Communication technology advances

This clip shows a man who experienced great success from DBS [Deep Brain Stimulation], BUT it also demonstrates a form of group therapy for increasing volume and articulation/slurring issues.

They also speak about the prohibitive out of pocket cost for therapy. This is another reason I am pursuing getting a SpeechVive device. A person can get assistance for the purchase thru insurance.

I have copied excerpts from techpoint.org about the product: https://techpoint.org/2018/04/speechvive-reviving-speech-improving-lives/

“The company’s primary product is a non-invasive, over-the-ear device that looks a lot like a hearing aid, but it’s a lot more than that. With SpeechVive, the device detects the patient’s speech and delivers a sound stimulus into the ear, which triggers the Lombard reflex and causes the patient to speak louder and more clearly.”

“Ninety percent of people who use SpeechVive get a significant benefit — 75 percent get the benefit immediately and another 15 percent need a few weeks of using the device before getting the full effect. There is also a free SpeechVive app for iOS that uses standard earbuds to test for the Lombar. response. The app allows people to see if SpeechVive will work for them before they buy it, and the company also has a “no questions asked” 60-day money back guarantee.”

“When people think of Parkinson’s, they think about the tremors, but one of the most common symptoms of Parkinson’s is a loss of communication (89 percent) due to the patient’s inability to regulate their speech. To their friends and family they seem to be mumbling, or speaking too softly. As a result, people with Parkinson’s get interrupted and talked over, and this often leads to isolation and depression. SpeechVive, as the company moniker states, gives people with Parkinson’s their voice back by “Reviving Speech, improving lives”

I have an appointment with my Primary care Dr this coming Wednesday to get paper work signed for authorization. I intend to make progress reports, once I have my SpeechVive device. 🙂

 

When it is difficult to swallow

[I borrowed this from the Achalasia Eats Blog]

I found this in the produce section of my grocery store & tried it tonight. Pasta can be hit or miss for me – sometimes doing the turn into a pasty glue wad thing. But with this, the “noodles” are butternut squash chips and each serving only has 2 g fat & 100 calories. I cooked them 10 minutes instead of 2 – 4 to make them softer. I also added some canned chicken (because quick, soft & protein).

It was surprisingly good! I liked it a lot and see it being a regular evening very quick go-to dinner. It also struck me this might be a good option for those looking to add more veggies or who are trying low-carb / keto. Apparently there is a dairy-free version, too!

Having an impact

In a post in ParkinsonsNewsToday… Mary Beth Sykes wrote a poignant tribute about her father (An invincible father of six meets kryptonite.) in an attempt to find meaning.

………………………………

“When I was in high school, I followed the written journey of a classmate who was diagnosed with leukemia. Miles Levin struggled to comprehend a senseless battle through the exploration of words. He wore the armor of someone who was too young to fight cancer when he wrote, “Dying is not what scares me; it’s dying having had no impact.”

After a valiant fight, Miles died shortly after graduating from high school, leaving a trail of words behind him. At the time, I had no idea that his story would inspire a chapter of my life. Despite a heartbreaking diagnosis, he found a way to have the impact he desired.

‘Keep Fighting, Stop Struggling’

His thoughts reached far into the future, moving those who outlived him. Years later, Miles’ father compiled his son’s final words and bound them into a book titled “Keep Fighting, Stop Struggling: The Miles Levin Story.”

Miles’ story was the first written journey I followed. I wanted to understand how you could pour your pain into words so you wouldn’t have to carry it around anymore. Nearly 12 years later, I find myself asking the same questions I asked throughout his odyssey. But this time, I’m watching Parkinson’s disease overtake my dad like an evil villain in a Marvel movie.

My childhood hero has Parkinson’s. An invincible father of six meets kryptonite. The man who held my hand when I crossed the street and took me to the ER when I had pneumonia is battling a degenerative disease. And I wonder if whisking sentences together might help us make sense of the senseless.

Exploring illness through words

Today, I write because I love someone who struggles with loss daily. I write because I want to see the world from my dad’s eyes, shaking the illness until pocket change falls out. And I write because I want to understand the tidbits of information that only someone with Parkinson’s can taste.

Seeking answers

What does it feel like to shrink? To disappear from your circle of friends? To retire because you no longer want to be seen? What do you think about when you shake yourself awake at night? When it’s 3 in the morning and you can’t fall asleep again because your body won’t let you? Has muscular dystrophy made it harder to smile? Or are the laughs slower in the making? And where do you find hope?

I don’t want to live in the shadows of sadness. But I want to understand life from my dad’s eyes. I want to pick up the sentence where his words end and turn them into a story. I want to bridge the gap between the theoretical and reality, filling in the blanks with my own understanding of what it’s like to feel yourself change. Today, I’m beginning my own journey by tossing words onto a piece of paper in an attempt to find meaning through one man’s journey with Parkinson’s.

Strategies for preparedness

September is here, dragging National Preparedness Month (NPM) with it!

(What follows was taken from an article by Sherri Woodridge as found in the Parkinson’s News Today newsletter)

How do you prepare for a disaster? 

I recently read an article about a man with Parkinson’s disease who had a delayed flight and didn’t have any surplus medication with him. The airline staff was no help. He could have prepared by carrying a spare supply (or two, three, or four days’ worth) of medication with him at all times.

I started doing this a while ago, as you just don’t know what might happen. Doing this has saved me countless times from experiencing an unplanned “off” time. Or worse.

Why do we put it off? 

The old adage “It will never happen to me” comes to mind when asking that question. But the truth is that disasters, like a Parkinson’s diagnosis, can happen to anyone at any time, no matter their age, time zone, or bathroom decor. 

Shortly after the Loma Prieta earthquake in 1989, my in-laws invested in a good-sized duffel bag. This was to be their “grab-and-go” bag. They kept it in the closet next to the front door. It was ready to grab and go if they had to get out of the house in a hurry.

Experience had shown them what it meant to confront a disaster head-on. They weren’t wasting time preparing for another disaster.

When it comes time to discuss your disaster plan with loved ones (now!), make sure to designate a meeting place should the need to evacuate arise. Just as you should update the supplies in your bag, you also should occasionally update your meeting place to ensure it still works for everyone involved.

What should you include in your bag?

If you are at home when disaster strikes, you will be ready to head out the door with your emergency duffel bag. However, if you are at work or elsewhere, having a mini bag is recommended, such as a backpack or a small duffle bag that you can store in your car. 

Everyone’s bag will differ slightly, but to get you started, following are suggestions of what to include in your mini grab-and-go:

  • Copies of your license, Social Security card, medical information (doctors, medications, insurance info, medical hardware charger and info, emergency contact info, allergies, etc.), all sealed in a waterproof bag.
  • Medication for two to five days.
  • Cash (in smaller bills).
  • Small flashlight and spare batteries.
  • Multipurpose tool.
  • First-aid kit.
  • Bottled water.
  • Small snacks. 
  • Comfortable shoes and a lightweight jacket.

Large duffel grab-and-go suggestions:

  • Duplicate contents of the waterproof bag listed above.
  • Cash (again, smaller bills).
  • First-aid kit.
  • Extra medication.
  • Toilet paper.
  • Personal wipes and antibacterial soap.
  • Multipurpose tool.
  • Flashlight and spare batteries.
  • Water, freeze-dried meals, dried fruit, and nuts.

The list can go on and on, and you can find more suggestions on what to include at the government’s build-a-kit site.

Assembling a preparedness kit will give you some peace of mind should a disaster occur. At the very least, it should help to prepare you.