December 21, 2011

Update From Lena

Last Friday we went to our ALS clinic appointment to see Dr.Turnbull and the team there. We had missed our November appointment because we were in Florida, so it was high time we saw the doctor again. Our biggest complaint for the doctor was not being able to sleep. Jack can't seem to get comfortable, numb, tingling feet, leg spasms, breathing problems, etc. He adjusted the medications and wants to see Jack in 2 months again. After seeing the doctor, we met with the social worker who will be sending off referrals to CCAC for OT and PT assessments. Once Jack has a case manager then if, in the future we need more help, this case manager would arrange it. After seeing the social worker, we met with two people from the TAC team, (Technical Access Center). They are here to help us with anything involving communications. They have gadgets and aids and computer programs to assist with communication problems. They suggested that Jack start "voice banking". He is to start storing up phrases and words that he would commonly use during the course of the day and then burn them onto a disc and save the disc. If the time comes that he is not able to speak anymore, then they will provide us with a computer that speaks out what you type and then instead of a digital voice, it will be his own voice that comes out of the machine. We should have started this a few months ago because his voice is now already affected and not what it used to be. We are very thankful for all the technology that is available these days to aid in daily activities.
Jack's smile is especially bright today! Karen Kiely is a registered dental hygienist who has her own business, specializing in bedside long-term/palliative care and she came to our house and cleaned and scaled his teeth. She was so kind and gentle and professional. Jack warned her that he is a gagger and she managed to get through it all gag free! We've known Karen for over twenty years and highly recommend her services to anyone who is shut-in, in a nursing home, retirement home or disabled and unable to get out to see a dentist. Please do check out her website

This evening a friend of ours took us out again to a Chinese restaurant and we enjoyed a delicious dinner and fellowship with him. Jack used his new utensil strap that he received as a gift from Goran and Sarah. It's a nylon strap with a velcro closure that you wrap around your hand. It has a little pocket in it that you can slide your spoon or fork into, alleviating the need to hold it yourself. It works great.
On the way home Jack said that he thinks our going out to eat in a restaurant days are over. It's just too difficult to maneuver his walker and sit at a table with his electric wheelchair and it's getting embarassing for him to eat in front of people, drinking coffee and soup with a straw, keeping food on his fork, spilling on himself, etc. I said that was fine, we wouldn't do it anymore. No more Friday morning breakfasts with the guys. He said, "it's just another thing that I can't do anymore. It's kind of depressing".  Slowly but surely we're getting more house bound. Another tent peg being pulled out......


  1. Our families prayers are with you all.
    It may be one more peg taken out on this earthly life but one more step closer to the most amazing and beautiful place, a place we all may go. How amazing to have a Father in heaven who gives us such a gift. The other day my 8 yr old daughter was talking about grandma and her walk with ALS she than asked me "mommy why can't God have made me be born in heaven there, i can't wait to be there."
    Know that throughout this hard journey when you fell like you can not go on your Father is always there to carry you!
    Tracy Robb Aikema

  2. Our family has been down this road prayers are with you Jack. Our Father said He will never leave you or forsake you. You can do all things through Christ who gives you strength.