Post 7 - Looking A Little Thin

First some exciting news. For those of you that do not know yet, we have officially launched our walk for a cure campaign. Our team, the ALS Wing Fighters, will be walking in the greater Philadelphia ALS walk on November 6 at Citizens Bank Park (home of the Phillies) in Philadelphia.  Please check out the invitation video that I posted to the blog on Monday, July 26.  Also, please consider joining our team and walking with us to raise awareness  (and funds, of course) and support for ALS patients and their families. You can join our team, make a donation, or both by clicking on the following link: Philadelphia walk-ALS Wing Fighters. Thanks for your support.

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

Salivation - Salivation is about how much watery saliva you have in your mouth.

• Response = Normal

Swallowing - Ability to chew and swallow compared to before you had ALS

• Response = Normal

Handwriting - Handwriting is about how you hold the pen (with your hand that was dominant prior to ALS onset) and how the words look.

• 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.

Cutting food and handling utensils

• 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.

Dressing and hygiene

• 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.

Turning in bed - This is about rolling over in bed and pulling up the covers, not your ability to get in or out of bed.

• 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.

Walking

• Response = Walking with assistance. This would include a cane, walking stick, ankle brace, walker, or wheelchair.

Climbing stairs

• 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.

Dyspnea - Dyspnea is about your level of breathing difficulty during normal activities.

• Response = Your breathing is unchanged; it is perfectly normal with all activities compared to before you had ALS symptoms.

Orthopnea - Orthopnea is about how your breathing on your back might be different than while sitting or standing.

• Response = You have no change in your ability to breathe on your back; it is perfectly normal compared to before you had ALS symptoms.

Respiratory insufficiency - Respiratory insufficiency is about how dependent you are on mechanical help for breathing, mostly from BiPAP

• Response = None. You are not using BiPAP to help you breath. And, your physician has not recommended it to you.

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.

Typically, I will update my status in conjunction with my clinical visits every three months. My next scheduled visit is on October 14th, check back then, if you are interested in how I'm doing and you're looking for more information then my generic “okay” answer.

Here's the picture that I talked about earlier. Let me know what you think.

Told you I was looking thin!