From 7:45 am until about 1:30 pm I made the rounds of the different departments here at the clinic.
This time,
I paid visits to the nurse for general updates from my prior visit.
Still losing weight....
Then, a visit with the Speech/Swallowing Therapist and Nutritionist.
Techniques were discussed to improve my eating and the impending installation of a PEG feeding tube.
again, still losing weight...
Went to physical therapist section that gave me guidance for everyday living and I was given a referral for OSU to prescribe a POWER WHEEL CHAIR with the recommendation of a Permobil brand....capable of handling anything I may need....to include a ventilator.
Also, given prescriptions for a more substantial neck brace to replace the foam generic off the shelf one I had been using.
Headmasters>>>>>>>>>>>>>>>>>
I was advised to get a rigid leg lift strap to help stretch the muscles in my legs and ankles esp the left leg so that I can better use the Otto Bach foot ankle brace I have. (The strap I ordered through amazon. It arrived quickly and now I can sit here and stretch. IT is like one of those dogless dog collars on a leash...like you see at the county fairs etc. as it is rigid...funny! great for jokes.)
And, after assessing my current walking traits, the PT (Matt) told me to use the U=Step walker MOST of the time when I
am walking.....(the U-Step I am VERY HAPPY with BTW!) I did not have it the last time I was at Cleveland Clinic (in fact it was prescribed for me by PT at OSU. ) I used a transport chair this time to get around as there is a lot of distance to cover between the parking and where I go for appointments. At home in the house is where I use the U-Step, MADE IN USA (SKOKIE, ILLINOIS)
Spoke with the local ALS Support group liaison as well as one from MDA and social workers where my husband Brent was able to VENT his frustrations with the current systems aka. Social Security etc.
I wish to interject here................HOW WONDERFUL AND ACCOMMODATING THE VOLUNTEERS ARE WHO WORK IN THE ALS CLINIC HERE IN CLEVELAND, OHIO !!! :)
They provided much needed support esp. during this visit. I was having coughing/choking issues and they kept me well supplied with HOT tea that helps reduce my issues with this :) Most of the volunteers have a personal connection with the disease of ALS or something similar....and their feelings on the subject that they share comes from the heart. They are comforting.....and very helpful.
Lastly, we spent time with Dr. Erik Pioro my neurologist and the head of Neurology at Cleveland Clinic.
As always, he is very compassionate and tries to be as helpful as possible to my and my husband's needs.
He does his own assessment during each visit I have with him.
This time, I told him that I had recently had a DNA test done for my ancestry information....but, that I had the information in 'the raw' as it is called and asked if he would be interested in it for 'science'.
He found what I told him about it interesting and invited me to send it to him.
Besides, my true ethnicity.....it may provide information about my health condition that may be helpful to others in the future.
Dr. Pioro suggested we try to get in to see a Pulmonary physician this time....who had a cancellation but knowing we would be going to OSU next week, we declined as I was overtired by then and eager to return home. The appointment would have been brief anyway, and we wouldn't be seeing him for another 2 hours.
Getting the snacks and BiPap ready for the trip home.
Until next time, Cleveland Clinic!
And so, we left the clinic driving the three hour trip straight home :)
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