3 posts tagged “assistive equipement”

Staying mobile with assistive walking devices: Member Cathy weighs in

Posted 4 weeks ago by

Do you have difficulty walking or getting around? Have you considered using a wheelchair, walker or cane? Making the decision to use a walking or mobility aid can be difficult. You’re not alone. Here, PatientsLikeMe member Cathy living with multiple sclerosis shares about how she overcame the fear of losing her independence and how using a cane is helping her “live the kind of life we all deserve.”

When you’re first diagnosed with multiple sclerosis, it’s typical to have questions and concerns that are overwhelming and cause great anxiety. In the age of “fake news,” this anxiety increases when we’re bombarded with television programs that characterize disability as a downward slide. It doesn’t have to be this way. A positive attitude and a bit of determination can help us live the kind of life we all deserve.

One of the greatest fears for many after being diagnosed is if MS will progress to the point of losing our independence. After enjoying a life of self-reliance, the thought of depending on assistive walking devices such as canes, walkers, scooters or wheelchairs is frightening.

I was twenty-eight years old when I was diagnosed. My legs and hands were weak and numb, and my balance was so bad that an ignorant passerby accused me of being drunk. I refused to consider using a cane. I remember taking a walk with my father, his legs twice as long as mine, and trying to keep up with his pace. It was a losing battle. When we crossed the street he threw his long arm out in front of me like a crossing guard, silently knowing how slowly I walked and how long it’d take to cross the street. I’m sure his heart was heavy, and being with him at that moment, my heart was heavy, too.

On accepting a new normal

I was experiencing debilitating MS fatigue, so refusing to use a cane only increased the exhaustion. Later, I learned that favoring a strong leg over a weaker one is not only tiring but also increases the chance of falling and being injured. I had to end my stubbornness for safety’s sake.

I learned that lesson the day I walked through a crowded restaurant and my legs buckled under me. I fell hard on the wooden floor and my friends helped me to my feet. Patrons all around us glared and I was completely mortified. It was at that moment I admitted to needing help.

My friend Abi Budd has a similar story. It took her awhile to come to terms with using a mobility scooter. She struggled with walking and became terrified of her inability to go from one place to another without falling. Her denial was affecting her lifestyle, but her determination and positive attitude led to acceptance; a chair would help her regain the freedom she once knew. She has an infectious attitude.

The same is true for another friend, Debbie Petrina. She doesn’t allow her MS to stop her but embraces the use of assistive walking devices to give her the freedom she desires. “Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk.”

Learning to accept your new circumstances and relying on assistive devices is a surefire way to live the best life possible. I’m not saying it’s always easy, I’m just saying it’s worth it.

Cathy’s picks: Helpful resources

Do you use a cane or other type of mobility aid? How and when did you make the decision to start using one? Join PatientsLikeMe and share your experience with the community.

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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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