Busy busy busy

Sorry I haven’t been on for a while but I’ve been extremely busy. I got Lita off on her trip to Ireland a couple of weeks ago. My oldest daughter and her boyfriend came into town to stay with me for that first weekend. My son Taylor and daughter Stephanie along with Taylor’s girlfriend Nina were hanging out with me to it was an awesome time and hearing them all laugh and joke around in our house was incredible


So I wanted to talk about the costs of this disease. The physical costs are different for everyone I suppose. Not only are they different but they happen at different intervals. My physical costs have accumulated quite quickly since my diagnosis. The two major physical issues I have at this point are mobility and the loss of the effectiveness of my diaphragm. My mobility issues began with drop foot on my left side. That has now progressed to a bit of rigidity in my left foot with my toes being more pointed. That coupled with the loss of core muscles gives me what I lovingly call the John Wayne walk. The loss of core muscles make it quite difficult for me to get up from a prone position. I’m sure it looks quite comical when I try to get out of bed. I kick my legs and try to use what mass I have left in my lower body to bring my torso upright on the side of the bed. Oh well, so what if it looks funny, it gets the job done for now. 🙂 As far as the diaphragm thing, well that makes me look like a fish gulping for air when I do too much during the day. Got to tell you, my respiratory therapist has become my hero. His name is Michael and I told him he needs a big S on his chest. He’s passionate about what he does and I appreciate that.

So now I can rant about the financial cost associated with this disease. Now I’m sure everyone’s financial costs may be a little different. And I hope no one takes this in the sense that I’m whining. Understand that I have a lot of time to think during the day and I do a fair share of it. First off let me say that I have insurance. I got a policy that would protect me if I was ever hospitalized and needed a major surgery. I think they call it a catastrophic illness policy. With my family history, it was important that I cover myself for things like heart problems. And I did. Unfortunately my policy doesn’t consider ALS at as a catastrophic illness. It also doesn’t cover oxygen. And even though my unit does not provide me oxygen it provides me air, it is not covered. So that’s $1800 a month. I am on a prescription drug called Rilutek. Its purpose is to slow down the progression of the disease. Lita and I feel that it is working. So with that said it’s worth whatever it costs. Our pharmacy does not stock it so they had to order it in. When we went to pick it up the pharmacist asked if we knew how much it costs. We didn’t of course but we said yes anyway. I am on the highest dosage which is two pills every day. Each bottle holds 60 pills. Each bottle is $2500. Now Lucky for us our insurance does pick up a portion of that cost. We only have to pay just under a thousand dollars for the bottle. So those are the two big cost for us right now. On top of that we have the incidentals such as a walker, a wheelchair, assorted padded seats for me to sit on, and other small items. So when I’m sitting around thinking my thoughts these are some of the things that come to mind. What do the people do that don’t have insurance and they don’t have the means of which to afford themselves these things. I know about the ALS lending closet and places that donate certain items. But I can’t help but think there are folks out there that see these costs and give up. And that is unacceptable. There are many unfortunate sides to this disease. The fact that there are 30,000 cases at any given time in North America I believe creates some of the problem with high costs. A disease like cancer touches many more lives and therefore gets much more attention. For instance last month was ALS awareness month, but my local television station only ran one brief piece about a young fellow here that is living with ALS. But every morning and every day at lunchtime and every evening they had a piece on cancer. I’m not saying cancer is not a deserving topic. But it was ALS awareness month. Well I’m running out of smoke. Just talking to my computer wears me out some days. But no worries, I’ll be at it again tomorrow. Make sure you check back, and be sure to pass along this blog site to anyone you think would be interested. Thanks

Awesome Sunday

Sunday was a great day. I got to spend it at a barbecue at my sisters house with lots of family there. My wife my son my brother my sister and uncles nieces nephews cousin second cousins third cousins and friends. it was awesome. I had not seen my one cousin in probably 30 years. And had never met my second cousins or third cousins. Family rocks. The downside is I spent seven and a half hours in my wheelchair. Yesterday I paid the price. I felt as though someone had beat me with a 2 x 4. it was still worth it. I want to say thanks to all of you that are following my blog, it means a lot to me. My wife Lita leaves on Thursday for a trip to Ireland that she’s been planning for over a year. I have many qualified babysitters that will be watching over me while she’s away. My best friend, Scott Prophett, will be the head sitter. Other friends are planning on coming in from out-of-town. We’re planning on a Lowcountry boil for one evening when the majority of them are here. Oh yeah then there’s the Hooters girls (wink wink ).

I’ve made a few observations about this disease so far. About the costs. Both physically and financially. But I’m going to save those for tomorrow’s blog . Be sure to pass along the blog information to anyone you feel would be interested. Thanks again and have a great day.

So here’s how I got where I’m at

Back in October 2012 I started experiencing muscle twitches in my left bicep. I didn’t think much of it. By December the twitches had moved into my abdominals also and were a little more noticeable. At the end of January Lita and I joined 14 other family members on a cruise to celebrate my father-in-law’s 80th birthday. Upon returning I went to see my physician to talk to him about what I was experiencing. He did a few tests and showed a bit of concern and recommended I see a neurologist. It took a few weeks to get an appointment but I finally got in. After two visits and several tests that Dr. recommended I go to Shands in Gainesville for a second opinion. Luckily I have a family member that is doing his residency there and with his help got into see the head of the neurology department. On April 18 I received my diagnosis. I had ALS. The following week I went to USF to the ALS clinic. The third neurologist concured. So since February I progressed from muscle twitches or fasciculations to difficulty with mobility, and breathing. I am on a drug called Rilutek which hopefully will slow the disease down. For the past month I’ve been using a ventilator at night to help me sleep as it was difficult to breathe while laying down. While standing or sitting up my diaphragm is working at about 78%. While lying down it’s only working at about 36%. I travel around the house using a roll later walker but when I go out I sit in a wheelchair and Lita pushes me around. Yesterday we started shopping for a power chair. So that’s where I’m at. I will try to blog each day with my thoughts and an update with what’s going on with me. the purpose for this blog is to let me vent along with letting others comment. So if you have something to say let’s hear it. I want everyone to know that I have good days and bad days so I make no promises as to what I might have to offer. I’m sure as time goes by you may learn something about me you didn’t know. I may learn something also.