Hobbies and activities

• I have shoulder problems. I'm suffering from insomnia.
• Ankle cramps.
• What types of activity can I do?
• I do a lot of exercises in my wheelchair, 5 days/week. I feel tired.
• From noon, my energy drops to zero. If I take a nap, my energy comes back.
• I do aqua fitness once a week; when I leave, my energy is finished.
• Until 10 years ago, I only needed a walking stick. Now climbing the stairs, I can't take it anymore.
• I have to wear a long brace, it's tiring. Shoulder pain.
• I have always led a life at 200 km/h; it has become almost impossible. I got myself ultra-light crutches; I vacuum while sitting on my desk chair on wheels.
• Sometimes I'm tired as soon as I get up.
• I retired at 65, 2 years ago. And now I have to use a walker, the stairs have become very difficult. I need to adapt my home. I do some walking on a treadmill.
• I realize that it's better when, in the morning, I prioritize my activities for the day. 

                o   Adriana comments on each answer. She concludes:

                To all of you, you have stated the main characteristics of post-polio difficulties and you have also given possible solutions!

              We can classify the causes and the solutions in a few categories: reduce over-use, better manage energy, better interpret the reactions of one's body.

                -          Overuse of our body leads to loss of energy, exhaustion, joint pain and leads to insomnia. Signs of overuse 

• Cramps  : they sometimes come much later than the effort that causes them. This shows that we have done too much. A cramp at night can be caused by something else, but also by overuse.
• Burning sensation in the neck, arms, etc. : probably caused by too long a static posture.
• Tingling and sometimes shaking Please note, this is a warning of overuse: It is not always necessary to stop the activity you are doing but, at the next occasion of activity, it will be necessary to take account of what has happened. For example, prepare to take breaks or change the activity to make it more tolerable in terms of the energy expended. If these warnings return, modify our action.

Example: If by lifting a somewhat heavy object, our hand (forearm...) trembles, it is because the weight was too heavy. Decrease the weight lifted or help yourself, for example by resting your elbow on a support while lifting the object.

                                                           Borg          Scale 

Invented for cardiac patients, this effort perception scale (EPE) is an effective tool for discerning when to stop and when there is enough room in our energy to do a little more, and therefore better manage our energy.

• Examples: I get up and it seems very easy to me: Bravo, I continue!
• I get up and it's difficult. So don't delay in taking a rest and cooking afterwards.
• I wake up and I'm already tired, yet I have things to do. You have to find a way:
• Do not exceed "a little difficult" Rest 5 to 10 minutes, then resume. For example when shopping.                                                         
• sleep better

o    Examine the factors that prevent good sleep. Practice good "sleep hygiene". Watch out for the internet at night!  

o Examine the programs on the internet 

 -          Plan your day

o    Prioritize our activities for the day

o    Always keep a reserve of energy, stop before we run out of energy.

  Are          the symptoms recurrent? Speak with a health professional  : doctor, physiotherapist, occupational therapist, etc.

               o     Inform them, put them on the alert. They may not be familiar with polio and its Post Polio Syndrome, so you can help them make the connection to polio: "Do you think it might be related to..."

               o     Did they take my question seriously? Nope ? consult another person. Persevere to get a serious answer. Be polite but persistent. Don't think it's not important . 

               o     Look the professional in the eye, help them help you.

               o     Prepare to ask the right question; write the questions in advance, otherwise, we arrive and we forget. "I have difficulty doing more than 6 actions in a row.  

               o     Keep a diary: Note beforehand the small symptoms and when they appear; tremors, cramps, difficulty sleeping...

   -          Adjustments to the environment during activities

                   Choose ergonomic tools (vegetable peeler, etc.), Have shorter work periods.

                  Uses the Borg scale: "I feel it's still easy, so I'll keep going. But if the energy reserve is low, find another way to act. Sit down to cut your vegetables. Move on his office chair with wheels. Slide the dish on the table instead of lifting it. Buy a rolling table. Use carbon crutches which are much lighter.

  How          to keep our physical condition

During the day, do small exercises

           o     Small muscle contractions, gentle stretching, relaxation     

           o     With the legs, with the arms, on your chair according to your condition

           o     5 minutes at a time, 2 or 3 times a day. Very light, increase little by little

           o     Use yoga movements. There are many video examples on YouTube ("Achieving Mindfulness")

• A few more questions

           o     Aqua fitness, is it good? Very good but: Beware of the Borg scale

           o     How do I get an appointment with a physiotherapist? Ask your CLSC; sometimes a first date already gives good leads. The same goes for occupational therapy advice.

         o     I need to have knee surgery? Prepare an energy reserve

        Conclusion:

          Be aware of your signs of overuse

          Adjust your environment

          Stop before you run out.

          Do small exercises

   Accept what happens to us, then move on.

      Conference given by Ms. Adriana Venturini, physiotherapist, professor at the School of Physiotherapy and Occupational Therapy at McGill University, member of the Polio-Québec Board of Directors to participants of the PARTAGE session held by Zoom on April 11, 2022.

      Notes written by Ms. Chantal Mallen and revised by Ms. Venturini.

- - - -

    Chantal's advice  :

    o       Ask for help before you absolutely need it: The CLSC can register you for a help program and there are often expectations.

o            Driving the car is starting to get a bit tiring or difficult? Consult the CLSC ergo for vehicle adaptation; some are not so difficult to install. For others, there is a wait and long procedures, it's quite normal because the big adaptations are complex and expensive: think about it in advance.

o           Washing, dressing, shopping, cooking becomes too hard? Do you live alone? With CLSC ergo, would the Chèque Emploi Service program be considered? The wait is long: think about it in advance. 

o        Take advantage of the activities offered by the Polio-Québec association: https://polioquebec.org/events/ 

o          Follow information from this website and our FaceBook page. Become a member and you will receive notices and reminders by email.

o        YOGA zoom sessions (on flesh): SHARING: https://www.facebook.com/association.polio.quebec the facilitator adapts very well to the diversity of our physical states, she is cheerful and friendly, she explains in French and English. We have fun and we feel good during and after; it lasts ¾ of an hour, and it's free!

o         SHARING zoom sessions  : https://polioquebec.org/ Share our difficulties, those due to the polio we once had, the more recent ones due to the Post Polio Syndrome, share our questions and our answers (and also our pleasures! ), that feels good.

Examples: I wash myself. Or I cook. Where I will shop

o    It's very easy. OK, I continue.

o    It's difficult: take a short break. Take a nap before cooking

Do not exceed the a little difficult  Take a rest of 5 or 10 minutes then resume the activity.

Very, very difficult: we can no longer do the task. So we have gone too far. Avoid starting anything else before being rested.