Friday, March 13, 2009

Reader comments and answers

===If you are looking for my FDA related post, please scroll down...===

Hi All, I sometimes receive comments related to this blog via email. When I do this and there's some potential to help multiple people I ask the person that emailed me if I can post their note to the blog and answer their question publicly so that others might benefit. Here is one such note from a Mom caregiver.
I, for one, am ALWAYS looking for more that Bill writes. It's amazing how he says what we are thinking, and puts in writing what REALLY goes on at home. Thank you so much, Bill.
Does anyone have ideas for steps in a house? My PAL is my 31 year old daughter that refuses to go to a house other than the one that she and Justin knew was their home forever. 8 steps from their bedroom/bathroom to the living room.
Thanks for any advice, I didn't know where else to turn. We took Bill's advice on the wheel chair, and it is wonderful!!!! Almost like part of her can go and do with little effort.Boo

I carry H around the house and up and down the stairs to our bedroom, but about 6 or 8 months ago I injured my back and we found ourselves in a difficult position for several days. We don't have a bedroom or a bathroom with a shower or tub on the main floor of the house. We had some strong friends carry H in my stead for a few days, but as a result of this and recognizing that there might be times when I either could not do it or might have to be away, we installed a chairlift. We had a company come out and quote our two staircases. The stairs going up would have been the most useful for us since our bedroom is up there, but the quote was $13,000.00 because of a curve in the steps. The basement stairs, where we have a guestroom and bathroom with a shower are straight, so the quote was $3500.00, a massive difference. So, we bought and installed the lift to the downstairs.

Since then, I have heard that the local ALS association sometimes receives these lifts as donations and will allow PALS families to have them as long as they pay for installation, which is generally between $500 and $1000 depending on the length. You might contact your local ALS Association or Muscular Dystrophy Association to see if they have one that you can install on loan.

I recognize that all PALS probably can't use this type of lift because it does require some trunk strength to ride, and also transferring can be an issue. Since we have not had to go down this road yet, I can't offer any guidance there, but if anyone knows how to manage this, please post a comment to this blog for others to use. Thanks for your question. I hope this helps.

Thursday, March 12, 2009

Number 10 more FDA and a thought about pain...

Hi Everybody,
Well, as you know if your read the comments from my "top ten" blog post that someone very accurately pointed out to me that #10 in the "not in order top ten list of what keeps me sane" is this very blog and the other writing that I'm doing. I've mentioned before that it is cathartic for me to write and get some of this out of my system. It's also hard to share some of the personal stuff we are going through, given that this is a public blog and that I have a professional life as well. At the end of the day, though, it's about helping as much as you can while staying sane and in control yourself, so that is what I strive to do every day.

A couple of thoughts have come across my mind in the past couple of days. Since I read the FDA the riot act a few blog posts ago, they have actually approved IND's for some undetermined number of people. I am very happy for those that received it, but I'll also say that the report that I read from the FDA was one of the most CYA (cover your ass) comprehensive buckets of bullshit I have ever read. They effectively addressed all my complaints while at the same time announcing that they were only going to provide IPLEX to people that has successfully submitted their IND's prior to March 6th, three days BEFORE they released their notice.

Adding a link to the FDA's official statement so you can see what I mean:

It is very well written and extremely politically savvy. It makes me nauseous.

We requested that our physician submit the IND back in November and did not find out until 6 weeks later that not only had he not done it, that he was not going to do it because "his insurance company advised him not to" and because "he did not feel qualified to monitor progress on this medication." Of course we would have been willing so sign any waiver requested by him or his insurance company, but this does not seem to matter. Now, the FDA decides to only give the drug to people that somehow found an MD that would be willing to "go out on a limb" for their patients and announce it in a way that gives no one that could not find a cooperative doctor a chance to find one? Very Sad.

Of course, they seem to have very good reason for this. Apparently, there is a "limited supply" of the drug and between those that had their IND's in, and the "lottery" that they are going to run for some "lucky" few to get into the clinical trial (where you may or may not get the drug) there just wouldn't be enough of it to go around for everyone that wants it.

Talk about a "convenient truth." This is a manufactured drug. It's not like we have to wait around until the fall to harvest another round of IPLEX from the Great Plains or the Steppe of Peru. Somebody please explain this to me. Please. Can I chip in for a couple more centrifuges or rubber gloves please? Need some of my spinal fluid for development? Sign me up. Maybe A-Rod or Sly Stallone can source some HGH for you to manipulate. I'll call them.

By the way, I'm not suggesting that my post had anything to do with the FDA's final decision to allow access to the successful few. I am suggesting that the fact that they did what they did is totally unfair and to me seems pointed at silencing the most active and connected people among the group seeking the drug.

Well, in that I don't think that they have succeeded because I don't believe that "Team IPLEX" is going to give up just because some of them got the drug. Eddie and his army have already announced their dismay with the limited supply and are fighting for everyone that wants to try it to have access to it.

I'm also not suggesting that I believe that this drug is going to be a panacea to anyone with ALS and to that end, I humbly request that anyone that DID get the drug to please keep the community posted as to it's efficacy (or lack thereof.) Please do that for us waiting in the wings.

Here's a note that Eddie sent to us all:

Dear friends,
First of all, I would like to extend a heartfelt personal thanks to any and all that helped us , (Team IPLEX) in our drive to gain access to IPLEX, as a possible therapeutic for ALS.
Although we (Team IPLEX & ALS worldwide) are pleased at the availability of Iplex for some under this condition, we are very displeased with its present unavailability to others. Accordingly, Barbara & Stephen Byer will continue their planned meetings with the Health Policy Staffs of ( 12 ) US Senators and ( 3 ) US Representatives in Washington, DC on Wednesday, March 11 through Friday, March 13, 2009 in an effort To Expand - Both the Allowable Number of Patients Accessing IPLEX and its manufacturing capacity by Insmed, perhaps with government assistance.
For further information concerning IPLEX please contact:

Stephen Byer
608 663-0920 Office
608 698-4200 Cellular
608 237-2274 Fax
125 N. Hamilton Street
Madison, WI 53703

On Pain...

On a totally different note, the teenage daughter of some good friends of ours was just "dumped" by her first "real" boyfriend. I remember when a similar thing happened to me a long time ago and the real pain that I felt. Looking back, of course, this was not a significant or defining event in my life, but the hurt, having never felt this before, was real to me at the time. Maybe something similar happened to you once.

This reminds me that all pain that is felt by anyone is real. It is real to them, no matter how it might seem to others. There's plenty of pain to go around and I think that what defines you is not how much you have been handed, but how you emerge from it.

My humble advice on this topic: You can never let yourself be defined by someone or something else. YOU have to figure out who you are, where you stand and what you are all about. The agendas and circumstances that are out of your control are not defining criteria for who you are. How you react, deal with and emerge from them are. Be strong.


Monday, March 9, 2009

Just real quick...

I often wonder if putting all of this personal stuff out there is "worth it" because it is hard to expose these things when anonymity is forfeited. I do this with the hope of allowing a more personal connection to the story and therefore a potentially bigger voice for awareness and ultimately the finding of a cure.

When I receive comments, like the one I received on last night's shower of rawness, It makes it worth it. 100%.
Thank you so much, whoever you are.

PS to Top Ten List:

I know I stopped at 9, but after "GOD" I could not go any deeper.
That one took it out of me...

Sunday, March 8, 2009

Sanity's Top Ten List:

So many people ask me how I keep it, so here's my answer:

I'll start by saying that my sanity is a challenge, but pales by comparison to the challenges to sanity that H has. I am only the one helping, I'm not the one that can't do.

So, sanity from my perspective is what this is about. I'll do this in the "top 10" format like seems to be so popular these days. I write off the top of my the deeper things generally come later in my musings. The following list is not in "order of importance" rather in the order that they come to my mind, which as you probably know, is not an "orderly place." I hope upon reading this that you can see why I am still sane. At least why I think I am. You may think I'm crazy to put this out there, but I have to. I hope you understand...

1: Heidi: She's hanging in there like a champion. On the days that I am feeling down or weakened, she cheers me up. She instinctively knows when I am at the end of my rope and has a knack for having the right amount of compassion when I need it, even though she's the one that is really hurting. I don't know how she does this, but it inspires me every day and gives me the strength to carry on.

2: My Girls: They rock on. No matter what is going on, they go about their day to day lives and just have an exuberance of youthful existence that touches me in a way that is amazing. They sort of live "a day ago and a couple of weeks ahead" as a wise friend of mine recently said. It is a gift, and they are a gift to me.

3: John; My business partner keeps things sane at work. This is obviously huge to me. We have our struggles related to the economic downturn, but have been able to keep business flowing enough to make things work. Not only has he been supportive on the work front, but also on the personal front, which means a lot. My day to day role in the business has not changed much and the most important aspects of what I do including client recruitment and support don't suffer, but time consuming things realted to operations of the business, finance, etc. have been in many ways taken over for me, so that's a massive relief. I can apply my efforts to bigger issues within our business on a global level, which is very important for our future.

4: The rest of the crew at T-bolt, our vendors and our clients. Everyone has stepped up on some level. It has been almost three years since we were handed this bag of doo doo and everyone has been very understanding and supportive. I don't expect our customers to accept or settle for a lower level of service because of it, and I don't think that they have, but things like my personal travel, and in-person meetings have been somewhat restricted. No one has questioned my commitment to the business and every day I feel a responsibility to do the best I can to help everyone in my business life make money. At a core level, that is what business is for. It also happens to have the power to find and foster meaningful personal relationships and deliver life experiences that transcend the material 'value' associated with them. This is what makes business worthwhile to me now. It has not always been so, but it is now. I have always strived to be fair in my business practices, both internally and externally, and this philosophy breeds healthy crops.

5; Nautilus and Paladia: I don't know how many of you have Comcast but there is a channel on HD called Paladia that has concerts, music videos and special music related events that I record every day. I recently have spent an hour or two with the following bands: The Foo Fighters, The Fray, Bruce Springsteen, U2, Sheryl Crow, The Counting Crows, Tom Petty & the Heartbreakers, Oasis, Eric Clapton, The Dave Matthews Band, John Mayer, a bunch of English bands at the "Isle of Weight" festival that I never heard of, but rocked. Oh, and Green Day too. Nautilus refers to my elliptical machine, which I bought in December and have been pounding out miles on since about 12/15. I have no idea how many miles I've run on the thing, but between it and the awesome ability to watch HD music, run, sweat and rock out to awesome music I have become addicted to something productive for myself when so many things would point me in a different direction.

6: U2: It might sound odd or trite in the face of this battle we are fighting that I would include a band in my "saviors of sanity" list, but I have been a fan for about 25 years, and have been inspired by their music, their lyrics and their commitment to help people for almost as long. Some of my finest memories are attached to live concerts of theirs I have experienced in person. Although I don't have any personal experiences with the members of the band, I have intensely personal experiences related to attending their shows, and listening to their music, which I'm sure many do. Some great stories to share with you over a couple of beers at a good Irish Pub when we get a let me know when!

7: Our Friends: There is massive power in the ability of people that you have a mutual caring relationship with to provide power, sustenance, soul food and strength at any given time. I care so much for my friends. There are so many people in this world that I would die for. Pretty much anyone out there that counts themselves as my friend can count themselves in this club. I view life very much as a journey of experiences marked only by the imprint that you can leave on someones heart. My hope and goal every day is to leave a positive mark everywhere I interact. I know I don't succeed in every circumstance, but I am human. Friends are the family you choose for yourself, and those that choose you. There is massive power in this. In this vein, it is hard for both H and I to accept all the help that we have been given and continue to get from our friends. We want to be the ones helping others. We struggled with this for a long time, but acknowledge our need, which as strong humans, is hard to do. We thank you all from the bottom of our hearts for all the assistance you have offered us out of friendship.

8: Our Family: Like I said, this is no particular order. To try and put one above the other would be an effort in futility and unfair to all. We have, by any account a HUGE family. Both H's parents and mine are divorces and remarried. So, the girls still have 8 living grandparents. Every one of them loves us all and contributes what they can to our situation. We have had some bad luck recently with health issues when they have come to visit, but we know that they are there to support us at the most awesome levels as much as they can. Most might think that this is an "obligation" and should be counted on, but I hear so many stories of abandonment or dis-association of families when a loved one is diagnosed with ALS that it is disturbing. A huge problem with this disease is that right now, there is no cure, there is no treatment, there really is no "light at the end of the tunnel." I think this fact quickly separates the wheat from the chaff in family situations and we have been fortunate to have support across the board. The extended family frequently helps out and sends love and support and this is all awesome. Every card, email, letter, phone call, etc. means something to us (this goes for friends too.) We can't and don't get back to everyone and hope you know that your love is not unappreciated or taken for granted. Heidi can't answer emails or phone calls most of the time and I can't respond to a shameful percentage of the communications I receive. Please know that we appreciate everything. It's hard to separate family from friends in a lot of ways on both sides, so alot of what I write about each refers, also, to the other.

9: God: I write a lot about the boundless and infinite well of love that is available to all of us. This well, to me, is God. I pray every day for God to show us the path. I thank him (for lack of a better pronoun) for the blessings he has bestowed upon our family. I pray for the strength to overcome this unfathomable pain and suffering we bear. I won't delve into the depths of my spiritual beliefs, but know this: I believe that there is one God. I believe that God is the same entity across many religious boundaries and that through the Millenia that we humans have tried to explain this power in our own terms by manifesting it upon beautiful humans that have seen his light and tried to bring to others through the pursuit of peace and the proclamation of Love. I also believe that "man" has twisted spirituality to fit secular agendas in so many ways, the politics of which has separated so many of us and lead to immeasurable suffering, that it is hard to traipse faithfully down the path of any particular "religion." God, Allah, the Great Spirit, the Universal Power, the Truth. Real world applications: The Golden Rule, the Ten Commandments, Proverbs. These are some of the things that guide me. The Love that Jesus had inspires me, the sacrifice he made leaves me in awe, the fact that he could have risen up in violence to prove his point but didn't makes him authentic because it wasn't what he believed in. It's the dogmatic, inflexible, "my interpretation of God is the only one" stance that I can't relate to. OOPS, I wasn't going to delve into the depths of my spiritual beliefs, was I?

So, I've been listening to U2 tonight and found this appropriate and relevant, as I happen to much of their stuff actually, in one circumstance or another.

(From Kite)

"Something is about to give, I can feel it coming, I think I know what it Is. I'm not afraid to die. I'm not afraid to live. And when I'm Flat on my Back, I hope to feel like I did."


"Who's to say where the wind will take you? Who's to say what it is will break you? I don't know... which way the wind will blow. Who's to know when the time will come around? Don't want to see you cry....I know that this is not good-bye."

I believe that all you can take with you is the love you have given and that that has been given to you. You don't receive love by doing the wrong thing, so don't. That pretty much sums it up for me.