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Brenda Rehabilatation Help

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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.

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Donations 

  • Tami Carlow
    • $20 
    • 7 yrs
  • MS Foundation Home Care Grant
    • $1,080 (Offline)
    • 7 yrs
  • Anonymous
    • $46 (Offline)
    • 7 yrs
  • Multiple Sclerosis Foundation Dental Grant
    • $500 (Offline)
    • 7 yrs
  • Anonymous
    • $20 (Offline)
    • 7 yrs
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Organizer and beneficiary

Niki ORourke
Organizer
Rochester, NH
Brenda Eckels Burrows
Beneficiary

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