Charles Camilleri (1931) ‧ Romualds Kalsons (1936) ‧ Olly Wilson (1937) ‧ Mark Isham (1951) ‧ Michael Byron (1953) ‧

Musicians, Singers, Song-writers:

Horn with Stölzel Valves

‧ Heinrich Stölzel (1777-1844, German musician, horn player, early valve designer, composer, and "inventor of the modern valve trumpet") ‧ Lena Valaitis (1943, Lithuanian-German Schlager singer) ‧ Max Kaminsky (1908, trumpeter) ‧ Jo Juda (1909, Dutch musician) ‧ Natalia Dmitrevna Shpiller (1909, singer) ‧ Al Caiola (1920, American guitarist) ‧ Arthur Ferrante (1922, pianist/composer (Ferrante & Tachere-Exodus)) ‧ Bridie Gallagher (1924-2012, Donegal, Ireland, singer (A Mother's Love's A Blessing, The Boys from County Armagh)) ‧ Sonny Rollins (1930, NYC, jazz saxophonist (Blue Room)) ‧ Little Milton (1934-2005, American musician) ‧ Buddy Holly (1936-1959, Lubbock TX, singer (Peggy Sue, That'll Be the Day)) ‧ Luis Aravena Munoz (1945, Chilean singer/exiled in Netherlands) ‧ Alfa Anderson (1946, Bronx NY, rock vocalist (Chicago)) ‧ Gloria Gaynor (1949, Newark NJ, disco singer (I Will Survive)) ‧ Chrissie Hynde (1951, Akron OH, rocker (Pretenders-Mystery Achievement)) ‧ Morris Albert (1951, Brazilian singer) ‧ Ben Bossi (1953, rocker (Romeo Void)) ‧ Benmont Tench (1954, Gainesville FL, rock keyboardist (Heartbreakers)) ‧ Michael J Feinstein (1956, pianist (Isn't It Romantic)) ‧ Diane Warren (1956, American song writer) ‧ Margot Chapman (1957, Hawaii, vocals (Starland Vocal Band-Afternoon Delight)) ‧ Nadieh (1958, Dutch singer/guitarist/composer (Haifa Blue)) ‧ Jermaine Stewart (1959, rocker) ‧ David Steele (1960, Birmingham AL, rock keyboardist (Fine Young Cannibals)) ‧ LeRoi Moore (1961-2008, American Saxophonist (Dave Matthews Band)) ‧ Jean-Yves Thibaudet (1961, French Pianist) ‧ Eric Eazy-E Wright (1963, rapper) ‧ Christopher Acland (1966, musician) ‧ Kyle Stevens (1968, NJ, rock guitarist (Bang Tango-Dancin' on Coals)) ‧ Little Jimmy Urine (1969, American singer (Mindless Self Indulgence)) ‧ Paul McCoy (1981, American musician (lead singer of 12 Stones)) ‧ Spectacular Blue Smith (1986, American musician (Pretty Ricky)) ‧

Carnival of MS Bloggers #122

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Sleep Disorders, MS, and Multipurpose Sticks

A tale of two stickies 

from Thomas of BiPolar, MS and still as handsome as ever 

Take a look at this picture:

On the left you see a very dilapidated golf club, a one iron of some
ancient make probably used by the Morris clan (golf joke) and left in a garage sale.  The paint wasn't on there originally.  Just an added touch to being stuck in a garage by a guy who found that he could not play golf, but could hit a ball with a stick and follow it around.  I just didn't feel the need to pay some stranger for the use of their land to hit the little ball and follow it around privileges.

The club has a MS use though.  A few times a week I grab the club, stand in the grass, assume the position, and take a good swing.  If I remain standing, its a good day.  If I come down goofy or start to tumble, this is not a good day and I should be careful.  So while my one iron and its friends in the bag sitting in my garage may never see a golf course again, they do remind me of another day when I could freely play a sport I sucked at.

Now as for the stick in the middle of the photo, that's my new walking stick.  On Friday, Jackie and I went to the Southern Vermont Craft Fair in Manchester, Vermont.  This has been a tradition for many years and we'd stay at local B & B's and go to the Craft Fair at the rolling lawns of Hildene, the former home of Robert Todd Lincoln and his family.  Highly recommended. Well, the bed and breakfasts closed.  And this year the Craft Fair moved to the other side of Manchester.  Ch-ch-ch-ch-changes, said Mr. Bowie.

Time to turn and face the strain.  The Craft Fair is in the midst of a field, a Vermont field, meaning rocks and little gullies and tiny holes, and if you have any problem with coordination, and I believe lots of MSers do, here was a challenge.  If I held my wife's hand I could move pretty well, going from booth to booth, but the moment she stopped to look at jewelry or whatever and I continued on my own, any quick turn or "excuse me" step out of the way might send me reeling into any booth anywhere, and I'd find myself staring at a piece of crockery that would only set me back three hundred bucks.  I'd mumble some excuse like - "Astounding work. I must remind the Queen." - and move along, find Jackie and head out.

We got a drink and hit the food tent where free samples were distributed.  My favorite was the rye whiskey (butterscotch in a paper shot cup).  When we left the food tent, we headed out to the tents off to themselves on the other side of the field.  There was the temporary abode of Debi Hitter, purveyor of custom made walking sticks (Eagle Scout sticks a specialty).  I ended up with one of the those sticks, and used it successfully to move around the craft with slightly more balance.  The stick also opens up new possibilities for career options:

1. Religious leader  (i.e. Moses) - see the staff in his right hand - by the way, the statue is in Washington Park in Albany NY, and this shot was taken during the Tulip Festival held each May.  Let's see, I might  ask my former employer to "let my people go", but they would, and then try and run the Department of Social Services with trained monkeys  (a lot easier to pass out bananas than support).  And where would I lead my people anyway? Across the street for lunch? The parking lot?

2. Robin Hood - there's that scene in every Robin Hood movie and parody from Mel Brooks to Daffy Duck where Robin and Little John parry with quarterstaffs, like this. See maybe I could become the local Jedi Knight for the Luther Forest area.  There must be an opening somewhere.  I know my first enemy, the chipmunks in the back yard. 


I figure a swing or two with my new Jedi stick (I can make the noises) and those little buggers will head off into the Endor forests.

3. Join one of those German groups with the leiderhosen, and the sticks with the jingle bells on them, but I'd probably be asleep in my chair by the second song, so never mind.

I'll try to come up with other stick uses (open for suggestions).  Right now I'll use it on tough walking days.  It's better than a wheelchair.  It's a reminder that tough days may be ahead, but I can handle them in style.  The lady who made the stick is also interested in providing others to the MS group.

From the update pile: I've got appointments with both my new psychiatrist and neuro this month, and just need to step away from my old psych (who I noticed in the newspaper today didn't pay his taxes and got slapped by the Feds), and do my paperwork to transfer stuff. Best of luck to my old neuro as she moves to New Jersey.  I found that out through a meeting of the minds of the two people who showed up at the support group Thursday.  I could not have met a more gracious lady, and I hope the group works out.

How to Sleep with MS 

from The Girl With MS

Why can't we sleep? There is no real reason other than MS as to why I have sleep issues, but it's amazing how I can mess myself up!

Here I am in the beautiful Eastern Sierras listening to Bishop Creek as it riffles by below the cabin. My current view:
  


On vacation but with a few minor projects and tasks to tend. But not enough to keep me awake all morning. The first night I was exhausted and fell asleep at 9pm when my head hit the pillow, awaking at 4am, which did constitute seven hours of sleep. But I didn't want to be awake at 4am.

So last night I aimed to stay up later thinking I could get seven hours and wake at a reasonable time. Now as the day progressed, after some time in the warm Bishop sun, some fly fishing and some creative cooking, I thought to myself, you are at 8,500' altitude, "Go fill up your water glass". Yes, I thought this often, every time I opened another beer.

I even thought of the magnesium supplement, magneleveux, in my bag, as I opened another beer.

Daydreaming, sketching, visualizing, I had a fun night, as I opened another beer.

Exactly what NOT to do with MS!

Sure, I stayed up until midnight, then woke up at 4:38am. Bing! And I'm awake. The need to pee and the incessant leg spasticity kept me squirming all morning long. The 42 degrees winding through the window bringing with it the sound of the creek was my saving grace. Ugh. I know better. I did take 1/2 a klonopin and a melatonin before going to bed. And another half of klonopin in am when couldn't fall back to sleep.

Three glasses of water later, a banana, magnalevure and some Shen Trition, and this Girl with MS is finally feeling a little better.

What I could have done:

• Enjoyed the great healthy dinner we had (micro greens, salmon, veggies)
• Dry brushed my legs
• Took a not to hot bath
• Read a book
• Wrote in blog

Etc....

Yes, these are all better choices then the one I made. So, live and learn. Let go and let God as they say.

This all inspired me to do some researching on sleep and MS. Here is some of what I found:

This is a great summary from WebMD of what can cause folks with MS to have restless sleep: Multiple Sclerosis and Sleep

Life aspects that can effect sleep patterns in those with MS:

• Stress
• Anxiety
• Eating
• Drinking
• Nutritional health
• Age
• Physical activity
• Mental activity
• Spasticity
• Depression

So, how do we deal with this sleep issue?

Time to change our habits!

Food suggestions:

Small bananas are good: (they still contain sugar so small is better before sleep)

"Combining the amino acid tryptophane with carbohydrates as well as calcium and  magnesium can help your brain relax and your body nod off to sleep."

And the magic of oatmeal can make the difference of a more restful sleep pattern:

"Calcium has been proven to help the brain use and process tryptophan, while  magensium, a natural sedative, acts as an "assistant" to calcium helping it to be absorbed into your system."

Check out more Foods to eat before bedtime from The Health Central Network

There are other things too. This is just a start!

There is Proof that sleep patterns affect MS!

If you've been having sleep issues and feeling more fatigued, there is proof that the two go hand in hand.

Check out this study: "Treatment of sleep disorders can improve fatigue and other clinical outcomes in MS."

“@MSBuzzNews: Multiple Sclerosis Research: Treatment of sleep problems reduces fatigue: Epub: Côté et al. Impact of sleep diso... http://t.co/f68LV6M8”

Ok kids. There is more to come on this and would like your thoughts but there's a high Sierra creek calling my name....

Sleep Disorders and Chronic Illness 

from Lisa Emrich of Brass and Ivory: Life With MS and RA

Sleep disorders, especially sleep apnea, can cause fatigue and increase the risk of cardiovascular disease.  Untreated sleep apnea can lead to depression, heart disease, diabetes, obesity, and excessive daytime sleepiness.  Stress hormones released during frequent drops in blood oxygen level caused by sleep apnea increase the risk of high blood pressure, heart attack, stroke, irregular heart beats (arrhythmias) and heart failure.  Excessive sleepiness can lead to fatal car crashes and accidents at work.

Sleep disorders may be under-diagnosed in both rheumatoid arthritis and multiple sclerosis, according to research.  For information regarding sleep disorders, including sleep apnea, and their connection with RA and MS, please read the following posts I wrote this week for HealthCentral.

Read:

• Sleep Apnea: Is RA Connected with Sleep Apnea? (Part One) 
• Sleep Apnea: How is it Diagnosed and Treated? (Part Two)
• Multiple Sclerosis and Sleep Disorders: Do You Suffer Fatigue and Daytime Sleepiness? (Part Three)

This concludes the 122nd edition of the Carnival.  (Apologies for the late posting.)  The next Carnival of MS Bloggers will be hosted here on September 13, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 11, 2012.

Thank you.

Comments for this post.

Two-year Update on MS Society-Funded CCSVI Projects

The National MS Society has released a two-year progress report on the seven society-funded CCSVI research studies in MS.  While some researchers have presented preliminary findings at the ECTRIMS conference in October 2011 and the AAN conference in April 2012, most researchers are still in the process of completing their projects.

Updates for each of the seven projects (as of January 2012) are available on the NMSS website.  Click on the title of the research project to open up a more detailed description of the project and preliminary results, including links to abstracts presented at ECTRIMS by Drs. Fox and Wolinsky.  Details of the posters presented at AAN by Drs. Fox and Wolinsky are included in the Society’s news bulletin of May 16, 2012.

One team of society-funded researchers from Calgary has published a paper based on the cases of five people who had experienced medical complications after undergoing CCSVI venoplasty procedures: “Complications in MS Patients after CCSVI Procedures Abroad.” Burton JM, Alikhani K, Goyal M, Costello F, White C, Patry D, Bell R, Hill M. (Calgary, AB) Can J Neurol Sci 2011 Sep;38(5):741-6. 

For information regarding other CCSVI-related studies, the CCSVI Alliance maintains a searchable database of published articles.

National MS Society Press Release (May 4, 2012):

Researchers Continue With Their Progress in the Seven Society-Funded CCSVI Studies in MS

Seven research projects investigating CCSVI (Chronic Cerebrospinal Venous Insufficiency) and MS -- launched with a $2.4 million investment by the National MS Society and the MS Society of Canada -- have reached the two-year milepost.

The funded multi-disciplined researchers have been reporting significant progress in their two-year study goals. As of July 2012, most of the investigators are in the process of completing their projects and expect to do so within the next year. Although the work continues for several of the teams, some are already presenting preliminary results at medical meetings, and all have shared technical advice so that the projects can move forward as smoothly and quickly as possible.

The need for continued work beyond the two-year grant funding period is not uncommon, as practical and logistical issues begin impacting on projected timelines, including such items as:

• getting proper protocols in place;
• applying for and gaining approvals from the required Institutional Review Boards in the U.S. or the Research Ethics Board in Canada, a requirement established by regulatory authorities to protect humans involved in research projects;
• getting technicians and other team members trained on how to conduct appropriate screenings; and
• recruiting study participants.

After the research projects are completed, the data collected in these studies will be analyzed and submitted for publication in one or more scientific journals so that other scientists can evaluate and comment on the findings. Currently it is not known when the full data and results will be available, though updates will continue as appropriate to reflect the ongoing transparency of the work being supported by the U.S and Canadian MS Societies. Results from the seven projects, as well as other studies underway around the globe, will help guide our planning for future investments in this area of research.

Research project highlights and progress

• The teams include an integration of experts drawn from all key relevant disciplines including neuroradiology, neurovascular imaging, MS imaging, vascular surgery, biostatistics, interventional radiology, interventional neuroradiology and MS clinical neurology. Bringing together experts across these areas will help to facilitate understanding of CCSVI in MS as quickly as possible.
• The research teams have recruited and scanned a broad spectrum of people with MS and others to build understanding of who may be affected by CCSVI. In addition they are refining CCSVI imaging methods for accuracy and consistency to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process. 
• Already more than 900 people have undergone scanning with various imaging technologies being used by the studies, including the Doppler ultrasound technology used by Dr. Paolo Zamboni and his collaborators, as well as magnetic resonance studies of the veins (MR venography), catheter venography, MRI scans of the brain, and clinical measures.

Some of the teams have been trained in, and are using, the ultrasound technique originally published by Dr. Zamboni. Others are using the same methods but are utilizing standard Doppler ultrasound machines rather than purchasing the specific machine used by Dr. Zamboni’s team. 

Future Steps – Clinical Trial and Live Webcast PlannedGrantee results will help guide future steps, including the development of a clinical trial to test whether treating vein blockages is a safe and effective therapy for people with MS. The Canadian Institutes of Health Research (CIHR) announced in April 2012 that a research team had been chosen to conduct a phase I/II clinical trial to determine the safety of venous angioplasty and obtain evidence on patient outcomes in people with MS. The location of the study has not yet been announced.  The clinical trial is a collaborative initiative between the CIHR and the MS Society of Canada.

At this point, no connection has been confirmed between CCSVI and MS, in fact, CCSVI appears to occur in many people who do not have MS. Although some individuals who have MS have undergone surgical procedures for CCSVI, there has not yet been a controlled trial to determine its effectiveness in treating the symptoms or course of the disease. In addition, the U.S. FDA has issued a safety communication about potential risks associated with procedures and devices used to treat CCSVI, encouraging additional research.

The National MS Society shares in the public urgency to advance the understanding of CCSVI as quickly as possible, and is urging researchers to complete their studies and to analyze and publish their results as soon as possible. The Society plans to host a live Webcast in the spring of 2013 as a forum for a discussion about the progress made in the understanding of CCSVI and MS. 

For those who may not want to wait for research results in order to get tested for CCSVI and/or who want to undergo surgical treatment now, this is a personal decision to be discussed with their healthcare providers. To get the most reliable results about benefits and risks of any surgical procedure that might attempt to address blood flow in or out of the brain, as well as to further the overall understanding of CCSVI and how it may affect people diagnosed with MS, it is important that such surgery be performed as part of controlled trials, especially in light of adverse events reported to date.

Sleep Disorders and Chronic Illness

Sleep disorders, especially sleep apnea, can cause fatigue and increase the risk of cardiovascular disease.  Untreated sleep apnea can lead to depression, heart disease, diabetes, obesity, and excessive daytime sleepiness.  Stress hormones released during frequent drops in blood oxygen level caused by sleep apnea increase the risk of high blood pressure, heart attack, stroke, irregular heart beats (arrhythmias) and heart failure.  Excessive sleepiness can lead to fatal car crashes and accidents at work.

Sleep disorders may be under-diagnosed in both rheumatoid arthritis and multiple sclerosis, according to research.  For information regarding sleep disorders, including sleep apnea, and their connection with RA and MS, please read the following posts I wrote this week for HealthCentral.

Read:

Sleep Apnea: Is RA Connected with Sleep Apnea? (Part One)

Sleep Apnea: How is it Diagnosed and Treated? (Part Two)

Multiple Sclerosis and Sleep Disorders: Do You Suffer Fatigue and Daytime Sleepiness? (Part Three)

Welcome MS Bloggers

• Frisco Mama - Lisa  
• Beauty and Meaning in a Broken World -  
• Fiona's MS Blog - Fiona 
• He Has MS - ILA 
• The Girl with MS -  
• Lost and Found - Donna 
• Our Crazy - Kerewin 
• MS Mummy of Two - Chelsea

The directory of the MS blogging community can now be found on this page.

Victory in Victoria, British Columbia

(Previously unpublished post from the Alaska Cruise in 2010.)

Our final stop on the 2010 Alaskan cruise was Victoria, British Columbia. Rob and I visited the Butchart Gardens, a 55-acre estate which hosts the famous Sunken Garden created in a former limestone quarry.

Photo opportunities abound throughout the property including innumerable varieties of trees and flowers, a snake sunning itself on a stone wall (watch where you sit!) and a hummingbird feeding.

Flamingos, koi, tropical foliage, orchids, and butterflies with wing spans ranging from one to nine inches were seen at the Butterfly Gardens. Some of the butterflies, like the one to the left, had just emerged from the cocoon and were drying out their huge wings.  Other butterflies were flitting about so quickly that it was difficult to grab their picture.

Word of caution: the controlled tropical environment can be a challenge if you are heat-sensitive. I was happy to find benches available.

Before heading back to the ship, Rob and I stopped for a “tasty beverage” (aka beer) and a bite to eat. We listened as people at the next table were discussing the business of art auctions on cruise ships. We soon realized that they were talking about the auctions on our cruise ship. Very interesting conversation.

We were hungry and probably anything would taste good, but the seafood chowder was so good at The Sticky Wicket, an English pub, that Rob and I returned during a subsequent visit to Victoria in 2011. Oh, and Rob approved of his beverage as well.


Reflections
Two years have passed since Rob and I embarked on this once-in-a-lifetime voyage. The greatest memories come from the people (ladies at our dining table were a hoot), the connection with other MSers, and the time spent exploring the area. We enjoyed ourselves so much that we joined Rob’s family on another cruise to Alaska the following summer, making it a twice-in-a-lifetime adventure.