Let’s get straight to it. Early December was our last ALS clinic where we met with all of Dirk’s doctors.  

Clinic Update:

In September Dirk’s ALSFRS score was 25 out of 48. At his December visit his score was 21 out of 48. His lungs MIP (maximal inspiratory pressure) score was -50 with a vital capacity of 1.99L (33% capacity). While his MIP score actually improved from September (-40) his vital capacity did drop a little from 2.03L. Note that lung testing on a Bulbar onset ALS patient is not the most accurate results and so we don’t rely too heavily on the results but more on Dirk’s actual symptoms (out of breath, dizziness, headaches…etc. of which he doesn’t have any).

He did continue to lose weight and dropped from 228 in September to 210 in December. 

How has he progressed?

Since my last update Dirk got a PEG feeding tube surgery and has switched entirely to all calories consumed via his feeding tube and just eats a bite here or there for pleasure. He can still eat food and swallow but his hands/arms progressing make it more difficult to get things to his mouth by himself. After some trial and error with formula we decided to switch to home made blends and I am now blending all his meals myself. His stomach is much happier now and he overall feels way better!

Up until this week Dirk has been able to move around the house with a walker along with assistance standing/sitting and the chair lift to get up/down the stairs. This week the calf and achilles muscles seem to be struggling to relax and let his left foot down. The muscle spasms are also increasing and with the combination of the two it makes it very challenging for Dirk to get a good enough footing to balance himself and walk.  Essentially he is in the window of losing his ability to walk on his own. Sometimes he can make the walk across the house by himself, sometimes he can’t. This has caused my Dad and I to have to brainstorm and create new systems to keep Dirk and ourselves safe. Not only is it physically overwhelming but incredibly emotionally overwhelming to make this transition.   With the loss of walking also introduces the need for more in-home care as Dad and I need more assistance and training to make sure no one gets hurt. 

We did receive a very cool and custom wheelchair from UW but it mostly sits in the office at this point. He is more comfortable on a daily basis in his recliner chair and we aren’t going many places and so I’m not sure how much he will use it. We do use a smaller wheelchair to get him to and from the bathroom if he’s not up for trying to walk. 

We also transitioned him to a hospital bed in the last month so that he can sleep slightly propped up and it has bars on both sides which make it easier for him to grab on to roll over in bed. It is also much taller which makes getting him in and out of it much easier. 

He has lost all abilities to speak. He can give a yes or no but other then that its almost impossible to understand him. We did transition him to using his EyeGaze computer which opened up his communication capabilities again and are loving hearing him speak through it. He texts me constantly all day and I love it. It’s like it gave him back to us again after losing him for a little while. 

He is in pain. Not a ton but enough to nag at him all the time. Muscle pain associated with the lack of movements and nerve death. He is on ibuprofen and acetaminophen on a daily basis and we have the option of stronger medication if he needs it but wants to hold off as long as possible. 

Naturopath?

We took a pause from almost everything in terms of medications and supplements shortly before his feeding tube surgery. We were both physical and emotionally overwhelmed and frankly, Dirk was sick of having to swallow crappy tasting stuff. So we took a break until he was ready to try again. He has come off all of the “ALS” medications that are supposed to slow down his progression. We haven’t seen any change in his progression speed since coming off those medications. In January he decided he wanted to go back down the Naturopath route and started seeing his doctor and a PT at his clinic again. Outside of some help reducing pain and stiffness in his shoulders, we haven’t seen any benefit from it yet but know it can take 3-6 months to see any kind of progress. I have noticed he overall seems to feel better while on all of the supplements than the days he hasn’t been on them.   

His naturopath had us run a ton of labs and found his heavy metal load was very high with aluminum, tin and lithium. We are doing a heavy metal detox at the moment. He had done a parasite cleanse and is now clear of parasites and has overall lowered his bacteria levels and his gut is looking much better. We also did a bunch of lab work and tested positive for several viral infections including Epstein-Barr Virus as well as his Thyroid levels were off indicating it is under some stress from something viral. The list of things she believes he has is pretty long and we are slowly peeling away the layers of that list.

Needless to say, the atmosphere and thought process at the naturopath clinic is drastically different than the ALS clinic. The ALS clinic is quite literally there to help him die comfortably. His naturopath’s perspective is that something is causing what is happening to him and we need to get ahead of it and stop it…and then even reverse it. The question is if we can be fast enough to do that.  We actually spent all day today at the clinic doing testing, IV therapies and PT and they would like him doing IV therapy and PT 1-2 times per week.

We are choosing hope and a perspective that Dirk can be healed because we know God can heal him. If Dirk is not healed, then at least we had some time where we were able to have a positive hopeful outlook and know we tried everything.

Some fun things:

Adeline turned 6 on December 1st and we celebrated with a Cheetah themed party! Everyone came dressed up and we had a blast.

We  went to Seabrook in December with almost all of Dirk’s family in one big house and were able to have a fun 5 days together with them!  We also got out of the house and went to Zoo lights before Christmas. 

Both Christmas and Thanksgiving were hosted at our house this year which was so much fun and we were bursting at the seams with family.

Praise and Prayer Requests:

• Praise that Dirk’s progression seems to have slowed back down to 4-5 points every 3 months (compared to the 10 points he lost in the summer).
• Praise his lungs have also seemed to stay at a very slow progression. 
• Praise that his PEG surgery went smoothly.
• Praise that his EyeGaze has enabled us to find joyful conversations again and communicate more.
• Praise that the UW has allowed our future attendance of the ALS clinic to be done virtually!
• Continued prayers as we adapt to Dirk’s constantly changing abilities and that we can keep him and ourselves safe. Also for the constant emotional adjustments that come with this.
• Prayers that the naturopath’s perspective and testing would produce some answers and help us slow his progression or in the least help him feel better.
• Prayers as we navigate figuring out some in-home care (I’ve been playing phone tag now for 2+ weeks with our insurance about submitting a claim!!). 
• Prayers his pain would subside. 
• Prayers for my energy and endurance specifically in my daily tasks and also with my girls. My parents are a HUGE help in daily care and entertaining of the girls but I would love to be more present for them. 

And as always, some photos: