Quality of Life - Scleroderma Hacks & Products

This is a list of ways to do things that I've discovered make my life easier and/or allow me to have awesome quality of life AND maintain independence. A lot of the ideas might be obvious for some people, but maybe they aren't for others.


I have listed these tools in my Scleroderma Scoop Hacks & Favorite Products list on Amazon for easy access and they can be seen "in action" via pictures over at this album on Facebook. You don't need an account to view them.


* First and foremost, I've learned to have GREAT, loving people around me. I've let everyone else go or keep them afar. The extra stress and drama are negative.

Exercise - Keep those bodies moving!

* Gentle or Assisted yoga classes, directed at older folks, or folks with physical limitations are honestly super helpful. They use chairs and props to help us because getting down on the floor might not be possible or stretching and flexing to certain postures might not be possible for some of us.

Check out Yoga for Scleroderma for FREE videos and a list of practitioners near you!

* Consider working with a personal trainer and/or nutritionist that can address your specific needs.

Greg Cohen of Confidence in Movement is a GREAT resource. Greg is a Scleroderma patient who lives a life that's all about movement and staying healthy.


Greg has a diversified education in this arena:
- Masters in Public Health with a focus on Lifestyle Management
- National Health & Coaching Certification
- Nationally Certified Group Fitness Instructor
- Culinary Arts Degree

You can connect with Greg at his Instagram Account.

* Recumbent exercise bike. There's no way my hands would work with normal handle bars and my arms don't straighten enough to even comfortably reach handle bars. The recumbent bike has you in an actual seat. It's very nice.

*Even "better" than the recumbent bike, are "pedals". I use them during my evening tv time. Even at the lowest tension setting, just pedaling is good to keep my joints moving. Increased tension can help build muscle.

All from the comfort of my home while watching a movie or listening to some podcasts. I find if I can build movement into parts of my life like this, it’s easier to. I’m not focused on the exercise and hating it because I’m focused on watching tv instead. Is this perfect? No, but I’m getting it done, right?

They’re foldable so they can easily be tucked out of sight AND they’ll easily go in the camper when I hit the road!

You can find them on Amazon here or if you search "desk bike pedals".

* Horse therapy was also helpful for me. Look for a riding center near you that offers therapy sessions. http://www.narha.org

Personal Care

* Showering/Bathing
- Use hand soap dispensers in the shower. I put body wash and shampoo in them. Much easier to
deal with those bottles once in awhile for refills versus everyday in the shower.
- In the past, I have taken a bamboo back scratcher and attached a razor to the end with velcro straps
or a rubber band to assist with shaving when I wasn't very flexible.

* Dental
Use a toddler toothbrush. The small head and soft bristles are perfect for those of us who have smaller mouths from the Scleroderma.


* Dressing
- The sock assist
- Elastic or Bungee shoe laces.
- Shoes without laces. Fortunately, even sneakers come this way now.


Kitchen/Eating

* Food Prep
- Pre-chopped or frozen vegetables. Sometimes a tad more expensive, but SO much easier for prep when your hands are curled and it's hard to hold things still or hold a knife. Many grocery stores now provide pre-chopped and washed fruits and vegetables. - jar/bottle opener - I was skeptical. Sometimes it sounds like it's going to die and not
open the jar, but then, the magical "pop" as the seal breaks. Savior #1 in my kitchen. I've had one
for 10+ years.
- can opener - I got mine at Target. You can get them on Amazon or at Bed Bath & Beyond, as well. I was skeptical at first, but it looked so much easier than what I was struggling with at home. I can't hold a can in one hand and put it in an electric can opener. I certainly can't twist a manual can opener. This product is a savior in my kitchen!
- knife - I have one similar to this from Ikea. The 90 degree angle allows me to grip the knife securely and do the cutting I need to do. The knife I purchased at Ikea was roughly $10, but it has made my life so much easier, I would pay the $36 to buy it from this supplier.
- Wine opener - If you enjoy an occasional glass of wine, invest in one of these.


* Drinkware
- Use those wine glasses for regular drinks, not just wine.
- Mason Jar glasses with handles.
- A 24 oz. reusable Starbucks cup with an added handle as shown here.
- Tervis has great cups with handles, too. The lids can be a struggle, though. Silicone lids from
Amazon can be an alternative - just cut a slit in the top for a straw.

* Utensils
- Appetizer or dessert size utensils can be useful if full size silverware are cumbersome due to curled hands.

* Snacking
- This one is a happy accidental find. Once while out sightseeing, when I used to still eat junk food ...one day, the then hubby came to the car with M&M minis. These or gum containers are perfect to have in the cars or my travel bag. I buy them just for the container and throw the candy away. Seeds or nuts that you may like fit in the container and you just use it like a shot glass instead of fumbling around with your hands. These tubes will work great!


Laundry

* A laundry basket on wheels. Like the ones they use at laundromats. These, too, are a tad pricey, but I can wheel it around the house and the basket is almost at waist height. It makes it very easy for me to get the laundry, since I can't reach the floor very well.

* If you ever need a new washer and dryer, you might consider investing in front loading ones, on pedestals. It can be difficult or impossible for some to reach down into the washer or crouch down to get things out of the dryer. On pedestals the tubs are right at waist level, making them easier to get clothes in and out of. HOWEVER, I have recently discovered that a top loading washer is actually easier for ME. Getting items out of the back of the dryer is still a challenge, so I use a child's garden rake that I purchased at Tractor Supply.

* Oxo, among other brands, makes some great kitchen cleaning sponges/brushes. On handles and such. The handles can be filled with dish soap. Making it much easier than trying to wrestle a dish soap bottle every time you're in the kitchen. They are much easier to use when your hands are curled and you can't handle a sponge. Or don't want to bang or rub your knuckles on pots and pans or counters. I use the sponge on a handle to do my counters. The brushes on handles are good for pots and pans.


Meds

* Weekly pill reminders. I have them in pretty colors and every 2 weeks I fill them all up. It makes dealing with all those bottles much more pleasant. Once every 2 weeks is better than every day and keeps you on top of your refills. ~ Thanks, T!

* Shot glass - For years, I've been keeping a shot glass with my pills and "take a shot" (or two, or three, depending on the pill count at any given time) every night before bed. I have a plastic one I travel with and a pretty glass one for home. It just seems easier for me to take my pills out of a shot glass. Might sound silly, but try it and see.


Driving

* Seatbelts
- Velcro cable ties. I have managed to loop one around my seatbelt, providing a thumb hole for me to grab and easily pull the seatbelt forward to hook. I've also fastened one around the inside handle of my car door to be able to loop a finger into so I can easily open the door.

* Debit/ATM Card Readers
- Use a chip clip, mini binder clip, OR surgical forceps (the best of the 3 in my opinion) on your debit/credit cards to make the gas pump or ATM easier to use. 


Out & About

* Restaurant drinks
- When at a restaurant, order your drink in a wine glass. They look at you funny, but the stemmed glass makes the dining experience so much easier. No worries about spilling!

* Hydration
- Water bottle - Carry a double-walled stainless steel water bottle with you to stay hydrated. For a long time, I enjoyed S'well or Aladdin Fresco bottles because both have narrow tops, and were easy to grasp with my curled hands.
- Cups w/ Handles - I've since updated to using a 24 oz. reusable Starbucks cup with an added handle as shown here. The bottles became harder to carry with my compromised hands. 

*Drive-Thru/To Go Drinks - I also carry one of the handles in the car with me so that if/when I go to the drive-thru, like Starbucks, the window attendant can just put my drink into the handle and I don't worry about dropping and spilling.