How is Patrick Doing, #8? Part II - Mobility, Spacisity and Marijuana

Part II of "How is Patrick doing?" is primarily about our experience with obtaining cannabis to use for some specific symptoms. The symptoms we are trying to manage are anxiety, spasticity and clonus (tremors). Not all patients develop spasticity and clonus (tremors), but they are an ongoing battle for Patrick. We've tried conventional medication, but it just isn't working so we've entered the world of medical marijuana. Marijuana is common topic with ALS patients and we find that many patients use it to combat a variety of symptoms. There are even theories that marijuana slows the progression of ALS.

Marijuana conjures up a lot of images for me. I've talked with people that feel strongly that marijuana can help everything from Alzheimer's to the common cold and on the flip side there are those that think its just a hallucinogenic used by "pot heads." At this point I don't think I would take either of these sides, my suspicion is the truth is somewhere in between. 

Marijuana, Dispensaries and 420 Doctors
Spasticity causes a stiffness in the muscle making it near impossible to relax. For Patrick this happens in his legs, often during high stress times, which further exasperates the moment. Lately, this spasticity is accompanied by tremors (involuntary movement of the legs up and down) together these are a nasty set of symptoms. Recently, this occurred during a transfer which made for a very unsafe moment. 

Patrick has been taking a medication to help control the spasticity, but it just hasn't worked. So, we are looking at the use of medical marijuana, it comes highly recommended for this type of symptom management. We spent the last couple days navigating the world of legal cannabis in California. We started with getting a written recommendation from Patrick's neurologist for the use of marijuana. I wouldn't call the recommendation a "prescription," its just a document that the doctor states why the cannabis is going to be used. 

We, in our naive thinking, took the "recommendation" down to a dispensary, you know like when you get a prescription you head down to the pharmacy. We found out quickly that medical marijuana is a little different. Upon arrival at the dispensary there was a security guard at the door, he immediately told us that the patient must go in alone since we didn't have a "caregiver approval form." This caught me a bit off guard and I tried to explain how difficult that would be for him. The security guard was nice and he explained that although he understood our concern, this is California law. I think at this point he realized that we had no idea what we were doing... So, he asked if we had our approval letter or ID for marijuana purchase. I showed him the recommendation and he said you need to visit a 420 doctor to get an ID.  He gave us the name and a coupon and we headed out on the next leg of the journey.

A funny side note... years back when the grandsons were little, they were sitting in my kitchen having a snack. I asked Anthony, who was in kindergarten at the time, how he felt about Christian, his younger brother, going to preschool. His entire face showed disgust, he looked at me and said "grandma, look at him, just look at him, he can't go to preschool." I looked over at Christian, his face was full of cupcake and he had the biggest goofiest grin. This line of Anthony's has become an ongoing joke with Patrick and I.  So, when we got back in the van Patrick looked at me and said, "look at me grandma, do I look like someone who can go into a Marijuana store alone?" He did make me chuckle.

We got to the 420 doctor and headed in to see about getting the ID. Now, to say there are interesting folks in this place is an understatement. Just to prove my point I'm including

The van parked next to us...

The zombie in the front seat

photos of the van parked across from us. I did a double take when I saw this guy in the window. No, he's not real but I figured out pretty quick that the dude in the backseat was...

I was a bit irritated going in because the handicap spot leads to a sidewalk that wasn't safe for a wheelchair. I don't think that enough energy is put on making sure that disabled people have a clear route into buildings - not just a handicap spot, but a pathway without large bumps, unlevel thresholds and cracks. I pointed out my concern to the clerk who I believe filed it pretty quickly, under "I don't really care." Yes, this just added to my irritation. After hearing about the wait time, we opted for putting in for an appointment the next day, 1-2 hour wait didn't appeal to us.

So, that ended day one... a bit more educated but not accomplishing much. Day two we headed down to our appointment, decided to park on the opposite side of the building eliminating the bumpy sidewalk but not the threshold issue. Because we had an appointment the wait was shorter and within a hour we were meeting with the doctor. Many of the complaints on Yelp for this particular place were that the doctor didn't spend enough time with folks. That was not our experience, the doctor explained the different methods of ingesting marijuana, what he recommended for Patrick and how to measure using the different types. He was quite informative. He couldn't recommend a dispensary but he did say that if you call the place and they answer "Hey" - that's not the place for you. That was kind of funny. 

So we left the doctor with approval in hand and a caregiver ID. We went to the nearby dispensary to see about getting some medication. The guard let us both in with our approval letters. The dispensary was an interesting place, you go into a wait room and they call you back to the "store," I think that's what I'll call it. The person that helped us was a young girl with very little knowledge about what we needed. There are different ingredients in marijuana that provide different benefits depending on your ailment. I guess I thought it would be more like a pharmacy with a pharmacist to help you with medication. Additionally, I assumed that there would be a standard amount or recommended dose. Nope, you really have to do research and even then you start with a low dosage and see how your body reacts. It's all very different than the usual prescription process. 

The store was fascinating although a bit overwhelming. They sell all kinds of stuff filled with marijuana; soda, candy, tortilla chips, oils, salves, etc etc. Fortunately, the ALS clinic and the doctor we met were in agreement on what we needed so we bought a tincture which is an oil you you drop into a beverage.  

I cannot tell you how strange I feel buying marijuana, my images of potheads, getting the munchies and bongs. Yes, I think there are people who use marijuana for legitimate use, but equally I think there are "potheads" in the world. At least, I sure did see a variety of folks the last couple days.

So, we are back from our travels and preparing to use the tincture of marijuana that we got. I'll keep you posted on how well it works, I'm hopeful. We really need to combat these issues of spasticity and tremors, so if it works I'll happily journey back to the dispensary, although I think perhaps a different one, one that doesn't answer the phone "hey.":)

Mobility Issues Continue 
At this point Patrick can no longer do any type of ambulatory movement. He can be pulled into a standing position but his balance is not good and he needs a walker and his chair immediately behind him. This allows for dressing, and going to the bathroom. This is a tremendous help and I'm not looking forward to him not being able to stand. He continues to to control his wheelchair by moving his arm to guide the chair forward/back and turn however, this is becoming more labored. The next step will be for an attendant (Me:)) to control the wheelchair movement. I don't think he's looking forward to this, especially because I've not proven to be very good at driving his chair. Ah, well he's stuck with me...

The lack of mobility creates many related issues: blood clots, constipation and muscle apathy. Movement truly keeps the body healthy and without it creates problems. I know that when I sit for long periods of time my body gets achy and stiff (yeah, I'm feeling my age), so if you sit all day there are bound to be problems. We do physical therapy each night with his arms and hands this helps to combat them becoming stiff and curled. I roll him over from back to side each night to eliminate him laying in one place all night. So we do our best to address issues but there is only so much that can be done.

Three Years...
December marked three years from the date of diagnosis. The progression for us is difficult to measure. We don't see changes every day or every week - it is a much slower decline. However, we know the progression continues and when I read back on the blog posts "How is Patrick Doing" I reflect on the challenges at that time and some seem oh so distant. I've often wondered how we've got here, but I venture clear of the where are we headed as best I can. 

Life continues and time marches on... we will do our best to meet the challenges that come. I'll leave you with a couple photos from the past month...

One of Jake's Favorite Spots

At Farrell's Ice Cream Parlor

All the best to you and yours!