A Publication of Multiple Sclerosis Resources of Central New York, Inc. ®
As I write this, the last few days of the New York State Fair are taking place. As I look back, I remember all the days at the Fair that we worked our booth promoting the brick walkway. Many of you have called and asked about the bricks and I want to update you again. The bricks will have a permanent home when all the renovations are complete to the fairgrounds. We really appreciate your patience and under-standing. It was many years ago that we all sat around the painted mural with the Funicello family and had the dedication. Times have changed and we do know that we will be given a location very soon. The Fair has made major changes, such as the new entry way, Expo Center, greener spaces and more seating. We hope by late fall to have an idea where the MS Walkway will be.
With fall upon us, I like to remind everyone that MS Resources will soon be conducting the one and only direct mail campaign for the year. This is the only time that we send a letter of request to you between now and November. Many of you have been most generous over the years and we are grateful and appreciative.
Annette has chosen to write about good sleeping habits and I believe that the info can be advantageous for most of us who may have trouble sleeping. Be sure to read it on the next page and try some of the tips
We hope to see you at one of the many fall events including the health fair. Stop by and say hi…Happy Fall everyone.
Look inside for:
- Good Sleep
- Annette’s Corner
- Denny’s Fund Raiser
- Smile.Amazon.com Info
- Support Groups
- Health Fair
Good Sleep Hygiene
We have received numerous calls over the past few months related to MS and sleep. There is information in the book,” Fighting Fatigue in MS”, so I thought I would highlight some of the excerpts from this chapter.
Getting Enough Sleep:
Sleep is important for both physical and mental health, and getting enough sleep at night is essential for just about everyone. Eight hours is the most common recommendation, but an individual’s need for sleep actually varies depending on several factors, these include:
**Genetics , **Activities you do to control alertness (ex. Coffee drinking) , **Quality of your sleep , **Your unique sleep cycle , **Activities done during the day (ex. Exercising)
All of these factors, plus your symptoms of MS, interact to determine how much sleep you may be getting. Though some of these factors, like genetics, cannot be controlled, it can be beneficial to adjust the ones that you can control if they are standing in the way of your good night’s sleep.
Tips to develop good sleep hygiene:
Set a fixed bedtime and wake –up time , Block out noise and light , Have a comfy bed and bedding , Keep temperature where you like it , Do not use the bed as an office , Develop a bedtime ritual , Do not want TV in bed , If you cannot go to sleep in 15-20 minutes, get up and read and try again
An adequate amount of sleep is important for daily functioning
Too little sleep has a negative effect on health, alertness and performance
Figure out what is causing your lack of sleep and try to fix it
Talk with your doctor about your symptoms of MS and medications that may be affecting your sleep
What about taking a NAP????
Nap taking is ok when a person has MS as it can have restorative effects. This is something that must be approved if you are still actively employed.
Benefits of Napping
1: Increase alertness , 2: Increase energy , 3: Increase productivity , 4: Improves memory , 5: Improves health , 6: Increases relaxation
For more information and to request the book, call the Office at (315) 438-4790.
“Fighting Fatigue In MS”, Lowenstein, Nancy A. Demos Health 2009.
MS Resources Support Group Information
Interested in sharing experiences about MS, come with family/friends to a meeting.
2nd Tuesday of the month
Lincoln Middle School
1613 James St. Syracuse NY 13203
6:30PM-8:00PM School Cafeteria
Contact: Angela McBride- (315) 876-2614
Madison County Area-
1st Monday of the month
The Grand, Russell Street, Chittenango – Conference Room
Contact: Donna Denison for more info at (315) 655-3517
Auburn/Cayuga County Area
4th Tuesday of the month
Finger Lakes Mall, Rts. 5 & 20
Auburn, Community Room
Enter at Mall Entrance by Penney’s. 7PM
Contact: Susan Rusinko (315) 255-0982 or Bernie Caruana at (315) 252-1183
3rd Tuesday of the month
United Church of Christ Church (UCC) in
Bayberry, 215 Blackberry Rd. 6PM – 8 PM in Fellowship Hall, follow the signs to the meeting room.
Contact: Carolyn Vickery –(315) 409-9692 or Pat Apicella – (315) 720-7141 or (315) 303-5648
Broome County Group
4th Thursday of the month
Willow Point Nursing Home Facility
3700 Old Vestal Rd, Vestal NY
6:30PM – 8:00PM
Contact: Steve Yeager – (607) 785-7703 or Rick Fiori – (607) 321-1489
MS Breakfast Buddies
Meeting in the Binghamton area:
Contact Sue Maston: (570) 623-2302 for times and locations.
1st Tuesday of the month
Fairmount Community Library
Chapel Dr. Fairmount NY 13219
1:30PM – 3:00PM Community Room
Contact: Ericka Braundel- (315) 391-6912
Amazon.com Offers Incentives to Charity
For all of you who purchase items through Amazon.com, we have news for you. If you search Smile.Amazon.com and enter Mul-tiple Sclerosis Resources in the Charity section, we will receive .5% of your overall sale. Simple, it sure is! Log onto the computer and remember MS Resources as you make your pur-chases, but it must be entered through Smile.Amazon.com. Questions, call Jessa at (315) 438-4790. We know that there are many people who shop on-line so spread the word and don’t forget us during the year.
Post on your face-book page
So your family, friends and all your contacts will know about it. Paste it, share it, Use it!
- Amazon donates 0.5% of the price of your eligible Smile.Amazon purchases
- Smile.Amazon is the same Amazon you know. Same products, same prices, same service.
- Support your charitable organization by starting your shopping at Smile.Amazon.com.
BE Sure you…
Select a Charity (This is where you would type in Multiple Sclerosis Resources of Central New York, Inc. )
I would like to use my corner to salute a profession that works so hard and should be thanked more often and that is Nurses! When I attended college at Niagara University, which in the 1980’s was the mecca for nursing students, I began to appreciate all that this vocation was about. I was fortunate to have a nursing student as my roommate and she studied more than anyone could imagine. I remember days at the campus store when I thought that nursing students were paying by the pound for their textbooks, because they were so HUGE.
The Anatomy & Physiology book could have been registered as a legal weapon because if that thing ever fell off the desk, it could crush a small child. I watched in utter amazement as my roommate would haul these books around and study, study, study. There were the early morning clinical rotations at the hospitals in Buffalo and so much more. There were some social moments in the school of nursing as well, such as Pinafore night where the nursing students wear their pinafores out and people sign them, (though I never really understood this) it was a fun night out. There was the nursing convocation which was held before graduation and there was always a student chosen by their peers to deliver the speech and in 1985 that person was my friend Anne Mitchell. She was a brilliant student and an amazing speaker. I saw first- hand all the hours, all the tears, and all the jubilation that came along with this major. My roommate was going to make it and graduate to be a Nurse! I was so proud. As time has certainly rolled by, and of course I have, as most of us have had, been in the hospital for myself or a loved one and had the opportunity to interact with many nurses. The compassion, knowledge and overall care that these people demonstrate day after day, patient after patient is inspiring.
My mother had a recent stay at Upstate’s Community campus and I was grateful for the nurses she had. They would sit on her bed, hug her, reassure her, visit with her while she ate a meal and genuinely care about her wellness. I had slept there several nights and they were equally as attentive to me with getting me blankets, sandwiches at night and countless ginger ales and inquiring if I was “OK”. This profession deserves a lot more Thank You’s than I think they get. Being in a hospital is not fun, it can be scary and unsure for most of us but when you have a good nurse, who is in your corner, your stay should be more tolerable.
My roommate did indeed graduate right alongside me in 1985 and she went on to have a great career as a nurse. Next time you are visiting someone in the hospital or are there yourself, bring your nurse a box of candy or a batch of home-made cookies, believe me, they will love you for it and appreciate it.
I salute all that have chosen nursing as their career and special hugs to: Joanne C, Rose S, Chris M, Deb C, Laurie H, Olga G, Liz J, Anne D, Anne M, Molly S, Barb M and the current nursing class at Niagara University! You make us all so full of pride. Purple Eagle Pride.
MS Resources Health & Wellness Fair
The Health Fair has been such a big hit, we are doing it again. There will also be an educational program hosted by Genzyme, bookending the health fair.
When: October 16, 2018 –
Where: Barbagallo’s Restaurant, Molloy Rd. E. Syracuse NY
Free and Open to the General Public, though we encourage our clients with MS to come by and gather important information from the pharmaceutical companies and many other vendors.
There will also be a raffle to take part in and a chance to win a Prize for visiting all the booths at the fair.
Annual Mike Goss Memorial Comedy Night Scheduled
November 2, 2018 at Barbagallo’s Restaurant, Molloy Rd.
Food/Drink – on your own
Doors Open: 6PM Show Starts: 7:30PM
Bringing the best in comedy are:
Host: Bill Lake
Bill has performed at the Asheville Comedy Festival, and at clubs and venues across the northeast. He has written jokes for David Letterman, Craig Ferguson and Saturday Night Live.
Feature: Steven Rogers
Steven Rogers is a NYC based comedian who has been making others laugh for most of his life. In December 2017, he was named funniest clean comic at the Manhattan Comedy Festival. Being a skilled joke writer, Steven has been featured on numerous websites such as eBaum’s World, the Chive and College Humor.
Headliner: Raanan Hershberg
Raanan Hershberg is a neurotic, overweight Jew originally from Louisville, Kentucky. He was a finalist in StandUp NBC and the Laughing Skull Festival in Atlanta, Georgia.
Painting with a Twist
Calling all painters who enjoy an evening out to channel your inner Monet and Picasso. We are hosting our fall Paint Night to benefit MS Resources.
November 8, 2018 at the Painting with a Twist location in Dewitt. Cost is $55 and this includes everything you need for the evening.
Dennys Carrier Circle Fund Raiser
Dennys will be hosting a month long promotion during November at the Carrier Circle location only to benefit MS Resources. “The Feast American Diners” campaign will offer different opportunities for you to support our agency. At the close of the month long campaign, Denny’s will present MS Resources with a check from all the proceeds they raised. 20% of sales will be donated to the agency, you must present a flyer to the server which will be available Nov 1 – 30th on the MS Resources website.
ASK YOUR NEUROLOGIST
By-Randolph W. Evans, MD, FAAN, Responds to this question:
How are lumbar puncture headaches prevented and treated?
Up to 30% of patients experience a headache after a lumbar puncture (also known as a spinal tap), a procedure that involves inserting a small needle into the membrane around the spinal cord at the lower back to draw out cerebrospinal fluid.
The headache, which is typically caused by spinal fluid that leaks out when the needle is inserted, is usually dull and throbbing gets worse when you sit up or stand. Pain can range from mild to incapacitating and may be accompanied by dizziness, ringing in the ears, blurred or double vision, nausea and neck stiffness.
Preventing Spinal Headaches:
Lumbar punctures are preformed to diagnose conditions such as meningitis and other infections in the central nervous system; neurologic diseases such as high-pressure headaches, multiple sclerosis, or Guillain – Barre syndrome, a disorder of peripheral nerves; or cancers of the brain. They are also used to deliver a spinal anesthetic for surgery.
The best way to prevent a headache is for the doctor to use what’s known as an atraumatic needle, which is less likely to allow spinal fluid to leak. The brain floats in spinal fluid, and a leak reduces the volume of that fluid, causing the brain to sag inside the skull, which triggers a headache.
Treating Spinal Headaches:
If you experience a headache after a lumbar puncture, tell your doctor immediately as he or she may prescribe oral painkillers. Often, the headache will resolve on its own; resting, staying hydrated, and having drinks with caffeine or caffeine supplements can help relieve the pain. If the pain is more severe when you stand or sit up, lying down may also help.
Some people are more prone to these types of headaches, including females, adults ages 30 to 50, people with a history of headaches, and thin individuals.
Follow Up Treatment:
If the headache persists, patients may benefit from bed rest, fluids and intravenous caffeine. If the headache worsens, neurologists may perform epidural blood patching, a procedure that involves drawing blood from the patient’s arm and injecting it into the spinal canal outside the dura in the lower back. The patch raises the fluid level, and usually relieves the headache. Doctors may have to repeat the procedure for complete relief. If the headache still doesn’t resolve, doctors may use a type of surgical glue to patch the hole where fluid is leaking or close the hole surgically with stitches or other material.
Dr. Evans is clinical professor of neurology at Baylor College of Medicine in Houston, and a fellow of the American Academy of Neurology and the American Headache Society.
Brain & Life Magazine – August/September 2018
Home For Sale
Accessible home on Willowbrook Dr. in Liverpool for sale. Home has ramp, tracking system, roll-in shower, remodeled kitchen, 4 bed-rooms. First floor bedroom. Owner is relocating out of state. Inquiries to: Sue Bard (845) 657-4004. Home is move in ready. Asking around $169, 900.
Check it out, Liverpool school district.
2000 Dodge Ram For Sale
6 Cylinder model 2500, asking $6,400
Auto Transmission, Cruise Control, Air Conditioning, Power Locks, AM/FM Radio, Cassette Tape Deck, Hitch (No Ball), 2 New Front tires, Full Size Spare Tire, Wheelchair Lift (62,000 Miles)
Call Peter – (315) 468-6408
Comfort Food on a Cool Night
Classic Baked Mac and Cheese:
• Kosher salt
• 8 ounces fusilli or other short pasta
• 4 tablespoons unsalted butter, plus more for the baking dish
• 1/4 cup all-purpose flour
• 2 cups whole milk, heated
• 1 bay leaf
• Pinch of freshly grated nutmeg
• 2 1/2 cups shredded sharp white cheddar cheese
• 1 1/2 cups shredded gruyere cheese
Bring a pot of salted water to a boil; add the pasta and cook until al dente. Reserve 1 cup cooking water, then drain the pasta. Preheat the oven to 400 degrees F.
Meanwhile, melt the butter in a large saucepan over medium heat. Whisk in the flour and cook, whisking, 2 minutes, then whisk in the milk. Add the bay leaf, nutmeg and 1 teaspoon salt and simmer, whisking occasionally, until thick, 8 minutes. Remove the bay leaf and stir in 2 cups cheddar and the gruyere. Stir in the pasta and the reserved cooking water to make a loose sauce. Butter a 2-quart baking dish; add the pasta mixture and top with the remaining 1/2 cup cheddar. Bake 15 minutes. Enjoy!
Call us if you need us…..
Multiple Sclerosis Resources of CNY, Inc. ® is a source of information concerning topics on Multiple Sclerosis. The information provided to you is derived from professionals in the field and do not represent our recommendations or opinions. We do not endorse any products, services or specific treatments. For the best advice for you, please consult your physician.
WE ARE ALL SO PROUD TO BE ABLE TO ASSIST OUR CLIENTS IN OUR SERVICE AREA…
Newsletter is written and edited by: Annette Simiele
Call (315) 438-4790/1-800-975-2404
Fax (315) 438-4704
Website – www.msresources.org