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| Patrick and Dr. Katz |
The Forbes Norris MDA/ALS Research and Treatment Center is a multi-disciplinary clinic, sort of a one-stop shop for ALS patients. Typically, Patrick goes to clinic quarterly and the appointments last 2-3 hours depending on his needs. At his appointments we see a neurologist, RN, speech therapist, respiratory therapist, and physical therapist, to name a few. These professionals are experts in the field of ALS, so they are knowledgeable about new drugs, trials and medical equipment/software.
When we got the initial diagnosis, I think the hardest thing about going to the doctor was that there was no treatment plan to cure or control the disease. We are told in our society that when you have an illness you go to the doctor to get treated. Unfortunately, there is no "treatment" for ALS - no chemotherapy, no magical drugs and no surgery. So, you're thinking why go to clinic... Frankly, that's an easy one, they provide symptom management, information on studies, cutting edge drugs and medical equipment and have the latest information. Essentially they work to ensure the highest quality of life for ALS patients.
I've said it before and it really is true, the ALS world is like one big family. At clinic we generally know the other patients in the waiting room and there is collaboration between everyone in the halls, rooms etc. - very hard to explain but it has a life of its own. In addition to patients and medical staff, there are ALS Association staff and medical equipment specialists at clinic. The doctors, nurses and therapists that work in the field are also part of our ALS family. I really can't image what it would be like to spend your professional life working on a disease that has no cure, but most of the Forbes Norris staff have been doing this for years. These folks attend the ALS Walks, serve on the ALS Association boards and committees, and provide information at support groups, so we see them in a variety places not just during clinic appointments. They are a blessing to ALS patients and their families.
In April, we attended the ALS Association Symposium. This day long event highlighted research, issues and policy legislation related to ALS, it was attended by patients, caregivers and medical professionals alike. Some of the most renowned researchers across the country did presentations. It was an interesting day, this disease might not have a cure today, but there is hope for the future.
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| Patrick and Bob |
A typical day at clinic happens like this; our first meeting is with Bob Osborn, the registered nurse who manages our case. We know Bob well, he and Patrick served on the ALS Association Board together. Bob goes through the functional rating scale questions to track the disease progression, checks to see what concerns or issues we are facing, and makes certain that our needs are being met. He then determines which professionals we will see based on our current needs. At every appointment we see Bob and Dr. Jonathan Katz the neurologist, all the other staff are available if we have a need. We stay in the same room and the professional staff come in and out. I can not imagine what our life would be like if we had to make individual appointments for each professional. Frankly, it would be overwhelming and we wouldn't have the benefit of the expertise and experience of the clinic staff.
So, back to my original thought... I'm not really looking forward to Friday's appointment because we have issues to discuss. Sometimes when we attend clinic the progression of the disease is such that there really isn't much to talk about, but that's not this next appointment. There are three main issues to address - wheelchair controls, getting a feeding tube and jaw problems.
We must begin the process of having Patrick's power chair controls changed from hand to head control. His hand really is struggling to control his chair, so we have a couple options - head control or attendant control. At this junction it is likely we will adopt both head and attendant so that he can control his chair and I can take over if necessary. Patrick tried out the head control features last month and they won't be easy. My hope is he doesn't run over the dog or straight into a wall.
We've been adapting to mobility issues for the past 3 1/2 years but the past 6 months we have been faced with challenges in the "bulbar" region, essentially speech, chewing and swallowing. We avoid some food items, cut smaller bites and he eats very slowly. But, there continues to be decline and ultimately he will no longer be able to eat in the "normal" fashion. For most ALS patients, initially a feeding tube is used to supplement eating, but over time it will replace normal eating. So we start the process of getting the surgery scheduled to install a feeding tube.
The final item of discussion is that Patrick did something to his jaw during one of his exaggerated yawns. Not really sure what he did, but it causes him a lot of discomfort and adds to his chewing difficulties. Hopefully they can guide us on what can be done to fix this and/or refer us to the appropriate person to see.
Adapting to change is what ALS is all about. I guess this time I'm a little tired. The mobility changes we've overcome are so challenging that I really thought that in comparison anything else would be simple. Nope, that's not the case - all ALS changes are difficult and adapting is not easy. I often hear a very high pitched voice in my head that says, "Oh silly girl..." she's quite patronizing.
So, we head to clinic on Friday set with our three items of discussion. I wish I could say that maybe we'll get some good news, but the best news an ALS patient can receive is that there appears to be no change since last appointment. We know there have been changes, so that won't be true this time. On the positive side we will be able to see the neurologist, speech therapist, physical therapist and nurse all in one afternoon. They will understand the issues, provide guidance and get our needs met - this I'm confident of.
But hey, on a positive note, Comic Con is this weekend and we've got tickets for Sunday - so, we'll distract ourselves with a little bit of Science Fiction after the appointment. To my SciFi friends, "Live Long and Prosper" or if you prefer "May the Force be With you." Here are some pictures from last year's Comic Con...
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| Us at Comic Con - 2015 |
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| Kevin Conroy, "The Voice of Batman" and Caitlin |
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| Caitlin, Batman and Patrick |
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