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Judy Devlin

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Posts posted by Judy Devlin

  1. Hi Shelley,


    I bet Gene would benefit from this program also.


    Here's a link and a summary about Palliative care:


    What is Palliative Care

    Definition Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on improving overall quality of life for patients and families facing serious illness. Emphasis is placed on intensive communication, pain and symptom management, and coordination of care.


    Palliative care is provided by a team of professionals working together with the primary doctor. It is appropriate at any point in a serious illness and can be provided at the same time as treatment that is meant to cure.


    Ensures quality of life

    Palliative care is not a one-size-fits-all approach. Patients have a range of diseases and respond differently to treatment options. A key benefit of palliative care is that it looks at the patient as a whole in order to meet the individual needs of each person and family.



    Palliative care relieves symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps patients gain the strength to carry on with daily life. It improves their ability to tolerate medical treatments. And it helps them better understand their choices for care.


    Palliative care benefits both patients and their families. Along with symptom management, communication and support for the family are key. The team helps patients and families make medical decisions and choose treatments that are in line with their goals.


    Different from hospice

    Palliative care is not limited to hospice care. Palliative care may be provided at any time during a person`s illness, even from the time of diagnosis. And, it can take place at the same time as curative treatment.


    Hospice always provides palliative care. However, hospice is focused on terminally ill patients—people who no longer seek treatments to cure them.


    Provided by a team

    Usually a team of experts, including palliative care doctors, nurses and social workers, provides this type of care. Chaplains, massage therapists, pharmacists, nutritionists and others might also be part of the team. Typically, you get non-hospice palliative care in the hospital through a palliative care program. Working in partnership with your primary doctor, the palliative care team provides:


    •Close, clear communication

    •Expert management of pain and other symptoms

    •Help navigating the healthcare system

    •Guidance with difficult and complex treatment choices

    •Emotional and spiritual support for you and your family

  2. Hi Jeannie


    Yes yes to this "An invisible benefit of these programs (and hospice) is the relief from responsibility they give our families and friends" And for myself living with two 80 year old parents, having a regular nurse etc., walking into the house on a regular basis also is like help for my parents. An extra pair of eyes so to speak. Many of the OT's tips I pass on to my parents so its such a big win for all of us.


    I was 'retired on disability' before both my parents retired and have felt that I kind of showed them how to be retired happily etc., routines, hobbies, living in the moment etc and by my having home care it will 'teach' them that its okay to have help, they can stay in their home and feel okay about strangers coming into their space.. So you might say I also had an ulteria motive..;-)as I know how limited I am strengthwise to really be of much help to them.



  3. Hi all, Long time since I've posted, but I just have to share this wonderful program that I asked my new primary care physician about- Palliative Care. I have had CREST since 1991, although my symptoms started twenty years before that. Like many here I've seen dozens of doctors, specialists etc., only to be given more tests more drugs all while knowing there is no cure. Well after a stint at Duke Medical University with the best vascular surgeon there to help heal or amputate a finger with possible by-pass, which was not doable, I was told there was nothing more they could do for me unless I wanted a stem cell transplant. I said no to that. I felt like I was given another death sentence and wondered what is my next step. I moved back to my home state and in with my elderly folks, figuring I could at least feel useful helping them out as I was able.


    I did some research while looking for a new primary care physician and came across this Palliative Care program which I had never heard of- basically its a maintain/sustain program for chronic illness, cancer, elderly patients and one can ask for it at any stage of one's disease. In Concord, NH, it's considered a pre-hospice program, which made me pause a moment. But as I thought about finding new doctors all the tests the new doctors would order, offers of new (mostly un-trusted drugs in my opinion) the old or 'normal' way to deal with SD didn't make anymore sense to me.


    The Palliative Care involves visiting nurses, dieticians, occupational therapists, social workers and 24 hour on call help. I have lost so much weight, under 100 pounds and just had no appetite or after eating a couple of bites I'd feel full. So I am on a medicine that stimulates the appetite and I've put on a few pounds in two weeks. The dietician loves helping people who need to eat cause if we can, WE CAN EAT ANYTHING WE WANT!! (I'm a butter freak:-) Yippee. The nurses help with pain control issues and prescriptions, vital sign monitoring, wound dressing etc. The Occupational therapy has given me all kinds of tools to help me adjust to the loss of my right hand and weakness in general- all my muscles have atrophied because of weight loss etc. And the nurses are wonderful and basically only do what you want or need them to do and they come to you (No waiting in waiting rooms.


    They will come as often or as seldom as you want. One can opt out and rejoin anytime and you no longer need a written referral from a doctor to go into hospice. (At least here in NH)


    Medicare pays for this program. It's awesome. I am taking care of myself my way, my timing, my needs and these people are so nice, kind unjudgemental and such a welcomed relief from the regular medical community.


    Research yourself in your area and see if this might work for you. Mostly I recommend this program for long term SD patients.

    It works for me and I love it-sustain/maintain. It has been a blessing!


    Take Care,


    Judy Devlin

  4. Did you know the sclero.org site has a following all around the world? That's because we have content in 23 languages and many stories in foreign languages. Here is Emy's Spanish story, which was translated into English by ISN Translator, Alba Leon.


    Emy: Localized Scleroderma

    Hello! My name is Emy and I am twenty-six years old. When I was nine I noticed a small lesion, the size and shape of a coin in the temporal side of my skull. As time went by I began losing the hair in the area. I thought I was going bald, so I decided not to push it further, nor ask my parents...


    (Español/Spanish) Emy: Esclerodermia Localizada

    Hola! Mi nombre es Emy y tengo 26 años. A los 9 noté una pequeña lesión en forma de moneda en la zona temporal de mi cráneo y con el tiempo había perdido todo el cabello en el área. Pensé que tenía alopecia por lo que decidí no indagar más ni comentarle a mis padres...

  5. Did you know we have a collection of over 1,000 patient and caregiver stories on our main site?


    Many of them are submitted in foreign languages, and then we translate them into English. This story by Maria D was translated from Spanish to English by ISN Translator, Alba Leon.


    Maria D: Localized Scleroderma My name is María. I am the mother of a seven year old boy who was diagnosed with this illness. When the dermatologist gave me the diagnosis I had no reaction, since I didn't know what it was really about...


    Maria D: Esclerodermia Localizada Mi nombre es María,. Cuando el dermatólogo me dio el diagnóstico no tuve ninguna reacción, ya que no sabía de qué se trataba. Fue hasta hace tres días que comencé a investigar y me di cuenta de la gravedad...

  6. Have you considered posting your patient or caregiver story on the sclero.org site? Read our stories and if you feel inspired, submit your story as well. Tatita's story has just been posted in Spanish and English on our main site.


    Tatita: Morphea (Puerto Rico)

    I am thirty-seven years old. A year ago I had gallbladder surgery, and after the procedure I began to experience back and arm pain, and sometimes strong headaches.I am thirty-seven years old. A year ago I had gallbladder surgery, and after the procedure I began to experience back and arm pain, and sometimes strong headaches...


    Tatita: Morfea (Puerto Rico)

    Tengo 37 años. Hace un año me operaron de la vesícula, y después de la operación comencé a tener dolor en la espalda y los brazos, a veces también dolor de cabeza fuerte. Después de dos semanas me empezó a salir una mancha, como si me hubiesen golpeado en la espalda, detrás del brazo, luego siguieron los muslos...

  7. We have stories in many languages on our main sclero.org site! Cris' story was in Spanish and we also translated it into English.


    Cris: Morphea Scleroderma

    Hello everyone, my name is Cris, I am twenty-two years old and I have suffered from this illness for three years, since I got pregnant. It all started with a white spot in my abdomen. My baby girl was born and the doctors said it was a normal spot since it did not hurt or anything...(Read more)


    Español/Spanish: Cris: Esclerodermia Morfea

    Mi nombre es Cristina, tengo 22 años y padezco esta enfermedad desde hace tres, cuando quedé embarazada. Al principio me salió una mancha blanca en el abdomen...(Read more)

  8. We have over a thousand patient and caregiver stories on our main site. This one is from a mother, whose little girl has linear scleroderma.


    Debbie B: Mother of Linear Scleroderma Patient

    Hi, my name is Debbie and my five year old daughter, Emily, was diagnosed with Linear Morphea scleroderma in July 2009. Emily started with a purple bruise-like mark on her tummy and inner leg, only on the right hand side. We thought nothing of it at first and thought it was a birthmark... (Read more)

  9. We have a new story posted on the main Sclero.org site. Browse our collection of over 1,000 patient and caregiver stories, about all types of scleroderma and related illnesses!


    Kelly: CREST (Limited Cutaneous Systemic Sclerosis)


    My name is Kelly, and I am a fifty-three year old web developer and mother of two daughters. Two months ago, I was diagnosed with CREST (limited cutaneous systemic sclerosis - lcSSc). I feel lucky. As I write this, my only obvious symptom is a finger which is unusually sensitive to cold due to the fibrosis. I have been diagnosed early. At least, I think I have been diagnosed early. I have had thickened fingers and Raynaud's since I was a teenager. After I reached menopause in 2008, the Raynaud's, which had been a once or twice a year phenomenon, suddenly began to appear once or twice a week...

  10. We have over a thousand personal stories posted on our main sclero.org website. This new story by Gioia is presented in both English and Italian.


    (English) Gioia: Systemic Progressive Sclerosis

    My story begins in 1975, with Raynaud's syndrome. Scleroderma, however, was only diagnosed in 1988, when they told me I should not be scared, that it was not a major thing. Later I realized that it was not the case...


    (Italian) Gioia: Sclerosi Sistemica Progressiva

    La mia storia é cominciata nel lontano 1975, con il fenómeno di Raynaud. La sclerodermia però me l'hanno diagnosticata nel 1988, dicendomi che non mi dovevo spaventare, che non era nulla di grave...

  11. Skye: Localized Juvenile Scleroderma

    My story begins with me being in fifth grade, out on Father's Day with my dad and sister. It was in June on Father's Day that we went to my old school and were flying a remote control airplane. I remember the plane having flown over a fence and my dad asking me to go get it. The first time I walked around the fence but then coming back I stabbed my foot and got a stick stuck in my foot...

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