A Publication of Multiple Sclerosis Resources of Central New York, Inc. ®
Message from the Executive Director:
I am pleased to announce the 20th Anniversary of MS Resources and our commitment to creating awareness about MS and providing resources for those affected by this disease. Twenty years is a major milestone for a non-profit which relies completely on the generosity of others. MS Resources is an agency which generates income from special events, private donations and grants.
Over these last 19 years we have had many hills and valleys. There always seems to be an ever growing need among our clients for additional services and we are so proud to be able to deliver these to them to make their lives a little easier. Obstacles and barriers need to be overcome and we do our very best to be sure we can meet these head on. Our advocacy on behalf of our clients has been tremendous. Annette, Tammy and myself have engaged in letter writing campaigns to re-instate certain medications on all tiers of insurances, we have been on the front lines of legislation and rallied in Albany for the Compassionate Care Act. When you make something happen for someone else, you know the burden has been removed from them and they can flourish.
So what is in store for the 20th Year…we will kick off this anniversary year at the Syracuse Walk on Sunday, March 4th at Destiny USA and follow with walks in Binghamton and Utica. We will have plenty of surprises along the way all year.
I hope that the next twenty brings about so much more in the realm of uncovering some of the mysteries of MS, better coverage for medications and more programs to educate our clients.
Look inside for:
- Note a few changes to the Support Groups for Binghamton & Fairmount
- Annette’s Corner
- Walks Coming Soon
- Smile.Amazon.com Info
- Uhthoff’s Phenomenon – What you should know
- Share the 20’s
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
(note new location)
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
(note day change)
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 did hear back from a few of you about my first article and I do so appreciate your positive feedback.
The Friends We Treasure:
When you are a kid, you make friends on your street, from activities and from your family. My earliest friendship started at 4 years old with a childhood friend of my mother’s. Her eldest daughter was my age. We will call her Sharon. We went to nursery school together, lived on the same street and attended the same private elementary school. There were many days I did not want to go to school, but if I knew Sharon was going then I would too.
We were glued at the hip in the summer, riding bikes, swimming in her pool and just “hanging out”. We added people here and there, but were always as close as two friends could be. When we went to high school we developed many new friends, but always worked on projects together, sat next to each other in a shared class and talked on the phone at night as most teenage girls did and still do. It was easy to do a poster project with Sharon as we really had very similar thoughts and creative ideas on how things should get done. We went to different colleges, but still visited each other when home and still talked all the time on the phone. We never drifted apart, because of one thing – we valued each other and we definitely worked at maintaining an enduring friendship. What does it take to be life-long friends? It takes a commitment, dedication and time. We still remain good friends to this very day.
We have laughed with each other, cried with each other and above all been there for each other. So if you have a dear friend, keep working at your friendship. Never give up, even if you should argue, work it out, it is worth it. I really cannot remember any argument between Sharon and I, never an ill word, just mutual respect and a bond that was established at a very early age. Our parents showed us the way as our mother’s were friends since 12 years old and up until Sharon’s mom passed a few years now, they would see other when they could and speak on the phone daily.
My mother truly misses this friendship and has never found another in over 60 years to replace it. Incorporate these people into the fabric of your life now, don’t let time or other distractions take away from those you have built a life-long relationship with.
As for my friendship with Sharon, we will never drift apart!!!
Uhthoff’s phenomenon is when the vision problems associated with MS worsen temporarily following an increase in body temperature from activities such as exercising or bathing in hot water. It can cause the symptoms of optic neuritis to worsen temporarily. These symptoms can affect one or both eyes, and include:
Blurred Vision, Worsening Vision , Eye pain when moving the eye , Visual disturbances, such as flashes of light.
The worsening of vision can occur quickly, over the course of a few hours or may take up to a week. A study from a few years ago also found that heat sensitivity can make the symptoms of MS worse including:
Fatigue, Pain, Difficulty concentrating , Urinary problems, Heat sensitivity affects upwards of 60-80 % of people diagnosed with MS.
Activities that may increase the incidence of overheating include:
Exercise; Sunbathing or being outdoors in hot or humid weather; Bathing in hot water; fever; using a hairdryer; some hormonal changes and hot flashes in menopause.
Managing Uhthoff’s Phenomenon
Uhthoff’s phenomenon is a temporary condition and typically resolves once the body’s temperature has returned to normal. There is no treatment specifically for Uh-thoff’s phenomenon, but there are many steps a person can take to manage the symptoms.
Try not to panic, as the symptoms again are temporary. It may help to call a friend or family member to assist you while your vision is impaired. The visual symptoms will improve with rest and time. The best way to prevent another episode is to avoid overheating and remain cool.
You can cool down by
• Drinking very cool liquids , • Sucking on ice cubes , • Taking a cool bath or shower , • Find shade if you are outside , • Use a fan or air conditioner ,• Wear a cooling garment , • Avoid hot environments such as warm houses, stores, spas, hot tubs or saunas , • Wear light colored and loose fitting clothing , • Wear a wide brimmed hat to shield the eyes
Some people with MS do not experience Uhthoff’s phenomenon or any changes in their symptoms after a change in body temperature. If a person is not sensitive to heat, they will not need to make any of the preventative changes.
See a Doctor when
A person with MS or optic neuritis should speak to a doctor if their symptoms worsen after a change in body temperature, especially if it is the first time. Someone who has experienced Uhthoff’s phenomenon and who knows what to expect and how to cool down may not require medical care.
A person with MS or optic neuritis should speak to a doctor if their symptoms worsen after a change in body temperature, especially if it is the first time. Someone who has experienced Uhthoff’s phenomenon and who knows what to expect and how to cool down may not require medical care. www.medicalnewstoday.com/articles
Potential path to repair MS-damaged nerves
Gene expression in specific cells and in specific regions can provide a more precise, neuroprotective approach than traditional treatments
Date: December 26, 2017
Source: University of California – LA
Gene expression in specific cells and in specific regions can provide a more precise, neuroprotective approach than traditional treatments for neurological diseases. For multiple sclerosis, specifically, increasing cholesterol synthesis gene expression in astrocytes of the spinal cord can be a path-way to repair nerves that affect walking.
Multiple sclerosis is an autoimmune, neuro-degenerative disease, characterized by dis-tinct disabilities affecting walking, vision, and cognition, to name a few. MS patients differ markedly from each other regarding which disability affects them the most. Inflammation strips the myelin coating from nerve cell extensions, called axons, and con-nections at the ends of nerves, called sy-napses, are lost, together disrupting signal-ing and eventually causing permanent dis-ability depending on where this occurs. UCLA researchers proposed that molecular mechanisms behind each disability may dif-fer, and that neuroprotective treatments tailored for each disability may be more effective than nonspecific treatments aiming to reduce a composite of different dis-abilities. The team focused on astrocytes, a type of brain cell that becomes activated in MS and plays several important roles in disease, examining gene expression in as-trocytes in different regions.
Working with a mouse model of MS, the research team assessed astrocytes in various regions of the brain and spinal cord known to be involved in walking, vision or cog-nition. They compared gene expression changes between regions that correspond to different disabilities. In the spinal cord — an area that’s critical for walking — they found a decrease in the expression of cholesterol synthesis genes. Cholesterol does not leave the blood and enter the brain, instead it is made in astrocytes and plays a role in mak-ing myelin, the nerve coating, and synapses, the nerve connections. They hypothesized that while inflammation causes loss of myelin and synapses, it is the decrease in cholesterol synthesis gene expression in astrocytes that explains why lesions do not repair in MS. They treated MS mice with a drug that increased expression in cholesterol synthesis genes — and this resulted in im-proved walking ability.
This disability-specific discovery approach represents a strategy for finding neuro-protective treatments for neurodegenerative diseases that are tailored to repair damage for each disability, one at a time, in contrast to a “one size fits all” treatment approach.
In addition to senior author Dr. Rhonda Voskuhl, who directs UCLA’s Multiple Sclerosis Program and holds the Jack H. Skirball Chair in Multiple Sclerosis Re-search, study co-first authors were Noriko Itoh, Yuichiro Itoh, and Alessia Tassoni, with other co-authors including Emily Ren, Max Kaito, Ai Ohno, Vista Farkhondeh, Hadley Johnsonbaugh, Yan Ao, Josh Burda and Michael Sofroniew, all of UCLA.
The work was supported with funding from the Conrad N. Hilton Foundation, the National Institutes of Health, the California Community Foundation, the Tom Sherak MS Hope Foundation, the Rhoda Goetz Foundation for Multiple Sclerosis, and other Nerve Cont’d
Materials provided by University of California – Los Angeles. Note: Content may be edited for style and length.
Noriko Itoh, Yuichiro Itoh, Alessia Tassoni, Emily Ren, Max Kaito, Ai Ohno, Yan Ao, Vista Farkhondeh, Hadley Johnsonbaugh, Josh Burda, Michael V. Sofroniew, Rhonda R. Voskuhl. Cell-specific and region-specific transcript-tomics in the multiple sclerosis model: Focus on astrocytes. Proceedings of the National Academy of Sciences, 2017; 201716032 DOI: 10.1073/pnas.1716032115
We are in full swing for the 2018 Walks. Syracuse will celebrate the 20th Walk on Sunday, March 4th . We will once again be in the canyon area of Destiny USA. Binghamton will follow on Sunday, March 18th in Center Court of the Oakdale Mall in Johnson City followed in April by the Utica Walk on the 8th at Sangertown Square in the Target Hallway area.
You can register yourself, your team, etc on the website at www.msresources.org or call us at (315) 438-4790. When you register on-line you can download and print your pledge forms and also read the Walk Newsletters # 1 & #2.
We are anticipating a huge turnout for the events and we hope you will join us.
Thanks in part to our many lunch sponsors for Syracuse including:
INFICON , Carrols Restaurant Group, Inc. ,Syracuse Office Environments , Twin Trees Too! , Joanne Catanzarita, Board Member , K & A Services , David & Marianne Samora , Care Fare, LLC , Medical Marijuana Consultants
(at the time of this publication, all lunch sponsors may not have been confirmed – we apologize for any omissions)
Share the 20’s
MS Resources is asking for your help. In honor of the 20 Years of Service of the agency we would like to gather as many $20 gift cards as we can by November 4th. We will then, as we end the 20th Year use these in a drawing for all clients. It does not matter where you live, or where you get the gift card, we will use them all. Ask your favorite restaurant, hair salon or independent store manager. We want to Share the 20’s with our clients, the people that we are committed and dedicated to. Gift cards can be sent directly to MS Resources, PO Box 237 E. Syracuse NY 13057. If the person would like a receipt, please pass along their information. THANK YOU!
Gifts of the 20th Anniversary
China — The Traditional 20th Anniversary Gift
China symbolizes the beauty, elegance and delicateness. Don’t confine this to dinner plates that you sit down with only on special occasions. Think picture frames or even figurines.
Platinum — The Contemporary/Modern
20th Anniversary Gift
Platinum is strong and enduring, and it offers multitude of gift possibilities as well. Think jewelry or a platinum-dipped rose or two.
The 20th Anniversary Gemstone
The 20th Anniversary Color
Either emerald green or white can be used as a traditional 20th anniversary color. What to do with it? Think of things that traditionally come in this color. They can be silly or sweet or a combination of both.
The 20th Anniversary Flower
Daylillies are rugged and strong.
Finding any similarities between MS Resources and the above list of descriptions? We think that there may be one or two, MS Resources is strong – STRONG in the fight against MS and enduring, as we have been in existence for 20 Years. We are delicate when handling client issues that may be life-changing.
Call us if you need us…..
Multiple Sclerosis Resources of CNY, Inc. ® is a source of information concerning topics on Multiple Sclerosis. The information pro-vided to you is derived from professionals in the field and do not represent our recom-mendations 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