View allAll Photos Tagged multiplesclerosis!
So, a bit of prep was needed before my HSCT. I need a washout of my system of all DMDs (disease modifying drugs) 3 months prior.
I did a bit of more research.
The DMD I was taking, Gilenya by Novartis, came out in 2010 at $4000/month. It’s now $9000/month. You might qualify for a discount because having a debilitating, life long disease that has no cure is not enough. Price setting for drugs is a black hole. The biomedical engineer I spoke to said it takes about $.05 - $1 per pill to make Gilenya.
The average worker at Novartis makes $50k/yr.
Doctors there make about $250/yr.
The CEO, last year, made $11,437,500. That’s before perks.
And I was expected to make a decision on what drug to take within a couple of days based on the pamphlets I was given. Yet, my 8 months of research into HSCT was scoffed at.
What pissed me off the most was that I was not given a choice of this treatment. Even though it’s been around for 50 years and everything that was given to me was FDA approved. I suspect that since HSCT can’t be owned by a single big pharma company it was not FDA approved. Aka: no single owner to make $ off of it.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Norah O'Donnell, Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Anna Trone, Jean-Marie Fernandez, Maureen Curley. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
At the second Dartford MS Funday in 2003, the Red Wheelie scooter display team put on a routine based on St George and the Dragon. The dragon was pursued around the arena until caught and its tail removed.
Recently heard that the Red Wheelies have been revived in Canterbury to support the MS Therapy Centre there - watch Kent TV footage
Presentation of one of the cheques to the participating charities. A total of £832 was raised for Diabetes and Multiple Sclerosis charities.
Musician Lara Ewen (www.unstrungmusic.com) injects a 2-inch needle into her leg muscle once a week to treat her multiple sclerosis.
Norah O'Donnell and Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Norah O'Donnell, Carrie Marriott. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Norah O'Donnell and Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Day one hundred sixty-nine/365. You may hear people who have MS, or who live with them, refer to the A-B-C drugs.
My wife had been on Avonex, the "A drug," which involved a weekly injection deep into a muscle. Guessing that Avonex was lowering her white blood count, her neurologist switched her to the "C drug," Copaxone. That's a more shallow injection, done daily.
The notebook in the picture helps her to keep her shots organized. It includes a map of injection sites on her body; she needs to rotate them. Often, when a site is difficult for her to reach, or when she just doesn't have the gumption to give herself a shot, she'll ask me to handle the injection.
I live by my PDA. But, sometimes, I long for my old, paper day planner, with stickers, photos pasted in, and different colors of ink. There's something therapeutic about a real book!
Janice also has a PDA, but plans her MS treatments on paper. The makers of Copaxone supply her with a nifty day planner, complete with stickers.
Ginny Grenham, Norah O'Donnell. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Biting stonecrop , is found in meadows, sandy and rocky places.
For medicinal purposes harvested aerial part of the plant that are made poultices, infusions, decoction.
Biting stonecrop , can reap in May-July.
Biting stonecrop-Natural Treatments
Biting stonecrop preparations have important medicinal qualities, being antiepileptic antiscorbutic, antiperspirants, and even anti-ulcer agents.
This herb can help fight scurvy, a fever, certain skin diseases such as skin ulcers, mycosis, freckles, abscesses, wounds difficult to heal.
Biting stonecrop is indicated in the treatment of MS and hypertension.
Herb may be useful in skin cancer.
Biting stonecrop can be used in treating diseases as diverse as skin induration, gangrenous wounds, tumors.
In internal use, the plant is used as an infusion for treatment of diuresis and fever.
In external use is used as a decoction or infusion addition of bathroom and treating foot pain, arthritis and scurvy (lack of vitamin C).The plant or plant cuts, apply external therapies and fresh form, directly to the affected area. read more
Every day my caregiver, Jair (we called him J) kept me on a rigorous schedule for my meds. This photo does not include the daily injections (sometimes 2x a day) also administered by the nurses.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Bob has multiple sclerosis and has to use a scooter. He is not happy about this.
He has five children and an ex-wife.
Bob occasionally tries to convert me to Christianity, but not very hard.
I came up with a contest amongst my brothers and sisters to see who can wear orange the entire month of March 2019 to bring awareness to Multiple Sclerosis.
OK.... this here is rather an ironic remark.... ;-)
Truth is, I nearly have no power enough anymore to push myself in my wheelchair.
This means: an electric one must follow a.s.a.p.
My 'Golden Wheel Runner' here will then be something for use within houses only.
Please check out similar license plates by searching for "charity series" or clicking the link below.
Model:Abdul Aziz Al-Jaber <<in the left.
الاحتفال باليوم العالمي لمرض تصلب الأعصاب المتعدد_
27 مايو 2009
رابطة مرضى تصلب الأعصاب المتعدد القطرية
Norah O'Donnell and Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Day Three Hundred Forty-One/365. We've been dealing, first-hand, with multiple sclerosis since 1985. But, there is always something to learn!
We recommend this book. It's readable and authoritative . . .and, this one is in large print!
www.flickr.com/groups/pledgetokissgoodbye/
Palo, one of my very first contacts, one very beautiful lady, one extremely talented lady, one very strong lady. This one is for you, and for all MS sufferers, and the people going thru the journey with you, may there be a cure found.
David and Carrie Marriott, Jill Hodges, Kellie Romer, Kevin Chugg. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Norah O'Donnell and Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
40th Annual Race Against MS June 22, 2023/ Belmont Park/ 2150 Hempstead Turnpike National Multiple Sclerosis Society NYC - Southern New York Chapter
I mentioned a few days ago that I'd been interviewed by the local press. Here it is in today's South Wales Evening Post. (More in comments)
Anna Trone, Karen Donatelli, Maureen Curley, Stacey Lubar, Jean-Marie Fernandez, Amy Baier. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Emily Rouse. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Norah O'Donnell and Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
A few more shots from the walk to raise funds to fight Multiple Sclerosis. The M. S. Walk took place in multiple locations, yesterday. I attended the one in Hershey, PA.
Norah O'Donnell and Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
Pentax K-01 / Carl Zeiss Jena 2.8/50 Tessar lens
Three exposures in-camera; processed with Topaz Adjust and Aperture
Day Two hundred twenty-seven/365. She's into making bracelets and necklaces. There are many things that her tremoring and often painful hands can no longer do because of multiple sclerosis and a few other complications. But, she's discovered a craft and a passion, working with colored glass beads. She's taken a couple of classes, tried her skills, and gone back for a little coaching. The training has paid off!
Now that she's outfitted the family with her more experimental work, and learned to make her jewlery stronger and more interesting, she's even taken some orders for neck and wrist wear. This one is for Amy, one of our Flickr buddies.
It's been rewarding to combine fun with an activity that serves as occupational therapy.
P.S. Tomorrow is the first of the month. If you're a member of the "First of the Month Gas Price" group, please remember to post a photo of gas prices in your neck of the woods!
The true story of a later than expected and still unexpected diagnosis of multiple sclerosis, its treatment, and the changes it caused in a teacher's career and life.
Buy this book at www.amazon.com/Multiple-Sclerosis-Enigma-Finding-diagnosi...