How is Patrick Doing #7

It's been six months since the last "how is Patrick doing?" blog. Over this period there has been a continued decline in Patrick's mobility and speech. We are in the midst of change due to these declines and working to adapt and create new routines. Sometimes the difficulty is psychological not physical, but generally it's a combination of both. It's astonishing to me that sometimes the smallest changes can cause the most difficult adjustments. This has been the case recently with the acknowledgment that even a few steps is becoming too much for Patrick to accomplish.

Mobility
Patrick's mobility is declining and it is requiring some significant changes to his routine. We are fortunate that he has been able to stand and take a few steps for this long. This made transfers between chair to bed and chair to chair fairly easy. However, even these few steps are now becoming difficult and over the past few months we began the task of modifying our routine to include the use of a Hoyer lift.

The Hoyer Lift

I think we've been avoiding using the lift for a variety of reasons. For me, it's an increase in the tasks to be completed, a new piece of equipment to learn and a reflection on where we are in this journey. We've known that we needed to adjust our routine, but actually starting to make these changes is difficult - that's the psychological part. So, to delay using the Hoyer lift, we purchased a Beasy Board which allows the person to transfer by sliding on a board from surface to surface. We tried it once and Patrick wound up on the floor - it probably wasn't a good choice for us. I realized after lifting him off the floor with the Hoyer lift that perhaps it is the better choice for transfers.

If you aren't familiar with the Hoyer lift, here is a picture. It's a pretty basic concept and has been around for a number of years. You can purchase a variety of slings to use for different needs and so far the sling recommended to us has worked fine.

These changes always come with stress and adjustment. I wish I could say that I always manage things well, but I have bad moments - moments of anger and frustration. So this month has not been without it's tears and four letter words. Patrick retains his sense of humor and seems to try to make light of the situations at hand. We are adjusting and routines are being adapted to meet the new challenges. It's amazing to me how valuable being able to walk just a few steps can be and I mourn this loss. Some good advice that was given to us when we were remodeling our bathroom is to change the carpet in the bedroom to match the bathroom to make rolling the Hoyer lift easier. I'm so glad we took this advice, it is doubtful I could even move the lift on carpet.

Back in the late 90's there was a "mock" commencement speech written by Mary Schmich that was later put to music called "Everybody is Free (to wear sunscreen) - I really liked it in my 30's and now that I'm "middle-aged" I appreciate it all the more. It's really worth a read, here is the stanza I've thought of a lot lately:

Enjoy your body, use it every way you can
Don't be afraid of it or what other people think of it
It's the greatest instrument you'll ever own

It is truly remarkable how the human body works and such a loss when things don't work right. So I agree, it is the greatest instrument you'll ever own.

Speech
Likely the most significant change that you would notice in Patrick over the past few months is his speech. It is slower and more difficult to understand. This is tremendously frustrating for Patrick and although most of my stress over the past couple months involves the Hoyer lift, his stress is more connected with his ability to effectively communicate.

As with all ALS symptoms when he's tired or stressed he becomes more symptomatic. So in the morning his speech is probably 90% understandable but late in the day when he's fatigued it is more in the 70% range. If I were to describe how he sounds he's quite a bit more nasally and slower. In society today we talk very quickly and anticipate what is going to be said by the speaker. I think this compounds his challenges in communicating. I see these traits in myself and when I'm thinking about them consciously, I try to pause and relax to hear what is being said. I'd like to say that I understand him best, but I think that award would be given to Caitlin. She often knows what he says even when I'm not sure. Caitlin is an introvert so I guess that doesn't mean she's not listening, instead perhaps she hears more than most.



Patrick and Mary Johnson, Speech Therapist

We are looking at various communication devices for use in the future. Mary Johnson, an ALS Speech Therapist, is working with Patrick to consider options. She is quite knowledgeable and very open to different technologies. The ALS Association received a speech grant and with the funds has been holding seminars for ALS patients to introduce them to different devices. At one of these workshops, Patrick was able to try a gyro mouse and borrow it for a period of time at home to see if it worked for him. The gyro mouse connects to your glasses and allows you to move the computer mouse by head movement. This has made working on the computer easier which allows him to surf the web, answer emails and use a computer speech device (when the time comes).

The good news this month is that the Steve Gleason Act was passed by both houses of Congress and is headed to the President's desk where he is expect to sign it. This act allows access to communication devices through Medicare and Medicaid for ALS patients and others with neurological disorders. It is wonderful to see such an important bill move quickly through the Congress with bi-partisan support! This will open options for Patrick and many other ALS patients that are having speech difficulties.

Blood Clots and ERs
With limited mobility issues arise, we spent an evening in the Emergency Room (ER) last week when Patrick complained about pain in his arm that initially he thought was just a bruise. We couldn't figure out how he might have bruised it, but with our recent Hoyer Lift usage I thought it was possible that it happened during one of his transfers. Over the next couple days, the pain moved throughout his lower arm and it began to swell. Seeing that it was Saturday, we headed to Sutter Urgent Care to get it checked out. They were very quick to see him, but recommended that he go to the ER because he needed an ultrasound and blood draw to rule out the likely cause of a blood clot and they could not provide those services. The ER is one of my least favorite places, but we all spend time there sooner or later. A suggestion when you head to the ER - take a list of all the medications the patient is on and their daily dosage. I must have given this list to three different people in the ER, fortunately I made them return the original.

We wound up spending about four hours in the ER - which honestly isn't bad. There were others that were in the waiting room when we arrived and were still there when we left. The outcome of the tests was that Patrick had a superficial blood clot in his arm. There was some discussion about whether or not to put him on a blood thinner or just aspirin to get rid of the clot. Apparently, blood clots are not common in the ER (according to the doctor) so he spent a considerable amount of time discussing options and trying to decide what to recommend.

We left with a number of prescriptions including one for a blood thinner medication. The next morning I took the prescriptions to Walgreens (Foothills and Baseline). When I returned to pick up the medication I was asked if I wanted to speak with the pharmacist - I said "no, I'm good," but Jim Miller, the Pharmacist came rushing out to speak to me. He was concerned about the exceptionally high dosage of the blood thinner medication and wanted me to speak with the doctor for clarification. We discussed the medication with Patrick's regular doctor, Dr. Kevin Fujikawa (highly recommend) and he agreed with the pharmacist that the dosage was high for a superficial clot. This is not the first time the pharmacist at Walgreen's has questioned a prescription and he was correct both times. When you take a lot of different medications it's nice to know that the pharmacist spends time reviewing and making sure they are correct.

Patrick did a bit of research on the web about ALS and blood clots. He found that due to lack of mobility, blood clots are common in ALS patients. They can be quite serious if they are in a deep vein. So, Patrick will be taking a daily aspirin to help combat this problem in the future. It reminds me that we are built to move and there are problems when the body becomes less mobile. I'm sure there will be more of these challenges ahead but hopefully we are smarter - at least about blood clots.

Hope you are well and enjoying the summer. Patrick and Jake take the lift down together each morning... - it always gives me a chuckle...

Jake Getting on the Lift

Jake Curled in the Corner