I have registered for the Walk for ALS event held on June 14 in Ottawa. Please check out my page at:
http://my.e2rm.com/PersonalPage.aspx?registrationID=2317077&langPref=en-CA
or click on the button below. I am looking for people who would like to sponsor me, join my team and walk with me or both!!! So excited as Don is flying all the way from St. Maarten to walk with me! My team name is Living Loving Laughing Walkers.
My clinic visit was positive yesterday although long and emotionally draining! The best news is that my breathing, coughing, talking and swallowing scores are the same as they were in January. No one will stop me from having my voice heard!!! My arms and legs have declined a little, I am now getting 3+ and 4's out of 5 but it is no surprise as I can feel the weakening and lack of strength. I am positive though as I am still independent and mobile. The results mean that I will be getting a transport chair, basically a portable wheelchair so that I can save my strength in getting to places so I will be able to enjoy the places once I arrive! It will be helpful for our shore excursions on our upcoming cruise. I will also be looking into getting a motorized wheelchair. Walking to the shops which is about a 10 minute walk for people without mobility issues is tougher than I thought it would be, so the wheelchair will ensure that I can get home again! Although my body is physically ready for these tools my mind is another story. I think the wheelchair is the biggest mental change so far. The staff at the ALS clinic say that often patients get in their own way by not accepting the tools that may be helpful with energy conservation. I really get that as part of me feels that why would I use a wheelchair when I can still walk? Being a therapist I need to tell myself what I would tell others that it is not all or nothing. I will use the chair when I need it, and store it when I don't.
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