2 posts tagged “Parkinson’s disease treatment”

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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Cannabis for PD treatment? Member Ian says it’s something to shout about

Posted June 15th, 2017 by

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my medicinal cannabis,” he says.

Parkinson's and cannabis

Tremors “through the roof”

Ian has been living with Parkinson’s disease symptoms since the mid-1990s. At one point, his tremors were “through the roof,” he says. He experienced severe side effects while on prescription medications for PD – including nausea, acid reflux, heartburn and irritable bowel syndrome that kept him from sleeping and worsened over time. He searched online for natural relief for tremors and Parkinson's and cannabisread accounts of people successfully treating their PD symptoms with different forms of cannabis. “I tried a little and was amazed at the effect it had,” he said

The U.K. has approved one cannabis-based treatment as a prescription medication for multiple sclerosis, called Sativex, but marijuana itself is not legal as a treatment for PD or other conditions. The U.S. FDA has not recognized or approved marijuana as medicine and says the purity and potency of it can vary greatly. Neurology experts like the National Parkinson Foundation say more research is needed on medical marijuana as a treatment for PD because studies have been inconclusive so far, and it can even be harmful for some patients with mental health or psychological symptoms.

Ian says his doctors are aware of the potential benefits of cannabis as an alternative treatment for Parkinson’s but declined to prescribe it because it’s not licensed as a PD treatment in the U.K. So Ian has sourced cannabis products on his own and chronicled his positive experiences on his personal blog and YouTube channel, and – in the spirit of openness – here on PatientsLikeMe.

Going viral

Ian’s initial video about his tremor control using cannabis went viral (with more than 45 million views online), and a Polish medical marijuana website contacted him with a box full of cannabidiol (CBD) products to try. He admits he was “initially skeptical” but ended up being pleased with the relief CBD products offer him. So he added reviews of medicinal cannabis products like Charlotte’s Web and Olimax CBD oils and CBD tea to his vlog.

Parkinson's and cannabis

 

Ian’s reviews resemble a cooking show – with ingredients like solid CBD oil mixed with coconut oil in a saucepan, melted down and then solidified and eaten.

 

For Ian, CBD oil helps alleviate tremors, anxiety and dystonia in his feet, and the effects last four to eight hours.

What’s cannabidiol, or CBD? It’s a compound found in cannabis known to have milder psychological effects than (whole-leaf) “street” marijuana. Cannabidiol is one type of a cannabinoid – the chemicals in cannabis plants that may be responsible for the various effects of marijuana. Just to break it all down: there’s cannabis (the plant), cannabinoids (the name for all chemicals in the plant) and cannabidiol (the specific cannabinoid found in the products Ian uses).

Many CBD products come from hemp plants and are very low in THC (the mind-altering cannabinoid, primarily responsible for the high associated with marijuana use). Ian says the CBD oil he uses contains less than 0.2% THC, in compliance with European Union laws. (Read up on both state and federal U.S. laws here.)

News outlets in the U.K., including Metro and BBC Radio (pictured below), have picked up Ian’s story about treating Parkinson’s with cannabis.

Parkinson's and cannabis

Cannabis treatments got him through his hardest time with PD, when he couldn’t tolerate prescription drugs and wasn’t sure if he was a candidate for deep brain stimulation (DBS).

“I was able to get some relief from medicinal cannabis, which made life tolerable,” he says, noting that the side effects of CBD include a mild high (which he considers undesirable) and increased tiredness (beyond his usual PD-related fatigue).

DBS journey

Ian ultimately learned that he was a good fit for DBS, and he had his implantation surgery in April 2016. His blog (called “DBS – A Complete No Brainer”) follows his DBS experience, from his surgery and recovery to the day-to-day “challenges and victories.”

He currently doesn’t take any prescription treatments for PD. Now that he’s had DBS surgery, he still uses cannabis products to alleviate his symptoms “when the DBS needs some assistance.” He says having DBS hasn’t changed the effects of CBD products he uses, for better or worse.

“Other people may not get the relief from medicinal cannabis that I do – everyone is different and everyone’s PD is different,” he says. “Talk to your doctor about it. Many are open to discussion. The PD meds are well tolerated and effective for many PD sufferers, but not for me.” As always, talk with your physician before starting any type of new treatment.

 

Addressing the stigma

Ian says medical marijuana use isn’t as socially accepted in the U.K. as it is elsewhere. “I believe there is less of a stigma, and wider acceptance of its use as a medicine, in other European countries,” he says. “People are slowly waking up to it, though, so it will hopefully become a more mainstream treatment in the not-too-distant future.”

BBC News reports that medical marijuana is gaining support among doctors and politicians in the U.K., amid concerns about falling behind other countries.

Ian plans to continue spreading the word about cannabis treatments. “I am open about sharing my experiences because it could help others in the same situation as me,” he says.

 

“I believe that it is important that this plant is legalized for medicinal use, and that will never happen if those who benefit from it don’t shout about it!”

 

On PatientsLikeMe

A 2015 survey of more than 200 members with certain conditions who use medical marijuana found that:

  • 74% believe it is the best available treatment for them, with fewer side effects than other options and fewer risks
  • 93% say they’d recommend medical marijuana treatments to another patient
  • 61% said their healthcare provider is supportive of their medical marijuana use

See how many members report using cannabis or medical marijuana and for what symptoms or reasons. Members of the PD community have reported using various forms of cannabis to help treat symptoms such as pain, stiffness/spasticity, muscle tension/dystonia and restless legs syndrome.

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