812 posts in the category “Conditions”

MS research: What’s the latest?

Posted February 23rd, 2018 by

Keeping tabs on the latest MS research isn’t always easy. So, our team of in-house health professionals took a closer look into some of the treatments in the research pipeline for people living with MS. Most of these treatments are in the final phase of clinical development — phase III clinical trials. In this phase, researchers compare the safety and effectiveness of the new treatment against the current standard treatment.

Check out the roundup:

  1. Ozanimod – An oral treatment in phase III clinical trials with the potential to reduce relapses and prevent neurological damage. Ozanimod is reported to work like Gilenya (fingolimod) but with some potential for fewer side effects. A new drug application for ozanimod was submitted to the FDA in December 2017. This application is seeking approval for the use of this agent to treat relapsing multiple sclerosis. It is possible that an FDA decision could be made on this application in the second half of 2018.
  2. Ponesimod – An oral treatment in phase III clinical trials that prevents immune cells from damaging myelin that insulates nerve-cells in patients with MS. A new drug application for Ponesimod is possible within the next couple of years.
  3. Siponimod – Similar to Ozanimod, Siponimod is an oral treatment in phase III clinical trials that may reduce risk of relapse and disease progression. With a new drug application in the next year or two, the treatment has the potential for approval and launch 6-12 months later.
  4. ALKS 8700 – This oral treatment (currently in phase III clinical trials) is a slightly different formulation of Tecfidera (dimethyl fumarate) but, according to Alkermes, has fewer gastrointestinal side effects. With a new drug application in 2018, the treatment could be available 6-12 months later.

In other treatment news:

Laquinimod – You might recognize the name because initially, it showed some promise. More recently it’s performed poorly in clinical trials. Laquinimod is still being developed but in Phase II studies (vs. Phase III which is the final phase of clinical development), which could mean it’s at least a couple years away.

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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.”

Etc.

  • 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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