Thursday, April 30, 2009

ALS Clinic Visit

April 22nd I had a clinic visit where I see multiple specialists to evaluate my condition. I see a pastoral counselor, clinic nurse, MDA rep, nurse counselor, ALS neurologist, social worker, OT and PT, respiratory therapist, and a speech therapist. It ends up taking about 4 hours till everyone sees me.
Here are some of the recommendations that they made.
  • Add more hours for attendant care as needed. Right now I am receiving 17 hrs/wk.
  • Think about attending the support group which I'm not doing at this time. I have thought about going but I keep putting it off due to some reservations I have about going even though it would probably be beneficial to attend. Maybe this month I'll try to make it.
  • Because of increased coughing while eating and drinking, I should stick to a soft diet and take small sips and bites. Decrease distractions when I'm eating or drinking and avoid mixed consistencies of food. As the muscles used to swallow and speak weaken, the risk of aspiration increases.
  • The OT gave me braces to wear on my wrists to support them due to increased weakness and foam handles to put on eating utensils making them easier to hold.
  • My respiratory was down considerably but I think it was because I couldn't form a tight seal with my lips. I don't feel like my breathing has changed all that much so I'm not too worried about it.

My doctor said I'm progressing rather slowly which is a good thing and something to be grateful for. I thank God every day for the time I have and for my wonderful family that support me and love me. I have been blessed with a lovely wife and two wonderful sons and daughter-in-laws. I'm blessed!


Vern Smucker said...

Gordie, thanks for the update.Please know that we are praying for you and Emy - that you would feel the love and presence of God every moment of every day....... We love and appreciate both of you. Vern and Merrill

Chad said...

Thanks for the update... Your a strong man and I'm proud to call you my dad. Hang in there... you are blessed wih a great family and support system :) We're here for you and love you!

Anonymous said...

Hi Gordie,

I just checked your blog--I guess I missed the last 2. Thanks for the update. So glad we can still go out for supper--see you tomorrow night.

oh joy! said...

Hey...I don't mean to be pushy but...GO TO THE GROUP! :) I am certain that you and Emy both would benefit VERY MUCH from the added support! I know from my own experience that sitting in a room full of people just like me is comforting and encouraging in ways that are hard to explain...but very beneficial to my ability to keep on showing up for life. God meets me there everytime.

You're awesome. This is one instance where I am grateful that progress is slow. :)

Peace and love to you...

Anonymous said...

Dear Gordie,
I do not know you but I am reading all you have written. Something in me (maybe the Lord) tell me to tell you to go to the support group. Not for your benefit, but for those attending. I will pray for you.
Anyway just a thought compelled to share.
God Bless,
Judy from Michigan