174 posts in the category “Parkinson’s Disease”

What products help people live better with Parkinson’s disease? A room-by-room round-up

Posted February 21st, 2018 by

Over the years, PatientsLikeMe members living with Parkinson’s disease have discussed a lot of products and ideas for living better with PD. From kitchen knives and eating utensils to shoe horns and shoelaces, we’ve compiled a list of tools you’ve talked about for (almost) every room in the house and many different aspects of life. Check it out, and join the community to chime in with your own favorites.

In the kitchen

  • A “rocker knife,” also known as an “ulu” or a “mezzaluna” knife “works great for chopping/slicing veggies, fruits, cheeses, etc.” and a “large-blade pizza cutter is great for cutting pancakes/waffles very quickly,” one member says
  • With a food chopper, like those sold by The Pampered Chef, “I can chop onions, peppers, garlic in no time,” another member says
  • Others have mentioned weighted utensils and kitchen utensils specifically designed for people with PD
  • Multiple members have also discussed drinking cups with lids and straws (for both cold and hot drinks) to help prevent spills and gagging/choking

In the bathroom

  • Biotene toothpaste or mouthwash “helps with dry mouth caused by meds”
  • A raised toilet seat and a stool at the bathroom counter can be helpful, as well as a walk-in shower, if possible, some members say
  • Another member uses an electric toothbrush, a hand-held shower attachment and a bath bench “that sits w/ 2 legs inside and 2 legs outside the tub… this allows you to sit down and then raise and swing your legs up and over the tub instead of stepping over and risking a fall. [found a health aid supply store/ Lowe’s, etc.]”

In the living room/bedroom

  • A “good power-assisted recliner” (one member prefers this over his adjustable bed)
  • Silk pajamas and/or satin sheets may make it easier to get in and out of bed
  • “A fairly inexpensive bed rail that goes under the mattress and also rests on the floor… It works for turning over in bed and getting in and out of bed,” another member notes

Getting dressed

  • Members have made wardrobe adjustments, like: “Larger, easy wear clothes, a long-handle shoe horn and pre-tied or slip-on shoes, covered hairbands looped through waistband button holes, an old shoe button hook & large paper clips in zipper grips for those days the fingers refuse to work” (Hint: Here’s how the hair elastic/button-hole trick looks… pregnant women also use this hack)
  • “I use elastic shoelaces so I don’t have to tie/untie my shoes,” another member says
  • “I can no longer button my shirts. This has led to me showing up in t-shirts for events that clearly require more. Then my doc suggested MagnaReady shirts – they have magnets that are hidden behind fake buttons and buttonholes. Genius!”

For communication/entertainment

  • “I also use an adaptive pen (Ring-Pen) and Dragon Naturally Speaking,” one member says
  • Although they can be pricey, a Kindle or iPad can be “great for those of us with tremors. Holding a book sometimes seemed impossible.”
  • In terms of even newer gadgets, “Have any of you heard of Alexa or Google Assistant? They are virtual assistants, built in as a part of smart home devices, such as Google Home and Amazon Alexa —both are smart speakers that you can use voice commands to search information or make a call, or ask them to crack a joke… I’m loving it and it becomes my companion of a sort.”


  • Many members have talked about using canes, hiking poles, walking sticks or folding canes, which fit in a small bag
  • In a discussion about physical-therapy objects, one member says, “I use a foam stress ball at my desk so my hand has something to do besides tremor,” and others say that exercise balls (for sitting with less back pain) and four-pronged massagers (for working out back/neck soreness) can be helpful
  • And in a thread about living solo with PD, one member says, “I have found invaluable aid with my Rollator [rolling walker with a seat], my extended pole gripper that we’ve seen on t.v. for grabbing stuff way down there on the floor or up in the cabinets… Life Alert alarm is essential.”
  • Overall? “Accept what you cannot do safely!!! Reprioritize what’s important, then simplify and learn patience,” a member advises.

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Posted January 3rd, 2018 by

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.

Extraordinary second opinion stories

The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said.

PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum.

After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected.

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. He also made a derogatory statement, [he sat on the lung transplant review committee for the Northeast region] he stated ‘why would I put you on the list when there are so many children that need a lung.’ I responded that I didn’t think I was in the same [transplant candidate] group. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, fellow members with IPF urged her to seek another opinion.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant. “They admitted me to ICU and that’s the last I remember for 9 days,” she says. “I became conscious with a new set of lungs on Sept. 28.”

“I had to advocate for myself all the way and believe in what my body was telling me versus specialists in Oregon,” she says. “Even my GP thought I was in the early stages. If I would have listened to them, I would not be here/alive today. I am 57 years old, they said I have a new birthday, September 28.”

Pointers on second opinions

Steven Petrow, the writer who shared his second opinion success story in The Washington Post, offered some tidbits and tips for other patients in his Op/Ed piece:

  • 10 to 20 percent of all medical cases nationwide are misdiagnosed, affecting at least 12 million people, according to a Mayo Clinic researcher who has studied misdiagnoses
  • Don’t be talked out of a second opinion — doctors should support and encourage them (as PatientsLikeMe members have noted, “A good doctor will not be offended”)
  • “Be upfront and respectful with your doctor” — this can help ease the process of sharing records, and help you maintain a relationship if you stick with your original physician
  • Everyone has a right to a second opinion, and they’re usually covered by private insurance, Medicare or Medicaid (but check with your own insurance)
  • “Not all second opinions are created equal” — find a doctor who’s board-certified in their specialty and (ideally) affiliated with an academic medical center with a strong reputation (avoid only relying on recommendations from friends or a referral from your doctor, because there could be some bias)
  • Consider all your options, including online second opinion resources(Petrow mentions examples like Dana-Farber’s online oncology programCleveland Clinic’s MyConsult and SecondOpinionExpert)

More members chat about second opinions

On PatientsLikeMe, there are more than 4,000 mentions of second opinions in the forums (trend-spotting: you often encourage each other to seek them, as member Peggy recommended in her blog post about self-advocacy). Here are some of the communities that have talked the most about second opinions in the forums — join PatientsLikeMe to see what folks say:

  • Multiple sclerosis
  • Fibromyalgia
  • Mental health
  • Parkinson’s disease
  • ALS
  • Epilepsy
  • Cancer and lung cancer

What’s your second opinion story? Share it in the comments.

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