Well I have been bad at updating lately! It just seems life is constantly busy and I have struggled to wrap my mind around everything and process it. 

Clinic Update:

In mid-September we had another ALS clinic and as always, not the greatest update. In June Dirk’s ALSFRS score was 34 out of 48.  At his September appointment he was a 25 out of 48. In past months he usually averaged dropping around 5 points every 3 months. We aren’t sure of why the drop was so drastic this time other than the disease is more prevalent throughout his whole body where at in the beginning it was more isolated to just his mouth.  

His lung scores are now a MIP of 40 versus June he was 58. That in combination with his weight dropping around 20 pounds since June means we have scheduled a PEG (feeding tube) surgery for November 8th.  We believe the weight loss is partially due to our move and adjusting to meal prep living with my parents in conjunction with his continual muscle loss.  He does not completely need it yet in terms of food consumption but that in combination with his decreased lung scores means he is in a window where the surgery would be safe to perform. We will switch his meds to liquid which will be much easier on him as they taste awful and we will start to supplement so he can have smaller more enjoyable meals.

How has he progressed?

There are only a few people who can still understand him and even then it’s maybe only 25% of the time with lots of repetition. We tend to ask him lots of yes or no questions. When around people he doesn’t see much he doesn’t usually try to speak and simply uses his phone with a stylus to type out words into an app. He has an EyeGaze machine but hasn’t really used it much yet. 

His hands and arms have progressed significantly. We have adapted what he eats mostly due to what is easy to physically feed himself. Soups are too much work…etc. Thankfully his swallowing hasn’t progressed a ton although moving food around his mouth is challenging. He cannot bath himself or get himself dressed. He also cannot sit up from a laying position. Rolling over in bed is doable but with great effort.  

Walking is very slow and he uses a cane all the time or a walker for longer distances. He is very off balance. He can still do stairs with a lot of help keeping him balanced but it is becoming harder. We recently installed a chair lift so he can get up and downstairs safely. 

We have an appointment to start the process for an electric wheelchair on November 3rd and should be getting an electric hospital bed in the next few weeks as well.

I had a virtual call the other week with the ASL association to do a home safety assessment walkthrough of our home and it was super helpful! She gave us tangible recommendations on items that would help keep Dirk safe and navigate our home as his symptoms progress. 

Lyme disease?

It is a very long story I am happy to share if you want to know more but the short version is: At the end of August we went to a naturopathic doctor after hearing a women’s testimony of being diagnosed with ALS and ended up discovering she had Lyme disease, heavy metal toxicity and other various things and saw an associate of a naturopath here in Washington. This woman make a full recovery.  We went to that clinic and his doctor believes that he has Lyme disease, co-infections, heavy metal toxicity and parasites among other things. If this is in addition to ALS, caused ALS or is mimicking ALS, we do not know.  However we DO know that ASL as Lyme is one of the hardest things to treat. We have proceeded with her advice and he has been doing an intense detox since we saw her and will have a follow up appointment in the next few weeks where he will continue with IV detoxing and proceed on with other doctors in their clinic for the next phase of their treatment plan for him. At the moment we have seen no change in his disease progression. 

Fun things lately:

• We moved into our new house in August and we LOVE IT! The view is spectacular and there is more than enough room for us all. We are still adapting here and there to things and have tons of boxes still to unpack but we love it. We are also incredibly thankful for all the help we had from friends and family with the actual move process.
• We are doing homeschool with Adeline starting kindergarten and are having a blast. We are currently doing a space unit study and went to the Science center the other week (Dirk came too and his mom came as his “aid” and pushed him around in a wheelchair for it.) and had so much fun. 
• Dirk and I had a lovely getaway in September to Alderbrook resort together just the two of us.
• We have my brother’s family coming into town at the beginning of November for a few days before Dirk’s surgery which should be a sweet time. 
• We booked a vacation to Seabrook with Dirk’s whole family in December and were able to book an accessible home and are excited for some quality time with the whole clan. 
• Elizabeth turned two on October 2nd and we had a “Two Groovy” party for her with close friends and family and had a hoot!

Prayer Requests/Praises:

• Praise that while I was quoted $14,000 for a new chair lift and up to $9,000 for a used lift including install, that we were able to get a used lift and have it installed for only $3,700!
• Prayers that we can continue to adapt to keep Dirk safe as well as those caring for him safe. 
• Prayers that his PEG feeding tube surgery will go smoothly and he will recovery quickly. 
• Pray his progression would slow.
• Pray that this Lyme diagnosis could potentially be it and we could slow or stop his progression – or even reverse it! 
• Pray for our hearts and spirits. Everyday is hard, but some days are worse than others. And so prayers to keep all our spirits up, but especially Dirk and find little joys throughout the day.

Some recent photos: