Coffee with Esther (December 2023)

How Can We Help Ourselves?

The coffee breaks are back and going great. We have had a few new members come along and join in. It’s great to see new faces as well as the regular ones.

We’ve been discussing a lot of different issues, but one reminded me of my challenge to re-educate the nerve sensations in my body. It took me a long time to retrain my brain and get the sensation to a place where I recognised them. How did I do it?

First off, you need physical therapy to strengthen your muscles. It is so important after surgery to start working the muscles. Small nerve fibres take six weeks to heal, but the large nerve fibres can take up to 12 or 18 months to heal (as much as they can heal; some damage might be permanent). 

The physical therapist will show you some exercises to do daily. Remember to do only a little and often. The main phrase again, is PACE yourself.  Squeezing a soft rubber ball, or physical therapist putty, helps strengthen your hands. I do this daily, and it’s five years since my operation. The putty can help stop the burning sensation as well.

Next, you need to re-educate your sensation in your nerves. Sensations are harder to retrain as you are retraining your nerves and brain together. Again, this will help you gain knowledge of which sensations are affected and by how much. Myelopathy can affect every part of the body so you may need to do these exercises all over to get your brain retrained.

Sensory Exercises

I suggest you find a quiet space, close your eyes and take note of the places you are feeling the numbness, tingling and burning areas. These are the areas where you’ll need to do the most retraining. The main goal is to help your brain’s ability to interpret the senses correctly.

Here are some exercises you can try:

Texture Recognition

What you will need:

  • Soft material (soft scarves, velvet)
  • Rough sandpaper
  • Fluffy cotton wool
  • Rough Velcro
  • Cool Silverware
  • Soft rubber ball

Take each item one by one in your hands with your eyes open. Think about how it feels. Tell yourself what it should feel like. Keep moving the item around until you feel you can recognise this item again. Then move to the next exercise.

Touch Therapy

Again, you will need:

  • Soft material (soft scarves, velvet)
  • Rough sandpaper
  • Fluffy cotton wool
  • Rough Velcro
  • Cool silverware
  • Soft rubber ball

Place all the items on a table. Now close your eyes and feel an item on the table. Take your time and visualise each object. Say out loud what the item feels like: is it rough, or smooth? Describe the item as much as you can. Then say what you think it is. Open your eyes and see if you’ve described it correctly. If you haven’t described it correctly. Go back to doing the texture recognition (exercise above this one) with the item until you think you have re-educated your brain enough to recognise it again with your eyes closed.

Texture Hunt

What you will need:

  • A bag filled with rice
  • Marbles
  • Coins
  • Small pieces of Velcro strips
  • Cotton wool balls

Bury different items into the bag filled with rice. Find an object and try and guess what the item is. Bring it out of the bag and check if correct.

Temperature Differentiation

What you will need:

  • 2 cloths
  • Cold water
  • Warm (not hot!) water
  • You may need someone to help you with this exercise

Place one cloth into the cold water and place it on your arm. Notice the sensations you’re feeling. Think about how it used to feel before myelopathy. Does it feel the same? If it doesn’t, describe how it feels now and what the differences are. If it’s different, say out loud what it should feel like.

Now take the second cloth and put it in the warm water. Place it in the same place where the cold cloth had been. Now try and sense the difference between them. Switch arms and repeat. Keep doing this exercise until you feel confident you can recognise them again.

Next, close your eyes and get your helper to choose a cloth, hot or cold, and place it on your arm. You have to tell them which one it was. Once you have successfully achieved this, repeat on your hands and fingertips. Notice how it feels in your hands and tell yourself what the differences are now. Do this with your eyes open first, then close your eyes and get your helper to choose a cloth to place in your hands. You must guess correctly.  Repeat this exercise daily if possible.

This exercise is so important. You must be able to tell the difference between hot and cold to make sure you’re not a danger to yourself. I repeat this exercise regularly as my hands/fingertips are extremely numb. I struggle to tell the difference. Even now, the sensations of hot and cold are very different to how they used to be, before myelopathy.

Touch Localization

What you will need:

  • Metal spoon
  • Cotton wool ball
  • Hand warmer (if you have one)
  • Velcro strip

Close your eyes and have someone place their hand somewhere on your arm. Then, point to the area that you think they touched. If you don’t point to the correct area, have them move your hand to that location. Then, open your eyes to visually absorb the information. Feedback like this helps retrain your brain to localize or pinpoint touch sensations. It’s like telling your brain, “I was not touched here, I was touched there.” Repeat this exercise at least 10 times, preferably more!

Once you master this sensory re-education exercise, switch it up by having your assistant touch you with different textured objects, like a cotton wool ball or a metal spoon. Always keep your eyes closed during the exercise and, if you perform the exercise incorrectly, open your eyes once someone moves your finger to help your brain absorb the feedback.

Exercises Summary

Repetition is key to all these exercises to re-educate your brain. Why not give them a go and see if it helps with your numbness and/or tingling sensations?

I do these regularly to keep my brain retrained as if I don’t, the brain will be sending the wrong signals and it may go back to feeling nothing or a different sensation.

I hope this helps!

Virtual Coffee Breaks

If you want to join us for our next Virtual Coffee Break on the Support Group on Facebook, please log in and click on the post with the links to the coffee break.

Here are the dates for the December and January Virtual Coffee Breaks:

  • 14th December at 6pm GMT
  • 4th January at 11am GMT
  • 11th January at 2pm GMT
  • 18th January at 6pm GMT

I would like to wish you ALL a Merry Christmas and a Happy New Year.

See you soon,

Esther