Brenda Rehabilatation Help
Brenda is a Freelance Writer and former non-profit executive who is seriously disabled with more than a few illnesses which include/but are not limited to - Multiple Sclerosis, Fibromyalgia, osteoarthritis, gastroparesis and PTSD from domestic violence, each having too many symptoms to list. Despite being disabled since the late '90's, she has never let her disabilities stop her from owning businesses, raising and foster parenting kids, traveling, and ministering to people in need as an Ecumenical Lay Franciscan.
She was retired due to disability in 2006, but by 2015 the check would not cover the month, so she became one of the many Social Security Ticket To Work holders who try to juggle staying alive with working. In her case, sometimes from the hospital-style bed in her room.
In August 2016, she suffered a serious setback that by the middle of October left her completely wheelchair dependent, under 100 lbs, and in danger of being placed in a nursing home against her wishes.
Whereas in the past she was able to access sufficient services for the disabled, by 2016 the state of New Hampshire had slashed services and was in the midst of a horrific shortage of home care workers. Now, she is fighting again to recover and return to work, but with less than half the services and coverage that under Federal Medicare and Medicaid laws she is qualified for.
Niki has been as close as a sister to Brenda for over 30 years, and I have been her friend long enough to know that given the right supports, Brenda can do amazing things. This woman literally has beaten death and so many obstacles in her adult life, but now she needs help to replace what has been lost in our country's social safety net and rehabilitation programs.
Please help us to help Brenda live the fullest life possible, return to work, and living independently with the home care supports she needs.
Thank you! Jaden & Niki
Some of the most urgent needs are (updated 7/4/17):
1. $1,100 Dental CoPay For Dentures,
To manage the digestive issues she has, Brenda needs to eat 6 times a day because of MS-related damage to her digestive system. This is very difficult without teeth and increases the amount of time required to fine dice her food. Having teeth for her smile would also be nice and allow her to have speech therapy to return to public speaking. The actual cost was much more, over $4,000, but Thanks to Donors like you and two grants, her balance is now down to $1,100.
The teeth are ready and waiting! (Read her Denture Adventure Series Here) Brenda is having upwards of 6 hours of PT a week, and dealing with a right shoulder rotator cuff problem, so there is no dentist appointment until the end of July at least, but first, we need to raise this last $1,100!
2. 90 bottles/ month Special Formula Ensure
In New Hampshire, unless a person is not allowed to eat ANY table food, coverage for Ensure has been discontinued even if deemed medically necessary by a nutritionist or gastroenterologist. Nutritional Supplement Drinks are now just that; supplements to help reduce or increase one's weight and prevent dehydration in persons with digestive disorders.
Thanks to Donors like you, we have been able to supply Brenda with at least one of the three Ensures a day she needs.
The specific type of Ensure she has a nutritionist order for is listed in the Wish List section. She can also use gift cards to Market Basket, as her food costs, like everyone's, continue to spiral higher each month. A soy hamburger now costs a dollar each as does a small soy yogurt. (Brenda, for example, is supposed to have a serving of soy yogurt once a day.) Brenda gets $16 a month in food stamps, which she saves up to buy bulk rice, sugar, flour, beans, and oil every six months.
This trip she had to forgo buying her usual 25-pound bag of flour and the bags of dry beans because prices had gone up so much. Her brother, however, found a food supply store that sells dented commercial size cans so she now has chickpeas for hummus and the hemp seeds.
Often her food must be cooked literally from scratch - her Favorite Fried Hemp Balls, about the size of Milk Dud Candies, start with using a bullet type grinder to grind raw seeds, and then are hand rolled and fried in bulk for quick easy addition to noodles, soups, or as snacks. Some GoFundMe money has been used to pay for Ensures and offline donations have paid for two yard sale bullet blenders for grinding/blending.
3. $415 Copays For Medical Specialists for February and March. Brenda has full Medicare coverage, Medicaid, and Medicaid CFI-CI, but NH's payments are so low many specialists do not take Medicaid. Medicare copay leaves 20% of the bill for the client to pay. These specialists, however, are critical for a person with multiple disabilities. We have used some GoFundMe money to start paying these copays as we can.
4. Finish Paying off Copay for Surgery for Medical Comfort Dog. Booker, who also performs Hard Of Hearing tasks. Thanks to you Donors, the surgery has been done and now Booker is a much happier healthier dog. However, now we need to raise $375 to pay the veterinarian at $25 a month.
6. Medical Equipment for Vocational Needs. The top priority is a new wheelchair, which her Health Team is already working on.
On June 30th we met with the Vendor Rep and the Physical Therapist and started to look at different options for the type of chair that will be best for Brenda. We have been told that the total cost of the chair could be upwards of $17,000, and we do not know yet how much is going to be covered by insurance. Mid July, we go to the Vendor's Store to continue this imprtant work.
Other items of Medical Equipment are listed in the Wish List section.
$585 a month for Home Care Not Covered By State.
Brenda's need analysis has changed since we started this Go Fund Me Campaign, but she as also been approved for a special program for wheelchair dependent consumers and this has brought down the monthly amount she needs to pay either by grants, donations or out of her SSDI check.
Together with all three funding sources, she is now approved for 74 hours a week, in part because the current wheelchair now has a broken brake in addition to a bent axle, and it is more dangerous for Brenda to attempt transfers alone...BUT the majority of those hours are unfilled due to the shortage of home care workers in the State of NH.
It is even more critical for Brenda to get reliable staff that can be expected to remain working for her for a year because some of Brenda's care is very complex, and there is a certain amount of time each new hire has to learn how to meet her needs.
All of her open hours are via Granite State Independent Living (Visit GSIL.org to download an application and then scan as pdf and email to us!)
She has openings now and in September for both Personal Care Attendants and Personal Care Support Professionals in part because two of her care providers are heading to college in September and one has left for a higher paying job outside of health care.
Needs in the coming year include:
7. Second Hearing Aid. Last year, the state cut funding for hearing aids and only cover one. For a person with a neurological disease who needs dual hearing aids, trying to wear just one causes serious vertigo and balance problems. In Brenda's case, these symptoms are severe enough to induce nausea, loss of appetite, and vomiting, which can lead to potentially fatal weight loss. Currently, Brenda uses bulky, inefficient hearing amplifiers on loan from a UNH Disability Program. These have improved her ability on some days to hear a little better, but on other days they aggravate the Tinnitus (Ringing, Buzzing in ears) she has as a result of the Multiple Sclerosis.
8. Compounding Fees for Medications. Brenda has increasing difficulty with digesting pills and getting medications taken by pill to absorb consistently. Converting just one medication, Baclofen (for MS related spasms and contractures), to a liquid form is $90 a month. Brenda has several such medications still to be converted to liquid, patch or topical formulas.
9. Work Console for the new wheelchair. More on this item in a future post.
We are waiting on her new wheelchair, that is the next project for this campaign. We have a company lined up that can create a tabletop for the wheelchair that can hold her phone, a computer, and her video equipment so that she can start writing for the local newspaper and blogging again.
The tabletop for the wheelchair will be custom made to hold all her equipment and a platform will be built to sit underneath the wheelchair that will be able to hold the battery that powers her equipment while she is working.
We still don't have the estimate for the wheelchair or the tabletop yet, however, Brenda still really needs support for the ENSURE that she still needs at least once a day as well as the VITAMINS and PROBIOTIC that she needs to take.
The Flintstones gave anonymously so that we could thank them publicly. If not for them, Brenda still would be without teeth. Even though applications for other grants were sent out, none of them panned out.
Please, even if all you can afford is a few dollars, it makes a big difference for Brenda. Thank you !!!!!
Niki & Jaden
We are now able to get the dentures thanks to a large donation from the Flintstones. And while yes, that was a very large donation, we couldn't have gotten here without everyone support. I am feeling very blessed by the generosity that has been extended towards Brenda. Thank you all !!!
The next adventure awaits, getting a new wheelchair to replace the broken one she is using. We will be seeing the Black Bear Medical representative next week to try and find the correct your of chair that Brenda needs.
The need for Ensure Enlive continues as well as other medical supplies for her.
As for the rest of what Brenda has been doing, the PT has been getting her arms stronger, but she is still not eating enough calories and protein to maintain her body condition. The Vestibular Therapy has helped her feel a little less out of balance but they cannot correct what is wrong. The Speech Therapy is going to start as soon as Bends can make an appointment with the dentist to get her choppers :) And last but not least, she has to start therapy to improve her core strength which will help her be able to sit for longer periods of time.
One step at a time. Thank you all and if you can, no donation is ever too small and donations can always be made anonymously. Thank you !!!
There are now almost 200 supporters of this campaign, and every day we see more shares !! Thank YOU !!
From the biggest donation to the smallest Share, Like, or Tweet; we are making progress in helping Brenda get her new teeth, a new wheelchair (hers is VERY broken), medical care payments, home care, and vocational support items so that she can stay living in an apartment (instead of being stuck in a nursing home), and getting her back to doing work that she loves. Thank You EVERYONE !!!!!
The balance of the money needed for her new teeth was donated anonymously and is being transferred to pay the dentist ASAP and her appointment to get the actual dentures in her mouth is getting scheduled soon !!
The therapy for her inner ear dizziness is done and because the teeth are now on their way, speech therapy will soon be starting.
Right now, however, the current crisis is that Brenda is just about out of the Ensure Enlive. The Ensure is critical for her in order to consume the needed calories and protein that she burns with all of her therapies and daily activities.
Combining her time "up" in the old chair plus up to 7 hours a week of PT exercises, she is gaining muscle. Yet she still has days where she struggles to eat even 1200 calories when she needs to have 2250. Her gaining of muscle is coming at a steep price on her body if she can't get the needed calories and protein.
Being able to have the Ensure 3x a day greatly help her hit her calorie needs.
Brenda gets $16 a month food stamps and has about $50 a month after paying her bills to buy food for her and Booker, her medical comfort animal. He is also her Hard of Hearing (HOH) dog. He lets her know if the phone is ringing, someone is knocking at the door, or an alarm is going off.
We are so grateful for the people, including her daughter Katrina, parents Joe and Donna, and brother Jim who have been able to send cases of Ensure Enlive or Gift Cards to Market Basket !!
Brenda goes thru 4 liters of soy milk a month and buys the cheapest one available at Dollar Tree. Gift Cards to this store can help her get soy milk, baby aspirin, and toilet paper. The aspirin is important for stroke prevention and for the angina (cause unknown) that Brenda sometimes has.
We are still grinding hemp seeds to add protein to smoothies, soy meatloaf, and just about anything else we can think of.
This month we have accumulated all the ingredients to make hummus (yum !!!), thanks to brother Mike finding a store with commercial size cans of chick peas.
With all of us together, Brenda is working as hard as she can on rehab and she is succeeding !! Let's help her keep it up !! Hopefully, the next update will be Brenda WITH her teeth.
After that comes the wheelchair. She has had one appointment with a vendor and she has decisions to make about what type of wheelchair she will get. Decisions, Decisions, Decisions !!!!!
Well, That is all for Today.
This has been a tremendous month with all the gains that Brenda has made.
THANK YOU EVERYONE !!!!!!
Please, keep on helping us so Brenda can start her speech therapy, continue her Physical therapy, video production, and other social media classes, and get back to work so she can continue to live independently! No donation is too small - her Tegaderm patch covers, for example, are 75 cents each, so even a dollar goes to a medical expense!
We have been busy trying to get either a bake sale or similar type table event together for the end of July to help raise the rest of the denture money, so anyone in the Rochester, NH area interested in helping us out, please email us today!
It's only 3pm, and I am #exhausted. I am so incredibly grateful though to the people who have already donated, offered help, prayed, and sent Wish List items on this fundraiser my sister and friend started. They have raised $190 already! Today, more ensure arrived...just in time as I was down to 5 bottles out of the 90 a month I need! Thank you, everyone, for the prayers and donations, ... and especially for hitting that SHARE button! I am doing pretty well today even though I think I am out of spoons now. My aide got me up, dressed, and so on. I got my upper body PT exercises done and did some paperwork with Niki. I also had: (1) a smashed up PopTart, with water (2) a bowl of cinnamon sugar oatmeal, with more water (3) a 250cal ensure, ....and now eating (4) broken up Pita chips from a friend with a spoon and lots of liquid. - kool aid (and yes, I chin tucked!) *grin* Every day, 6 meals, 2-3 hours apart & at least 22 ounces of water... #Gastroparesis and #Dysphagia suck as much as #MultipleSclerosis does, but... one day at a time, right? This, by the way, is my Public Facebook, for fans, followers, friends, and where once I am doing well enough to be writing more, my blog entries get shared. My blog, obviously, has been pretty stagnant since I had the set back in August, but there is older stuff out there, and I am hoping that with the two new aides hired and some possibles to interview, the team will have me "staffed up" better so I can save some of my spoons to start writing again. I know I have to be patient. I am a long way yet from being able to hop in a wheelchair van, go to a Building Commission meeting or City event and do freelance reporting, or to be able to properly run my little online community for interdenominational Catholic dialogue, information, and fun. One step at a time. Again, thanks, everyone... Take care, Brenda The Writer
Step 1: Grasp locked wheelchair tires. Step 2: Extend both arms equally, lifting body at least 2" off seat of wheelchair while holding legs and knees in sitting position. Step 3: Remain up for 3 deep breaths, in through nose, out through mouth, filling lungs. Step 4: Lower both arms at equal rate until seated. Step 5: Repeat 5 times. #NailedIt. (Needed a 20 minute cat nap, but , you know what I mean?) First time since November... 20th? 3 Months to regain left side control, strength on both sides. Well, earlier today at least. Tomorrow? Who knows. One Day At A Time. We may each be battling our respective calamities and losses but our God is an Awesome God, and is with us every step. Thank you to everyone who has donated cash, Ensure, and offered to help. Aide just brought me from bathroom to bedroom, and said "Since you are so excited about it, why not tell the people while I fix these spacers?" I love it when they let me "cheat" a little on my schedule! Back to bed... Brenda
I'm a nurse's aide with decades of experience. I would be honored to care for her if she needs xtra help.