As I talked about above, the ALS walk is only a little more than three months away. I am actually very excited to be participating. It feels good to know I'm trying to do something to help myself and others with ALS. I am particularly excited about the video, inviting you all to join us. I wanted to thank Larry and Christine for putting the final touches on it and getting it up on YouTube.
One question I am frequently asked is "how are you doing?” As I've stated previously, it is not always an easy question for me to answer. I'm hesitant to say "great “because I'm not. I'm also hesitant to say "I feel like crap" because I am making a conscious effort to not be negative. If you were to see me walk or try and maneuver my arms you would know that something was wrong for sure. It wasn't until recently, when I saw a picture of myself, did I realize how noticeable the muscle atrophy in my arms had become. My legs look only slightly better. In my opinion, I'm beginning to look a little like a stick man. I've attached a picture at the end of this post so you can make your own conclusion. Often, as most of you know, my simple answer to the question, how am I doing, is "okay", and except for a few people, I will rarely go into detail. For the rest of you, today's your lucky day because I'm going to give you some insight as to how I feel and show you how you can check anytime you want.
On the upper right-hand column of this blog page there is a tab titled "How Am I Doing ". Underneath that tab is a banner for a website called Patients like Me. This website allows people, who have been diagnosed with life-changing diseases, to share information regarding their condition with other patients who share similar illnesses. The website allows you to chart your condition, symptoms, and treatments as well as provide a forum for discussion with other patients, caregivers and medical professionals. I have gained more useful information from this website in one visit then I have from all of my doctor visits, combined. By clicking on the Patients like Me banner, you will be taken to my profile page. One of the first things you will notice is a picture of Sydney and Emily sitting next to a hot mermaid. Next to the mermaid you'll see a little multicolored man. This little man is a quick indicator of my disease progression. Progression is measured in four separate areas, the head, the chest, the arms, and legs. The color green indicates no disease progression. Yellow indicates minimum disease progression. Orange indicates moderate disease progression and red indicates severe disease progression.
Underneath the little man, you'll notice several charts. The top chart represents my FRS score. FRS stands for Functional Rating Scale. The ALS Functional Rating helps you keep track of your overall condition by measuring symptoms in the four areas I talked about above. There are three questions for each area: bulbar (chewing and swallowing muscles), activities of daily living (arms), mobility (legs), and breathing. The highest rating, one can receive is a 48. Currently, my rating is a 35. You can follow the progression of my score over the past three years by rolling your cursor over the points plotted on the chart. Your FRS score is determined by a self rating scale in 12 different areas of functionality.
The specific questions asked, and my current level of functioning, is as follows:
Speech (bulbar) - Speech is about more than how your voice sounds. It's how well you feel forming words in your mouth.
- Response = Normal speech processes
- Response = Normal
- Response = Normal
- Response = Able to grip pen but unable to write. You can hold a pen, even if it is very difficult, but you are not writing more than to sign your name.
- Response = Can cut most foods, although clumsy and slow; some help needed. You may be able to cut soft meats or fish but you need some help with harder meats.
- Response = Intermittent assistance or substitute methods. You might not need any help to dress but you are now wearing clothes that are easier to get on and off. You might have changed the way you put on your clothes. This includes the situation where your arms are normal but you have to sit to dress due to leg weakness or poor balance. You might be getting occasional help to dress, especially if you have to hurry.
- Response = Somewhat slow and clumsy, but no help needed. There is some difference compared to before you were ill. It takes more effort to turn OR pull up the covers. One activity could be normal but one is awkward.
- Response = Walking with assistance. This would include a cane, walking stick, ankle brace, walker, or wheelchair.
- Response = Need assistance. You REQUIRE the handrail or help in some way. You would not take the flight of stairs without either a handrail or a cane or someone helping you.
- Response = Your breathing is unchanged; it is perfectly normal with all activities compared to before you had ALS symptoms.
- Response = You have no change in your ability to breathe on your back; it is perfectly normal compared to before you had ALS symptoms.
Underneath the FRS scale is my FVC chart. FVC stands for Forced Vital Capacity and is a measurement of lung strength. It measures my ability to breathe independently. As you can see, my score is 88%, which I am told is in the normal range for a man of my age in good health.
Further on down the page you can find a list of my treatments, which includes all prescription drugs, vitamins and supplements, and any other therapies or treatments, I have taken or are currently taking. Additionally, there is a list of the specific symptoms that I am experiencing. You can read those for yourself if you would like. As with above, green indicates no symptoms, yellow indicates a mild symptom; orange indicates a moderate symptom and red indicates a severe symptom.
Here's the picture that I talked about earlier. Let me know what you think.