5 posts tagged “PD community”

Let’s talk: Parkinson’s disease, speech changes + communication issues

Posted 1 week ago by

Parkinson’s disease can cause your voice to become raspy, quiet or unsteady, and motor symptoms can make writing and typing more difficult. Have you experienced communication issues like these? See what others have tried — from Lee Silverman Voice Treatment and voice-activated “smart” devices to (drumroll please…) singing classes.

How PD can impact communication

Parkinson’s affects the part of the brain and nerves that control speech and oral/facial movement. ParkinsonsDisease.net says PD may cause:

  • Softer, breathy, or hoarse voice
  • Slurred speech
  • Mumbling or rapid speech
  • Monotone voice, lacking the normal ups and downs
  • Slower speech because of difficulty finding the right words
  • Trouble participating in fast-paced conversations.

They also break down the medical terms related to these speech symptoms:

  • Dysarthria — A motor speech disorder or impairment in speaking due to PD affecting the muscles required for speech
  • Hypophonia — Soft speech or an abnormally weak voice caused by the weakening muscles
  • Tachyphemia — Also known as “cluttering,” this is characterized by excessively fast talking and rapid stammering that can be difficult to understand

In addition, people with PD may experience tremor, rigidity and dystonia or cramping, which can make writing and typing difficult. Research has shown that about half of people with PD have micrographia (small, cramped handwriting).

Treatments and tools for communication

In our recent roundup of products that help people live better with PD, some members said they use an adaptive pen (Ring-Pen) to help with handwriting, Dragon Naturally Speaking (speech recognition software) to help with typing and computer use, and “smart” speakers/home devices (such as Amazon Alexa or Google Assistant) to use voice commands to search the web or make a call.

Here are some other therapies and tools mentioned on PatientsLikeMe and around the web to help manage PD communication issues:

  • Speech-language therapy or SLT (which can also help with dysphagia/swallowing issues and saliva control)
  • Lee Silverman Voice Treatment (LSVT®), which is a specific type of speech therapy first developed in the 1980s specifically for people with PD (see research on LSVT and join PatientsLikeMe for full access to members’ evaluations of this treatment)
  • Speech amplification devices, such as Spokeman, ChatterVox and Oticon (see a Canadian study on these devices for people with PD — jump to page 70 for patients’ ratings). One person even shared on Reddit about hacking a collar-style microphone to work all day with an Echo/Alexa or smart home device (for his mom with PD)
  • Free dictation software, which is now available on most Apple/iOS and Android phones/mobile devices — just look for the microphone icon next to your space bar on the keyboard where you write text messages (hint: this works for almost anywhere you can type on the PatientsLikeMe app — get the iOS app here and the Android app here!)
  • Other dictation tricks for Apple devices as well as Android, Windows and other systems (many work with Google docs — a free alternative to dictation software)
  • Voice banking with programs like VocaliDMessage Banking or ModelTalker (check out our recent roundup of communication tools for people with ALS)

And explore even more Apple and Android accessibility tools.

Singing or music therapy for PD

Researchers are studying the positive effects of singing in people with PD. Initial research from Iowa State University (which has a weekly singing class for people with PD) shows that regular singing and voice exercises may help the muscles involved in speaking, swallowing and respiratory control. Singing in a group may also help with symptoms like depression and tremor, and overall quality of life, researchers in Australia say.

Choirs for people with PD have popped up across the U.S., from California to Georgia. (Add a comment below if you know of any in your area!)

Which communication issues are you dealing with these days? What’s been the most (or least) helpful? Join PatientsLikeMe today to check out or take part in this forum conversation with others living with PD.

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

Posted 6 months ago 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.

Have any questions or comments about living better with PD? Join today and connect with 20,000+ members with PD.

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