Leisure and activities

• I have shoulder problems. I suffer from Insomnia.
• Ankle cramps.
• What types of activities can I do?
• I exercise a lot in my wheelchair, 5 days a week. I feel tired.
• After noon, my energy drops to zero. If I take a nap, my energy comes back.
• I do aqua fitness once a week; when I get out, my energy is gone.
• Until 10 years ago, I only needed a cane. Now, climbing stairs, I can't do it anymore.
• I have to wear a long brace, it's tiring. My shoulder hurts.
• I've always lived a 200 km/h life; it's become almost impossible. I have purchased lightweight crutches; I vacuum from my office chair on wheels.
• Sometimes I am tired as soon as I get up.
• I retired at age 65 two years ago. And now I have to use a walker, stairs have become very difficult. I have to have my home adapted. I do some walking on a treadmill.
• I find that it's best when I prioritize my activities for the day in the morning. 

                o  Adriana comments on each answer. She concludes:

                To all of you, you have stated the main characteristics of the Post-Polio difficulties and you have also given some hints for solutions!

              We can classify the causes and solutions in a few categories: reduce overuse, better manage energy, better interpret the reactions of his body.

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

• Cramps They sometimes arrive much later than the effort that caused them. This shows that you have overdone it. A cramp at night can be caused by something else, but also by overuse.
• Burning sensationin the neck, in the arms, etc. probably caused by a static posture that is too long.
• Tingling and sometimes trembling This is a warning of overuse: it is not always necessary to stop the activity you are doing, but the next time you do it, you should take into account what has happened. For example, be prepared to take breaks or change the activity to make it more tolerable in terms of the energy expended. If these warnings come back, modify our action.

Example: If when lifting a heavy object, our hand (forearm...) shakes, it means that the weight was too heavy. Reduce the weight or help yourself, for example by putting 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 still enough room in our energy to do a little more, thus better managing our energy.

• Examples: I get up and it seems very easy: Bravo, I'm going on!
• I get up and it's hard. So, do not delay to take a rest and cook afterwards.
• I wake up and I'm already tired, yet I have things to do. We have to find a method:
• Don't go beyond "a little difficult" Rest for 5 to 10 minutes, then resume. For example, while shopping.                                                         
• Sleep better

o   Examine the factors that prevent you from sleeping well. Have a good "sleep hygiene". Beware of the Internet at night!  

o Reviewing 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 recurring? Talk to a health professional physician, physiotherapist, occupational therapist, etc.

               o    Bring them up to speed, give them a heads up. 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 this could be related to..."

               o    Did they take my question seriously? No? consult another person. Persevere to get a serious answer. Be polite but persistent. Don't think that it is not important. 

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

               o    Prepare to ask the right question; write down questions ahead of time, otherwise you come in and 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...), Have shorter work periods.

                  Use Borg's scale: "I feel it's still easy, so I'll keep going. But if the energy reserve is low, find another way to do it. Sit down to cut your vegetables. Move around on your office chair with wheels. Slide the dish across the table instead of lifting it. Buy a table with wheels. 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 your legs, with your 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    Using yoga movements. There are many video examples on YouTube ("Getting to Mindfulness")

• Some additional questions

           o    Is aquaform good? Very good but: Beware of the Borg scale

           o    How to get an appointment with a physiotherapist? Ask at your CLSC; sometimes a first appointment is already a good starting point. Same thing for occupational therapy advice.

         o    I have to have knee surgery? Prepare a reserve of energy

        Conclusion:

          Be aware of your signs of overuse

          Adjust your environment

          Stop before you are exhausted

          Do small exercises,

   Accept what is happening to us, and then move on.

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

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

— — — —

    Chantal's advice :

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

o           Is driving the car starting to get a little tiring or difficult? Consult the CLSC ergo for vehicle adaptations; some are not that difficult to install. For others, there is a wait and a long process, which is normal because large adaptations are complex and costly: think about it in advance.

o          Washing, dressing, shopping, cooking becomes too hard? Do you live alone? With the CLSC's ergo, could 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 the information on this website and on our Facebook page. Become a member and you will receive email notifications and reminders.

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

o        Sharing zoom sessions : https://polioquebec.org/ Sharing our difficulties, those due to the polio we had in the past, the more recent ones due to the Post Polio Syndrome, sharing our questions and answers (and also our pleasures!), it feels good.

Examples: I am washing. Or I cook. Or I'm going shopping

o   It's very easy. OK, I'll continue.

o   It's hard: take a little time to rest. Take a little nap before you start cooking

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

Very, very difficult: we can't do the task anymore. So you've gone too far. Avoid starting anything else until you are rested.