The Resources listed below are for informational purposes only. It is up to the individual and their doctor to choose which information is best for them. If you have any additional ideas or suggestions, please contact me at mcmsgroup@aol.com so we can share them with others.
Newly Diagnosed Teleconference MSActiveSource FREE Live teleconference for people new to MS, featuring MS Experts. Ask, Listen, Learn Click here for more information or type or click http://www.msactivesource.com/msavProject/msas.portal/_baseurl/twoColLayout/SCSRepository/en_ US/msas/features/new-to-ms.xml
NMSS National MS Society NMSS
www.nationalmssociety.org
http://flc.nationalmssociety.org/site/PageServer?pagename=FLC_programs_homepage
http://www.nationalmssociety.org/InsideMS.asp (Publications)
www.nationalmssociety.org/advocacy (Advocacy Program on Stem Cells, SSDI, etc.)
www.nationalmssociety.org/SSDI (Social Security MS Handbook)
NMSS MS Learn Online NMSS
www.nationalmssociety.org/Webcasts (Webcasts)
http://www.nationalmssociety.org/MS%20Learn%20online.asp (Previously Recorded Webcasts)
MSF MS Foundation MSF
www.msfocus.org
http://www.msfocus.org/publication_subscriptions.php (Publications)
Making Strides: Perspectives on Living With MS, has provided up-to-date information and practical tips for people living with MS, their families, and care partners.
http://www.making-strides.net/default.aspx
New Reads From The MSF Lending Library
The MSF Lending Library delivers books, CDs, and DVDs to your door upon request. You may borrow books at http://msfocus.org/publication_lending.php or by calling 1-888-MSFOCUS (673-6287)
MSAA MS Association of America MSAA
www.msaa.com
http://msaa.com/reading.html (Publications)
MS Center of FL Foundation MSCFL
www.floridams.org
Myelin Repair Foundation
http://www.myelinrepair.org/
Cooling Program
http://www.msfocus.org/programs_colapp.php MSF
http://msaa.com/programs/cooling.html MSAA
Homecare Assistance Program
http://www.msfocus.org/programs_patientsvc_homecare.php MSF
Assistive Tech. Equipment
http://www.msfocus.org/programs_patientsvc_equip.php MSF
Equipment
http://www.msaa.com/programs/equipment.html MSAA
Assistive Devices (Very thorough Listing) and Adaptive Equipment
http://aapdamerica.org/Corporate/assistive.html
safelinkwireless.com
Free phone/minutes to those that qualify - Ex: Household of 2 can have yearly income of $18,900. Remember only 1 per household
Adaptive Fishing Equipment
http://www.cfhnb.org/equipment.html
Bowling Ball Rowler
http://www.noveltybowlingstuff.com/prod_rowler.html
Stair-Climbing Wheelchair with 4 WD (Covered by VA)
http://www.ibotnow.com/index.html?from=listemail&ad=PMDHTML
The Orlando hospitality community welcomes guests with disabilities by providing a number of services to make you feel more at home during your stay. Click to view a complete list of our members who provide services for guests with disabilities, or browse the following areas of interest:
Theme Parks/Attractions | Accommodations Transportation/Tours | Parking | Wheelchair, ECV Rentals
http://unitedspinal.orlandomeetinginfo.com/specialneeds.cfm
Home Modification Program
http://www.msaa.com/programs/home_modification.html MSAA
Brighter Tomorrow $1,000 Grant
http://www.msfocus.org/programs_grants_bwmg.php MSF
NMSS Quality of Life $1,500 Grant
http://flc.nationalmssociety.org/site/PageServer?pagename=FLC_programs_ emergencyfinancial NMSS
Center for Independent Living
Home and Vehicle Modifications Assisting people with disabilities in making arrangements for home and vehicle modifications and equipment. Our home and vehicle modification services provide funding for qualified individuals with disabilities to improve access in their home or vehicle. Services may include building ramps, widening doors, bathroom remodeling, and hand controls. Also provided are smoke detectors and doorbell signalers for the deaf.
Local - Center for Independent Living of North Central Florida 3445 NE 24th St., Ocala, FL 34470 368-3788
For Home Remodeling, etc. Contact:: Larry Brown (c) (352) 816-0732 (Jean's Hubby) or John Canney (h) (352) 624-3534 (c) (352) 454-1470 Disabled Acces. Spec.
www.cilorlando.org
Home Instead - Local contact: Jim Samuelson, 1411 NE 22nd Ave., Ocala, FL 34470 - (352) 622-6447
These senior home care services may include assistance with trips to the doctor, reminders to take the right medication at the right time, meal preparation, light housekeeping, errands, shopping and even Alzheimer's and dementia care. The result is companionship allowing seniors to feel safe and independent while they age in place in the home they've lived in for years.
www.homeinstead.com
Integrity Home Health Care Richard Mitchell (352) 804-3077 (Cell) Email: rmitchellihhc@mfi.net
Country Side House Calls - They Bring the Clinic to Your Home!
www.countrysidehousecalls.com - Physician Assistant Making House Calls - $49 for the first 30 minutes in your home. (Additional Services Extra) - Treating Chronic Disease, Weight Management, Infections, Minor Injuries, Illness. Prescriptions, order and interpret diagnostic tests and xrays, referrals and phone call follow-ups. Call (352) 854-4985 - They will give you paperwork to submit to insurance company. Some insurance companies may reimburse you.
Portable Scooter
The Lexis-Light Is Easily The World's Lightest Scooter, Weighting Only 54 Pounds. The Lexis Light Easily Folds Into A Small Compartment That Will Fit In The Trunk Of 'Any' Car And Can Be Taken On A Plane As Carry On Luggage. Go to http://www.planetmobility.com/store/scooters/planet/lexuslight/index.html
MRI Diagnostic Fund
http://www.cilorlando.org
http://msaa.com/programs/mri_d.html MSAA
MRI Institute Follow-up
http://msaa.com/programs/mri_i.html MSAA
Lending Library
http://www.msaa.com/programs/lending.html MSAA
http://www.msfocus.org/publication_lending.php MSF
Talking Book (FL Bureau of Talking Library)
1-800-226-6075 - Ask for Michael Gunde
He'll send application and after having your Doctor sign for, you will receive Audio
Clinical Trials in Florida: http://search.centerwatch.com/default.aspx?&sf=f1&ia=Multiple%20Sclerosis&rg=FL&dn=&pc=
More Clinical Trials: http://www.clinicaltrials.gov/ct2/results?term=multiple+sclerosis
There are some ongoing trials in FL for secondary progressive, etc. If you click on the one you are interested in you can then click on locations and see if they are doing them in FL for that one
Homeopathic Trials: Clinical Trials - Esperanza Peptide - (The treatment is a Homeopathic sublingual once a day. It is their unique peptide ina saline solution that allows conduction function. It is safe and tasteless.) http://www.esperanzapeptide.net
CRAB Drugs:
Copaxone - Manuf: Teva Neuroscience (Shared Solutions)
www.copaxone.com
www.mswatch.com (support program)
Rebif - Manuf: Serono (Also includes novantrone for Progresive MS
www.rebif.com
www.mslifelines.com (support program)
www.msinbalance.com (teleconferences)
Serono offers 'head start' on MS drug access
Under the program, which is only being run in the US, participants will receive up to one year of therapy regardless of income level, with no more than a $50 co-payment required of any patient. Eligible participants are those with relapsing forms of MS who have either been newly prescribed Rebif (interferon beta-1a) or who have restarted the drug after having discontinued for more than 90 days.
http://www.in-pharmatechnologist.com/news/ng.asp?n=77929-emd-serono-ms-rebif-biogen
Avonex - Manuf: Biogen
www.avonex.com
www.msactivesource.com (support program)
Betaseron - Manuf: Berlex (Has Champions of Courage Program (up to $7,000 grant)
www.betaseron.com
www.mspathways.com (support program)
Berlex is establishing a new Patient Assistance Program (PAP) for Betaseron. Will go into effect January 1, 2007. You can contact Betaseron Founcation at 1-800
Experts Online
The Rocky Mountain MS Center has an Online Forum where anyone can get answers with MS. Please click the link below to check it out.
www.mscenter.org/forum
Web MD
http://www.webmd.com/search/search_results/default.aspx?query=multiple+sclerosis
Health Talk Radio
http://www2.healthtalk.com/go/radio
AskDrZ@HealthTalk.com (Ask Health Questions)
http://www2.healthtalk.com/ (Dr. Z's Audios/Videos)
Daily Strength Q & A
http://www.dailystrength.org/support/Grain_Nervous_System/Multiple_Sclerosis_MS
MS Sites from A-Z http://search.dmoz.org/cgi-bin/search?search=multiple%20sclerosis&all=no&cat=Health/Conditions_andDiseases/Neurological_Disorders/D
http://search.aol.com/aolcom/search?query=multiple%20sclerosis
http://ms.about.com/cs/nextsteps/a/joingroup.htm
United Spinal Org.
| Membership in the United Spinal Association is free and open to all individuals who have a spinal cord injury or disorder or who have Multiple Sclerosis or the other diseases listed below and you will also receive their great Action Magazines Free. |
- Spinal Cord Injuries
- Spina Bifida
- Diastematomyelia
- Tethered spinal cord syndrome
|
- Multiple Sclerosis
- Amyotrophic Lateral Sclerosis
- Poliomyelitis
- Syringomyelia
| http://www.unitedspinal.org/join-united-spinal-association/
Timely, lively, and informative articles and editorials on life with a disability.. Action Online offers articles ranging from lifestyles to research. Get in on the Action! Click here to read it.
www.abletotravel.org
Offered through United Spinal Association, this travel agency’s staff has dealt with a variety of accessibility issues that travelers with disabilities encounter, including accessible transportation to and from the airport, stowage of wheelchairs or other mobility equipment on board an aircraft, accessible hotel accommodations, and access to medical equipment.
More Topics
Alternative Medicine
http://www.msfocus.org/info_symptoms_alt.php MSF
http://www.glyco-facts.com/ms.html
http://www.ms-cam.org/index.php3/
http://www.healingwell.com/ms/
http://ww.organichope.com/english/multiplesclerosis.htm
http://tsangenterprise.com/news77.htm (See examples below)
Take 5 grams of soy lecithin granules daily (store this in the refrigerator and sealed tightly to avoid exposure to oxygen. Lecithin destabilizes with oxygen). Lecithin works with EFA's and other nutrients to produce myelin. (One side effect of lecithin is elevated blood sugars). Lecithin works with EFA's and other nutrients to produce myelin.
Several studies have shown that linoleic acid, in a dose of 17-23 grams, may reduce the severity and length of MS flares and may decrease disability as well.
www.telusplanet.net/public/dgarneau/health4f.htm
Autopsies show that multiple sclerosis patients have significantly less lecithin in the brain, spine and myelin sheath than normal persons. (One side effect of lecithin is elevated blood sugars)
For more experiences on Lecithin see:
http://dailystrength.org/c/Multiple_Sclerosis_MS/forum/595277-vitamin-lecithin
Mangosteen - With the power of the antioxidant-packed mangosteen and a whole-food blend of 12 fruits and 12 vegetables, these vitamins take it to a whole new level. Learn more... - Contact: Valerie Hazelden, Independent Xango Distributor at
Dr.Iqlia@yahoo.com Acupuncture, Homeopathy, Herbology - (954) 415-8620 located in Ocala
Prescription Assistance
Drug Discount Card for Marion County, FL Residents Only
Click here: Florida Discount Drug Card
Free at Most Pharmacies and Freedom Plublic Library (can be used with or without insurance) (additional savings if 3 month supply ordered) Can also be used while traveling
http://www.rarediseases.org/programs/medication NORD (May help with donut hole too)
http://www.needymeds.com (apps. for Drug Companies)
Medicaid
| Area 3B |
Citrus, Hernando, Lake, Marion, and Sumter Counties (352) 732-1349 Toll Free 1-877-724-2358 |
Qualified Disorders for Automatic Soc. Sec. Disability Approval Click here: Appendix 1 to Subpart P
FL Toll Permit Program
http://www.dot.state.fl.us/ctd/tollpermit/tollpermitprogram.htm
DISABLED RESIDENT HUNTING/FISHING LICENSE APPLICATION
In order to receive a no-cost Resident Disabled Person's Hunting and Fishing License applicants must provide proof of being totally and permanently disabled. Not all disabled persons will meet the criteria to receive the no-cost license. The license is not a disability accommodation but an economic accommodation for the segment of the disabled population who typically can least afford to pay for the license.
http://myfwc.com/ada/
http://myfwc.com/ada/disability_application-3.pdf Application
Happiness Site
http://www.reinventingmyself.com/happiness.html
MS Symptoms
http://www.themcfox.com/multiple-sclerosis/ms-symptoms/bladder.htm
Caregivers
http://www.msmeans.ca/caregivers.html
Multiple Sclerosis International Federation http://www.msif.org/en/
MS Trust in UK
http://www.mstrust.org.uk/default.jsp
Another Person's MS Journey
www.klearview.co.uk
Kristie's MS Video - Anyone with MS Should Relate
http://www.youtube.com/watch?v=6oraM8IF2Gc&feature=related
Breaking News
http://www.nationalmssociety.org/Breaking%20News.asp NMSS
Vitamin B3 Protects Brain Cells - Even in Late-State Multiple Sclerosis
http://aolsvc.health.webmd.aol.com/content/article/127/116752.htm
Fingolimod Oral MS Pill Phase III - Clinical Trials Underway
http://www.nationalmssociety.org/Breaking%20News.asp
Fingolimod 3-Year Results Show Continued Low Relapse and Disease Activity in MS
http://www.medscape.com/viewarticle/573504?src=mp&spon=26&uac=51010PN
Good News for Oral MS Drug Fingolimod
70% of Multiple Sclerosis Patients Are Relapse-Free After 3 Years on Fingolimod
http://www.webmd.com/multiple-sclerosis/news/20080416/good-news-for-oral-ms-drug-fingolimod?ecd=wnl_mls_042508
Fampridine Phase III - Improves Walking Speed and Leg Strength in MS
http://www.nationalmssociety.org/Breaking%20News.asp
Cladribine Oral MS Pill Phase III - FDA Agrees to Fast Review for Pill Being Tested for MS
Company Still Recruiting for Clinical Trial
http://biz.yahoo.com/prnews?060921/ukw023.html?.v=24
Cognition and Vegetables
http://www.medscape.com/viewarticle/546472?src=mp
Fibromyalgia
http://www.fibromyalgiadiaries.com/copingwithautoimmunity.htm
Neuromuscular Massage
www.neuromuscularmassages.com
Walking Assist Device with Stride Management System Prototype by Honda (can even help go up stairs)
http://corporate.honda.com/innovation/walk-assist/?ef_id=1097:3:s_0cd4a91a92cecf5661eea5b9c5f7af9c_3922927246:D-X4wEo-JyYAACYskF4AAAAD:20090505202413
http://m.youtube.com/watch?v=mvrK2HGhV-g&client=mv-sprint-us&gl=US&hl=en
Walkaide Reimbursement!! - NEW - We do have limited reimbursement with the Walkaide now. It is worth the visit to see if anyone that is a walkaide candidate be properly screened. If the device can help them walk, we can submit and see if it gets approved. Dr. Ulysses Singleton, DPT, Rehabilitation Specialist, Innovative Neurotronics, Inc., (407) 376-3353 cell, (512) 721-1961 fax
Home Incare Program - In Home meals, errands, ride to Dr's appts., etc. - most $16/hr - minimum 4 hrs. if once/week 3 hrs. if more than once a week. Can also do overnights. www.Homeincare.com - Jim Samuelson (352) 622-6447
Florida Palliative Home Care - Christine Spicochi, LPN Cell (352) 266-9073, Office (352) 873-0475, Fax (352) 291-5135, Home (352) 694-9430 (Talked about Hyperbaric Chamber/Glyco Nutrients/Home Device for B.P. readings, Blood sugar readings, Taking Pills, etc. covered by Medicare and most Insurance.
Yoga & Laughter - Diane Howe (813) 935-7538 howed.ha@verizon.net
The Villages Wellness Center - Sharon McClurg, Certified Yoga Instructor (352) 753-6910, Fax (352) 753-4041 - 1400 US Highway 441N, Suite 810, The Villages, FL 32159
Marion Therapeutic Riding Association (MTRA) is a premier accredited therapeutic horseback and carriage riding organization for individuals of all ages challenged by physical, mental or emotional disabilities.
www.mtraocala.org
Handicapped Recreation Adaptive Equipment
http://www.determined2heal.org/activities-recreation.htm
ASA Adaptive Skiing
New Dimensions Scholarship Program
ASA has established a scholarship program with the objective of increasing support for out-of-state, first-time skiers and snowboarders. In turn, these new participants will help develop new relationships with various recreational therapists, service clubs, support groups, and disability organizations to ensure even more participation in our program. ASA believes this will enhance the lives of an increasing number of people with disabilities by offering a new area of self-fulfillment. The statements of the overwhelming majority of past scholarship recipients have convinced us that the testimonial of just one person whose life has been changed by this experience can open the door for many others
www.asadurango.com/content/view/30/44/
Website for Gathering MS Symptom Info and Exchanging Information and Support
Goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you're interested in working together to achieve our goals.
www.Patientslikeme.com
Stu's Views and MS Related News
http://www.gloopler.com/msviewsandrelatednews/
Congressman Clifford Stearns - Working for Florida's Sixth District since 1989 Has local office in Ocala and is an MS Advocate (can sometimes help with Social Security Disability Turndowns (must be after turn-down and before petition to go in front of a judge). Also issues with transportation, or other issues relating to disabilities.
115 S.E. 25th Ave. Ocala, FL 34471 Phone 352-351-8777
http://www.house.gov/stearns/Welcome.html
Elder Law Attorney (Living Wills, Wills, Durable Power of Attorney, Estate Planning, etc.) Was at our Feb 2009 Meeting.
Colleen M. Duris Florida Bar, Board Certified Elder Law Attorney 500 NE 8th Avenue Ocala, FL 34470 (352) 732-7020 fax (352) 867-5111 cmduris@yahoo.com
Visiting Angels - Senior Home Care - America's Premier Non-Medical Senior Home Care Provider! in Ocala, FL and surrounding areas John Spang 953 NE Osceola Avenue Ocala FL 34470 Servicing Marion County 1-800-365-4189 www.visitingangels.com
Popular Ocala Neurologists:
Dr. Jose' Gaudier 1805 SE 16th Ave Bldg 1202 Ocala, FL 34471
(352) 732-8630
Dr. William Gaya 801 SW 1st Ave. Ocala, FL 34471 (352) 732-7233
Dr. Jeffrey Borkoski (Also has office in Gainesville)
3304 SW 34th Circle
Ocala, FL 34474
(352) 291-0210
Open MRI and Sleep Center Dr. Kim FL Neurological Center 2237 19th Ave. Rd. Ocala, Fl 34471 (352) 867-9877 www.flneurologyocala.medem.comNeuro-Opthamologist Dr. Latif Hamed 3230 SW 33rd Rd. Ocala, FL 34474 (352) 237-0090 Neuro-Surgeons: Dr. Antonio Disclafani or Dr. Barry Kaplan 1901 SE 18th Ave. Ocala, FL 34471 (352) 622-3360
Chiropractor:
Fakhoury Chiropractic Clinic 1009 SW 17th St. Ocala, FL 34474 (352) 351-3413
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