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Patient tips 10 ways I navigate neuropathy

10 ways I navigate neuropathy

In August 2020, Ronda D. was diagnosed with stage 3b colon cancer. She underwent a bowel resection and eight rounds of chemotherapy. She has experienced several side effects from the treatment, including neuropathy in her hands, legs and feet. Here, she shares the 10 ways she navigates neuropathy with her care team and at home.

  1. Try acupuncture and/or a different medication. I worked with a City of Hope naturopathic physician to see whether acupuncture might help the tingling and numbness. After a few sessions, I did notice some relief. For me, it wasn’t enough to continue, but it led me to talk to my care team about trying medication to help with nerve pain. I no longer have the shooting pain or tingling I once experienced, but I still have trouble with spasticity and grip.
  2. Consider occupational therapy. Each week, I attend occupational therapy for one hour twice a week. We use nerve glides to stretch the nerves in my arms and hands, theraputty to practice opening and closing my hands and perform exercises to improve my upper-body strength.
  3. Test out physical therapy. A big part of physical therapy for me is getting my brain to reconnect with my balance. In addition to neuropathy, one of the side effects from chemotherapy is chemo brain. Physical therapy helps me retrain my brain to improve balance and exercise to improve strength. Twice a week for one hour each, I practice standing on things and keeping my balance. I practice stepping forwards, sideways and backwards. I also receive a foot and leg massage to stimulate activity. It can feel like a lot if this is your recommended treatment, but my advice would be to keep showing up, be consistent and don’t be discouraged.
  4. Don’t be intimidated by cold lasers. This is part of my therapy plan, and it may sound intimidating, but it’s not. The cold laser is painless. You don’t feel the heat from anything. It only lasts a minute or so, depending on the area targeted.
  5. Do your homework. Yes, there’s homework! Each day, I have a list of exercises I practice for both occupational and physical therapy to help strengthen my body. I practice picking up things with my toes, work with bands, even a stretching exercise that involves throwing a towel on the floor and moving it with my feet on a throw rug. It’s exhausting, but don’t skip these.
  6. Don’t panic if you feel different during your therapy sessions. After you get home or even during your therapy session, you may feel symptoms of your neuropathy (especially the burning, stinging pain) start to flare up. The exercises stimulate blood flow. You’re most likely not going backwards in your treatment; it might be a sign the exercises are helping!
  7. Be honest with your care team. Always tell your care team everything you’re experiencing. Sometimes, it’s nothing major; sometimes, it requires an adjustment with your treatment plan. When I first began chemotherapy, I was falling and stumbling. My care team made an adjustment in the medication, and the wobbly feeling got better. It doesn’t matter if it sounds silly or insignificant—they are there to help you. Let them guide you!
  8. Be prepared to “relearn” some things. I had trouble driving after neuropathy. It was hard to feel the pedals, and I would hard brake at every red light. It felt terrifying to lose that muscle memory. I drive now, and it’s fine, but it can feel scary when something you’ve known how to do forever suddenly feels foreign. Give yourself time to get used to everything.
  9. Get creative with your approach! I always try to have a game plan for when I leave the house. Whatever you’re comfortable doing or holding on to keep your balance, do it and don’t feel ashamed. For example, if I go into the grocery store, I always stay close to the cart. Another example is from a recent trip we took as a family to the fair. I didn’t take a cane, so I held my husband Ed’s arm. At home, I’ll use a pickup tool to grab things I need, and I always keep a pair of yoga gloves nearby to help with my grip. Another idea: I reconfigured where I keep popular household items. Whether it’s your favorite kitchen pan or computer cord, find a new, easy-access home for them. This helps me conserve energy. Rhonda D colorectal cancer 3
  10. Give yourself grace. I get tired sometimes after practicing my home exercises and sometimes feel frustrated by my new normal. It can be hard to feel like I need extra help from Ed or my care team. These feelings are OK! Remember to celebrate the small wins, too, even if it’s not a major change from how you felt the day before.
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