An MS Advocate for Those Who Really Need One

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by Ed Tobias |

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MS personal advocate program

MS_Wire_Ed_Tobias

You probably haven’t heard of Edward Dowd. I hadn’t until I read about him in the latest issue of the National MS Society’s magazine, Momentum.

I learned that Ed is a big-time landlord. The company he founded operates about a thousand rental apartments in the San Francisco area. He’s a self-self made guy who used to put in 12-hour days, 7 days a week. But then in 1993, at age 47, Ed was diagnosed with multiple sclerosis. He says it’s one of the best things that ever happened to him.

That’s because MS forced Ed Dowd to slow down and to re-focus his life.  In the magazine article Dowd says “rather than running my business, I started looking at what (else) I could do — not focusing on what I couldn’t do.” The “what else” turned out to be helping improve people’s lives through philanthropy; donating to organizations that will use the money to make a meaningful impact on people.

The Dowd Personal Advocate Program

One of those organizations is the National MS Society which, earlier this year, received a multi-year donation of $3 million. The money will fund the Edward M. Dowd Personal Advocate Program, a program that will focus on helping MS patients whose disability is severe and who need help to increase their independence and improve their quality of life.

The program hopes to accomplish this by providing patients with their own patient advocate; a case manager who will help them with things such as accessing benefits, finding good housing and medical care, and achieving financial stability.

The Personal Advocate Program will focus on MS patients who have:

  • Multiple, urgent issues and significant MS-related symptoms and/or disability
  • Significant changes in physical or mental health, or cognition
  • Inability of family or caregiver(s) to provide care or cope
  • Isolation (including being homebound), living alone, or other health or safety risks
  • Lack of home care, adequate housing, or other vital services
  • Inability to identify needs, e.g., scattered assistance requests or signs of being overwhelmed
  • Imminent potential of admission to a long-term care facility

Candidates for the Personal Advocate Program will be identified when they contact an  MS Society Navigator, a professional at the MS Society who, by phone, online or even via “snail” mail, can be asked anything about MS.

I can think of at least one MS patient who reads my column and who has blogged about having trouble dealing with some of the problems listed above. If I were her, I’d pick up the phone and dial 1-800-344-4867, or email: [email protected], and see if the Dowd program might be able to offer her some help. Or maybe it can help you.

Says Ed Dowd in the Momentum article, “There is help out there, and you just have to know it’s there and access it.”

[You’re invited to follow my personal blog at www.themswire.com]

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

 

Comments

Vicky Adams avatar

Vicky Adams

I have a three wheel scooter. I have my second scooter, all I purchased myself. This last scooter keeps disconnecting and will not go, which leaves me in my recliner until my caretakers arrive, which can be 14 hours, then they have to manually push me. I can’t afford another or have it fixed, Medicaid refuses to get me another, saying they’re too dangerous, though I have used one for seven years. Could you convince them that I could use one? I could use a advocate, someone that understands this hideous disease that is not asked for, yet desperately try mentally to deal with.

Reply
Ed Tobias avatar

Ed Tobias

Hi Vicky,

I'm sorry for the delayed response. I'm sorry for the problems you're having. Here's what I wrote in my column about getting help:

Candidates for the Personal Advocate Program will be identified when they contact an  MS Society Navigator, a professional at the MS Society who, by phone, online or even via "snail" mail, can be asked anything about MS.

"I can think of at least one MS patient who reads my column and who has blogged about having trouble dealing with some of the problems listed above. If I were her, I'd pick up the phone and dial 1-800-344-4867, or email: [email protected], and see if the Dowd program might be able to offer her some help. Or maybe it can help you."

Why don't you call that number or use the email address, explain the problem to them, and see if they can help?

Ed

Reply
Laura Gomez avatar

Laura Gomez

I was diagnoised in August of 2017 my current neurologist is local, I'm on a daily medication, working still 5 days a week although I feel as if my supervisors are pushing me out and I need some gudiance.

Reply
Ed Tobias avatar

Ed Tobias

Hi Laura,

You probably want to contact a disability rights attorney. You might be able to find one that will work for free, or a low fee, via the Disability Rights Association: https://www.ndrn.org/

Ed

Reply
Gail avatar

Gail

I was diagnosed on June of 2014. I've try working until was not able to.I applied for disability that was an dead end. I was to reapply but I needs an advocate not a lawyer.

Reply
Ed Tobias avatar

Ed Tobias

Hi Gail,

I'm sorry to hear of the problems you're having. Have you tried contacting someone at your local MS society to see if they can help?

Reply

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