Bart Trotter’s A.L.S. Page – diagnosis: 7.23.2015
On July 23rd of 2015 I was diagnosed with ALS. I am writing this now for 2 reasons. First, to let everyone know what’s going on when you see me in photos or in person in my power wheelchair. I don’t want any pity, I just want to let people know. I don’t need anything right now, except prayers – that could change in the future. Secondly, I am writing this to make more people aware of this horrible disease. There is no cure, and the prognosis is anything but hopeful. However, I have always been competitive and a fighter and have always had a positive attitude. So, no negativity in my life – everything is going great, a new kind of great – but great just the same. I could not do any of this without the unwavering love and support of my wife and best friend. Denise is a very special person! She is positive even when I don’t make it easy, never complains, and is always there for me 110%. I call her my Ninja Caretaker. Also, my mother has always been very supportive and a positive influence! She is helping us more than we could possibly imagine and is aware of, and a partner in our challenge. So, don’t feel sorry for us – because; together, with God, we got this! We are going to enjoy every bit of each day, only God knows our path. Though I can’t play music anymore, I still love to go hear good live music! So there is no telling where you might see us. See ya’ down the trail! – PEACE
Since I wrote this in May of 2016, much has happened,
this is where the “Travelling A.L.S. Circus” begins! – Bwahaha!
This is my A.L.S. story!
I was diagnosed with ALS 2.5 years ago. What I haven’t shared is at my first diagnosis I was told I had bulbar onset, very aggressive, and I had about 6 months to live and to go home and make my plans!
Well I walked out saying, “Wow, I thought it was going to be bad, but at least I don’t have cancer!”
I had the diagnosis confirmed at my first ALS clinic. Oh joy, but this time I was told that I had bulbar onset, very aggressive, but my Dr. explained, every case is unique, and if you have seen one person with ALS you have seen one person with ALS. No two cases are alike!
If you know me, you know I am a FIGHTER! I won’t quit till I beat this “thang”!
So from day one, I said, we are NOT going to come at this with sadness and negativity! We are facing this head on with Faith and Laughter! We have maintained this attitude for the past two and a half years, and will continue!
At this time, there was ONE drug Riluzole (Rilutek) for the treatment of ALS. It was supposed to increase your lifespan by up to two months, had side effects, and frankly, when I asked my neurologist if he would take it, if it were him – he said no, so, I declined taking it.
I am very blessed to have my wife Denise – the original Ninja Caregiver!!! She has single handily got me the best care possible by not taking NO for an answer! If a doctor or provider said NO, she questioned why until she got what we wanted or called another Dr. or provider until we got the service or treatment we wanted. i.e. Speech device, physical therapy, a few clinical trials, any equipment we needed, the top of the line Power Wheelchair – Permobil F5VS (thanks Mom for the vertical standing portion!!! $10,000), and now RADICAVA!!! The first drug for the treatment of ALS in over 22 years! Denise might be small in size, but she is MIGHTY! My mother, Denise’s parents, and a few more family and close friends have supported us. Thanks Y’all!!!
It was during this time I experienced several life changing events:
- I just about completely lost my voice. (Was prescribed Neudexta for “Seudo Bulbar Affect” – it brought my voice back!)
- I fell and broke my wrist, requiring surgery, a plate and seven screws! (Any major trauma to an ALS patient is a major setback!)
- I pretty much gave up walking, and depended on my scooter, then my power wheelchair for mobility.
Then enter the first drug for the treatment of ALS in 22 years! RADICAVA!!!
I was chair-bound or bed-bound at this point! Enter RADICAVA!!!
Round One – Radicava
I just finished my first round of Radicava, and I am seeing great results! After day 2, I felt like my feet were more grounded! After day 4, I sat up, more like popped up from the sink, while brushing my teeth, without using my hands to help raise me up! After day 11, I stood up without using something to hold on to, and had the core strength to sit down without plopping!!! I also grabbed my wheelchair and did 1 legged squats on both legs! I haven’t been able to do any of these things 1 year ago!!
I know Radicava is only supposed to slow the progression, however we have documented proof of my progress. I went to my ALS clinic right before I started treatment to get a baseline on my condition. Then I went through another examination at Paragon Infusion Center in Austin to assess my condition before treatment. We have documented my results/progress both in writing and video!!!
Well folks, I believe that just as individual as the symptoms are, so are the benefits of Radicava! Hell, no two doctors will assess your condition the same way! Which is why it takes so long for many to be diagnosed. Heck, after living with the disease and really researching it, you will have more knowledge than most of the doctors you will see. That’s sad, but true.
The only restriction for getting this drug is that you have a diagnosis of ALS, period! If anyone tells you different, they are lying! Go find a doctor to write your prescription, any doctor, it doesn’t have to be a neurologist. Then get with Searchlight ASAP! They are patient advocates that will help you find funding, as well as support. I have Medicare and no secondary. Medicare paid 80% and Searchlight helped get us a grant for the 20%!!!
If I could put it in steps, I would say:
1. Get your prescription.
2. Contact Searchlight.
3. Find an infusion center to administer the drug.
Whatever you do, don’t take NO for an answer!!! If you want it, then get it!!! There are ways to get Radicava!
Round Two – Radicava
First off, I have to say – “I miss the nurses and staff at Paragon Infusion Center”! However, I don’t miss getting up early, driving to Austin and back, and feeling whupped by the time we got back home! It wasn’t the 1.5 hour drive there and 1.5 hour drive back to Killeen. It was the 1.5 hour drive there and 1.5 hour drive back to Killeen on I-35!
Home Infusion is definately the way to go!
For my home infusions, we still used Paragon Infusion Center’s pharmacy, and we were introduced to Interim Home Healthcare Services in our home in Killeen, TX. My nurse Tami showed up, and we were friends at first site! She got our IV started, and trained Denise how to give me my infusions! NO, Denise doesn’t get to stick me. Do you think I’m crazy? Tami now comes to check in on us, and start a new IV when needed. She’s awesome! We mentioned to Tami we had been having a hard time finding a Physical Therapist who knew anything about ALS, or was able to think outside the box.
That’s when Tami ordered for physical therapy through Interim Home Health Care as well. Within a couple of days, Debbie showed up, and my life has changed for the better! She is AWESOME!!! She knows how to treat someone with ALS!
Debbie took the time to find out about me. She listened, and used things I was interested in to perform my physical therapy – BRILLIANT!!! She was also very impressed with the improvents I had made since starting my Radicava infusions! She learned music was a big part of my life, and incorporated it into my therapy. At first we worked on stretching, then standing, then standing and playing the bass!!! WOW! Music again? That would be awesome! I can now stand and play bass through some of the songs off my albums. I never thought music would ever be a part of my life again, as far as jamming or anything. Now, I feel like I am definitely seeing signs of a slow reversal of the symptoms of ALS. Not any one thing is overwhelming by any means, but just as the disease came on slowly taking things away, I feel things coming back. Not coming back as full on reversal, but I feel myself easing toward a better quality of life!
Round Three – Radicava
Round Three brought even more improvements! Debbie even worked more majic! This time she told Denise that she was gonna get me on the bed on all fours to do my stretches! We both thought “Good Luck”. But, by gosh she got me up on the bed doing my own stretches!
Still working on my bass playing, and that’s really improving.
Debbie wasn’t through yet! She noticed that since our dog Scooter passed away, we got a new puppy – Loulou. She said she was going to get me down in the floor to play with Loulou! Remember, I have Bulbar Onset, I’ve been diagnosed for 2.5 years, my speech and my legs are the worst affected – and Debbie thinks I am going to get on the floor on purpose? I’ve been trying like hell to not end up on the floor for the last 2.5 years! Haha! She explained that we were going to get down and back up in a controlled manner, not the way I did it when I broke my arm. Well, again she amazed me. She taught me how to get down on the floor, stretch, roll around, play with Loulou, and get back up all by myself. AMAZING!!!
Then, over the Thanksgiving Holiday, I got my brother-in-law and father-in-law to cut me a piece of dowel rod about “Fiddle” length, so I could practice holding my fiddle (without dropping a real one).
Well, by Christmas Eve, we got our Christmas miracle! Debbie had me working on standing and playing, but I still hadn’t been able to hold my fiddle, let alone play it. Well, on Christmas Eve my son Patrick was playing his guitar and singing some songs and I finally told him to go get my fiddle! I got it out and surprisingly, I could hold it. Next came trying to hold the fiddle with one hand, the bow with the other, and try to make some noise. I could, so I noodled a bit to get some kind of comfortable. Then, feeling like I was a “bear gripping a tree limb” on an instrument I used to master, I PLAYED FADED LOVE!!! (See Video 7 below).
Now I am about to start Round 4 of my Radicava Infusions, and I can’t wait to see what else I will be able to do!!!
Round Four – Radicava
My fourth round of Radicava brought even more improvements! In the video of me playing Faded Love (video 7 – below), I could not reach my low string – (the G – STRING) – I can now! That’s a major accomplishment for me! Now if I can get my “Pinkie” firing, I will be good to go!
All I can say is the Radicava and “Debbie’s” style of Physical Therapy are really working!!! The last round, Debbie had me getting down in the floor, stretching, and getting back up, using my power wheelchair. This round, I was getting in the floor and getting up and into different furniture! I now feel confident, that if I fell, I could get back up! Then she gave me some standing balance exercises, and suggested building up stamina using my walker.
Then, late one night, I told Denise to go help me get on her treadmill. Much to her better judgement, she knew I was gonna get on there anyway – so she might as well be there to control matters. I totally expected a “Hold my beer, and watch this” moment, but to my surprise, I WALKED ON A TREADMILL!!! Videos to come!!!
**The Following Videos represent things I COULD NOT do before Radicava Infusions!**
Video 1 – Radicava Round 1 Day 7
Video 2 – Radicava Round 1 Day 11
Video 3 – Radicava Round 2 Day 4
Video 4 – Radicava Round 2 Day 7
Video 5 – Radicava Round 3 Day 4
Video 6 – Radicava Round 3 Day 7
Video 7 – Radicava – December 24th Our Christmas Miracle! (4 days before Round 4)