Welcome to my blog. I have had ALS for 10 years now.

Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Saturday, May 29, 2010

ALS Clinic check-up

Once again I had my 4 mos. check-up, and once again the doctor, nurse, OT, speech therapist and social worker were extremely helpful.
For the first time, I didn't have a list of questions, complaints or concerns. This may be in part the result of my poor speech. However, my friend Lyn who accompanied me, said I talked non-stop. Some things never change! LOL.
My speech has gone down hill incredibly over the last 2 mos. and everyone is aware. Therefore, I'm making an appointment with the speech therapist to learn more about the speech program(Proloquo2Go) I downloaded on my iPhone. By Christmas, I doubt if anyone will be able to understand me. I will communicate mainly by email and a speech device. Please be patient with me as my mind will remain sharp(brilliant as usual. Ha!).
My strength in my hands, arms and shoulders has decreased. It's difficult to raise my arms beyond the level of my shoulders. Therefore, it is tedious to hold a fork and eat, brush my teeth, raise a coffee cup to my lips or reach the slot for my bank card at ATM. The height elevator on my power chair helps with many of these things, and my wonderful care aides help with the others. I'm coping well, but have my frustrating moments.
Because my FVC(forced vital capacity for breathing) has dropped recently, the doctor has advised considering a feeding tube some time in next 6 mos. This is fine with me(probably a one day stay in hospital or done as out-patient). I may not use it for some time but need to have it done while my breathing is above 50%. I'm a poor water drinker so this will help as my carers can pour water down it--hopefully not drown me!
My OT from the clinic is arranging someone from Assistive Technology to construct a camera mount for my new power chair. This is so exciting for me. Most of you are aware of my passion for photography. It won't happen until July but it will make taking photos less fatiguing and gives me a chance to continue bombarding you with "about town" snapshots.
I think that's about it for now. It was a good visit and although ALS is continually robbing me of independence, I'm keeping ahead with props, knowledge and following the old advice, "keep living today to the fullest rather than fearing tomorrow."

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