Progress Report

St. Joesph's Hospital and Medical Center

Every 3 months my mom is seen by her team of physicians and specialists to document her prognosis with ALS. So, as a family we made the trek downtown yesterday to hear our fate. ;) I joke... sort of... 

The drive started out rough as mom found herself really sick. The nausea came with full force and caused a whirlwind of pulling over. We assume just another side effect from a new medication- but, with ALS-making assumptions is never a good idea. As we walked into the lobby of the clinic I felt such an overwhelming sense of gratitude-a feeling of being so blessed. I looked around and saw the heartache etched on several faces. I couldn't help but stop and say a silent prayer for those surrounding us. 


We then found ourselves in a stuffy white room with a window facing a beautiful view of the city. Within seconds we were greeted by a gentle, and heartwarming physician. He spoke with such kind words and listened so intently to the few words my mom could speak. He read off her "boogie board" and smiled and laughed as they had a sweet conversation just between the two of them. He examined her- tested her strength and reflexes. He spoke of more clinical trials and offered explanations for even the smallest of concerns that we had. 


One by one we were greeted, educated and given hope with every specialist we saw. We made tough decisions but found ourselves feeling free and confident in the direction we have chosen to go with mom's care. There was a peace and sense of relief that filled the air. It was refreshing. 


Our lives are constantly changing. We are adapting to a new normal. We recognize that what we had is lost but we are gaining something greater. We are learning and receiving love in a new found way. It has enriched us. We are learning to live positive and grateful lives in the midst of this horrid nightmare.  Mom still has a lot of life to live and with the decisions we have made regarding the PEG tube and the wheelchair she will be given the freedom she needs to enjoy that life!


Here is the breakdown of her prognosis: 

•  Lung capacity has stayed the same and ranges between 32%-38%
• We finally got her Bi-Pap machine regulated and adjusted with new settings. :) This should be a huge improvement. She hasn't been able to use it based on the settings before. If we have had any complaints regarding her care thus far it would definitely be with Apria. Their staff holds little education and provides zero compassion.   
• Her neck and shoulder muscles have weakened slightly. We have been aware of this for awhile so it didn't come as a shock. She is very cognizant of how she feels and she rests and uses pillows as needed. Bonus: new furniture! Dad bought her a beautiful brown leather recliner to offer her support. Any excuse for new furniture... :) 
•  Her hips are weak but no weaker than last time. She showed some new weakness in her back and  left leg but it was slight and not a significant difference. We are aware of this and have taken measures to combat it. We are on the list for a companion wheelchair. This will offer support and give her rest when she is out and about. 
• The most significant change from her last appointment is her weight. She has lost 12lbs in the last 3 months. Because it has been proven that a high caloric diet helps prolong life with those suffering from ALS this is a very significant amount of weight to lose. As a family we decided that it's time for the Peg tube. This will give her the proper amount of nutrition she needs to maintain her energy and keep her from becoming dehydrated. They have her orders written up and we should be able to schedule her appointment within the next few weeks. We are sad that this has now become a necessity but we are grateful for what it will do for my mom. This will take so much pressure off of her. She will be able to eat for pleasure without the stress of making sure she gets enough. This is also going to alleviate the awful choking spells she has when she eats and drinks. 
• Lastly, because she will be having the Peg tube put in she will qualify for a new clinical trial. This trial is studying nutrition and the effects of high calorie moderated diets. If there is still availability left to participate she will. She is excited to do anything that might further research and bring treatments or a cure for ALS. She did ask about several other trials being conducted. However, the majority of these trials require that your lung capacity be 65% or greater so she is not eligible to participate. This was hard for her. 

We could feel your prayers yesterday and felt such relief that although, the visit is always hard, we did not receive any devastating or "new bad news".   Thank you for loving my mom enough to pray for her! 

You can find the report from her last visit here.