Yesterday I went to Emory for my Validation of Biomarkers study in ALS. It was also the first time being filmed for the documentary at Emory. Matt Ruggles was filming and I barely remember seeing him there once we were in the room. When we were led to the small exam room, I at first thought it might be difficult having a camera man in there but he seemed to blend into the wall and was able to get footage from various angles while not getting in anyone’s way. I had to ask my husband later where he was at certain points during the visit, that’s how transparent he made himself. After the study visit and filming was over, I had the pleasure of meeting Matt’s wife, Lauren. She is knowledgeable about ALS which is always nice and we had nice conversation about other things as well. I feel like I made a new friend and supporter of what I’m doing. She is supportive of this documentary that will span the entire length of my ALS journey. That means a lot and reinforces the feeling Tony and I both have that the right production company is documenting this disease that has changed our lives so drastically.
This was my third study appointment and this is how it goes: When we get to the right floor, Tony calls Latoya Shaw, the study coordinator, and she meets us there. We all greet each other with hugs. It’s easy to get close with the staff when dealing with ALS. There’s a comfort for me in being around people who know and see ALS every day. We met Latoya the first time I was at Emory for the third opinion of my diagnosis. She is also the study coordinator for the Family Studies for Sporadic ALS. My Mother and I began our part for that study that first day by giving blood samples. There is also a fairly lengthy and in-depth questionnaire we took home to complete. My sister and Father had everything sent to them by mail to complete. They took it to their PCP for the blood sample and mailed it back to Emory.
That explains our connection with Latoya. We have known her since our first day and she always promptly answers any calls, and keeps communication open. She explains everything well and never has us feeling rushed.
This is how an average study day goes: It starts with her asking me about changes since first noticing ALS symptoms which she applies a number to.
Then she says 5 words that I’m asked to immediately repeat. She does this twice using the same 5 words. Then later on in the test I’m asked to repeat those 5 words. I usually miss something. I missed one word yesterday. It was cup.
Then starting with 3 numbers and going up to seven, she says them and I am to repeat them backwards to her. This goes up to seven numbers. I’ve always made it through all seven numbers. Yay!
Then she gives me a letter. I have one minute to come up with words starting with that letter. It can’t be a number or a proper noun. She writes them down, and it’s counted how many I come up with In 15 second increments. I think I’ve always done well with this one. She gave me the letter F. Ok, it’s embarrassing but the first thing that comes to my mind is fuck. I just said it early on because if I don’t that word is at the forefront of my mind and distracting me from thinking of other words so I said it just so I can move on. It’s embarrassing because I feel it gives the impression I’m just vulgar and also my Mother is sitting in there. I want to do well so I say it on move.
Then I’m asked to count out the alphabet. Example, say 1a 2b 3c and on through all 26 letters, number first. The first time it was, I think W that I skipped. The 2nd time I made it all the way through without a mistake. This time I think it was the letter U that messed me up. I continued on. I should maybe practice this and just have it down, for some reason this one makes me the most nervous. I’m not sure why. I think it’s because if you mess up real early on it’s harder to finish correctly, meaning I could fail it.
She takes my blood pressure. It’s always within a healthy range. Yesterday it was a little high, but nothing to be concerned about, especially since it was the first time being high. I think it was the number/alphabet that had me nervous honestly and maybe a little about the lumbar puncture.
So when we’re finished with cognitive testing It’s time to let the blood run. She takes 11 vials of blood. During this study you are asked for a one time extra 6 vials equaling 17 vials. I got that out of the way on my second visit. I have to tell you Latoya is the best person I’ve ever had draw my blood. This isn’t going from a single experience. She took it that very first day and has always been the one for everything since. She’s never had to attempt twice and there is never any bruising. That’s rare for me. Yesterday I even asked if the needle was in (I don’t watch) and it had been in for several seconds with almost one vial finished. That says a lot, anyone scared of needles or with hard to find veins I’m sure can relate. She’s so skilled at it that the blood draw isn’t something I really dread.
After the blood work, it’s time for strength testing. She uses a device called a Hand Held Dynamometry to test extension and flexion strength in my arms and legs from shoulder to fingers and hips to feet. Some examples of what she does: holding my leg up while sitting and resisting the force used to push down, similar to when a neurologist makes a fist and asks you to resist the force. They know by feel the weakness but the dynamometry gives the amount of force you can resist in pounds, making it easier to correctly monitor and follow the progression. Fingers are tested by me spreading them out and resisting my index finger from being pushed in toward other fingers. Testing in my wrists by having forearm on flat surface and hands held up resisting having them pushed down, and similar in ankles.
The last study visit, I went in and said I didn’t feel like I had lost any strength. I was having a good ALS day. I should have known better and I think I did deep down, but some days I just feel like I’m stronger than I really am. I think it’s mainly on days I don’t have a lot of spasticity or cramping. I was reminded that day when the results did show loss of strength of how sneaky ALS is. Some visits may show more or less loss than the last but ALS doesn’t do much sleeping on the job, or take vacations. It works continuously and diligently.
After that is complete, it’s time for the Lumbar Puncture. Dr. Fournier performed the procedure yesterday. Dr. Fournier is very kind and patient. I also met her very early on and she has performed two of my lumbar punctures. She, like Dr. Glass is always willing to patiently answer any questions. Never showing a hint of frustration, even on the questions you know she hears very often. You would think she’s never been asked. Yesterday she stayed with me after the procedure while Lying on my back until I was OK to leave. In simple terms I’ll describe something I like best about Dr. Fournier and Dr. Glass. When they walk into your room, you see a person coming in, not an ego. You see and feel a person who is there to support you and is passionate about what they’re doing. They will answer my questions honestly and sincerely. That’s how I personally like it.
Back to the lumbar puncture, Dr. Fournier does it in a different way than Dr. Glass. She prefers for me to sit up and lean forward with my head rested on pillows in front of me. Dr. Glass prefers for me to be lying on my side. After having experienced both ways, I myself have no preference. Well I guess I do. I want it performed the way the doctor performing the procedure prefers to do it. I know with both Dr. Glass and Dr. Fournier I’m in very good hands.
Yesterday, after two shots to numb the area, she began and stopped for a third numbing shot. They make sure you’re as comfortable as possible. There is no feeling of being rushed through anything, and you’re reminded if it’s too painful, there is nothing wrong with stopping. I would be upset with myself if I left there unable to complete, but I also know I would sense no disappointment from them if I couldn’t finish. I feel it’s genuine when told my comfort comes first. That is helpful, and one of the many reasons I’m so happy to be an Emory patient.
After the lumbar Puncture, Latoya has to rush out with the collected spinal fluid to place it where it will be preserved correctly. I lay on my back until I feel ready to go. During this time Dr. Fournier stayed with me and we talked about how this study will teach researchers a lot, we also had general chat. Again I felt like I was speaking with a nice sincere person, not an ego. When I felt ready, she did a little limb testing for spasticity and gave the OK to leave and reminded us to not hesitate calling if I need anything or have questions. I’ve had a little back soreness today but nothing two ibuprofens and a heating pad doesn’t take care of.
So that’s what it’s like to be in the Validation of Biomarker study for me. I’m proud to be a part of it. I believe it will give researchers very important information. The possibility of there being a blood test to confirm this disease and a blood test to tell whether or not a particular treatment is working for an individual is a very big deal in ALS and I’m happy to know I’m a small part of that happening. I hold absolutely no hard feelings for people who don’t want to participate in research. Everybody has the right to deal with this on their own terms. This is what’s right for me. It brings me comfort at times to know I play a small little part in future treatment and hopefully the demise of ALS.
There was something else during the study yesterday I had planned to write about, but this is lengthy, so I’ll save it for the next post.
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Until next time, take care,