FSHD Awareness Campaign

Discussion in 'Off-Topic' started by Veil Guy, Oct 20, 2014.

  1. Veil Guy

    Veil Guy PSL +15 Advanced User

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    Some have been wondering what's been taking Veil so long to get G5 out. Well...

    I've been recently diagnosed and genetically confirmed to have a form of MD, called facioscapulohumeral muscular dystrophy. FSHD is believed to be the 3rd most prominent variant of Muscular Dystrophy and is 70% inherited and 30% de novo. Mine is inherited meaning I have had it all my life and never have had it diagnosed. FSHD was only discovered as its own form of MD in the early nineties and the genetics, epigenetics, and pathogenesis is still not fully understood. Which means there are no known treatments and no known cure. Yet! ;)

    It is currently believed to affect about 1 in 20,000 making it a rare disease. But not being fully understood and never diagnosed in children or adulthood until symptoms present themselves likely means that the true incident rates are higher.

    Which means that some members or visitors in our community have been or are being impacted by it possibly without their knowledge. Family, children, friends, etc.

    The disease has been taking a physical toll on me. I've lost the ability to run recently, have difficulty navigating stairs, fall when I walk unexpectedly and is possibly heading me to a wheel chair if I allow it to just take its course.

    For a time it's been the most terrifying experience in my life, robbing me the ability to do things that not so long ago one would take for granted. But I don't believe entirely in fate so I have been gifted with a new meaningful mission in life. One I believe will be fulfilled in my lifetime.

    To that end, I have aligned myself with some of the very best MDs and PhDs who share a passion to make a cure and help them in every way possible that I'm able, which includes to raise awareness amongst other positive efforts.

    My fate may be sealed, but that's only encouraging me to help others.

    I am in the process of creating a blog, Google places page and am on a mission to leverage the Internet to help raise awareness, improve diagnosis, create legislation, fund research, improve education, and find new people who are affected to increase the momentum of their noble pursuit.

    The new Blog is going to be called FSHD Lab Rat.

    The site address is: FSHD Lab Rat @ Google+ and it's related blog will be fshdlabrat.blogspot.com with the email being fshdlabrat@gmail.com.

    In part this blog will be chronicling my personal fight against this disease but more importantly will serve to educate and direct those who are affected who feel hopeless and without guidance as I initially felt.

    The title refers to the fact that I have been breaking the waves and not accepting the notion that those with FSHD can not weight train and strength train their way out of this debilitating disease.

    That's what I have been told by some. That I "can't" and that it may only make things worse for myself.

    I don't accept that notion, although I appreciate the expressed concerns. And so, I am embarking on a personal experiment to challenge the conventional wisdom and myself and give myself the possibility that I could be the exception that "proves the rule." ;)

    If I can succeed (even partially) surely others can and will. If I do not, then I know I have given it my best shot. And will make another path.

    Hopefully the outcome of this "self-directed" research will help the cause whether I am personally successful at beating it or not. Either way, knowledge will be gained. Maybe new clinical research spawned from it.

    FSHD has just also been discovered to be potentially genetically connected to BPAD/Schizophrenia. I've also been diagnosed as having BPAD since my 20s which happens to be around the time FSHD started quietly creeping into my life without my knowledge. This is literally bleeding edge genetic research and modern psychology (behavioural genetics) and could point a way to a cure to a variety of genetically connected but seemingly disparate diseases that affect so many around the world.

    If you know of anyone strickened with MD/FSHD or has been presenting the classic, if only mild, symptoms please spread the word. And even if you don't. Please spread the word to help us raise awareness. Our collective reach will have a positive impact on others! :)

    In the meantime for those interested in understanding this particular challenge we are facing:

    https://www.fshsociety.org/pages/about.html

    Thanks guys! :)

    VG
     
    Last edited: Oct 21, 2014
  2. xydrine

    xydrine Vengeance. Justice. Fire and Blood. Administrator Premium Member

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    Moved to Off-Topic, not suitable for the Announcements section. Thanks.
     
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  3. Veil Guy

    Veil Guy PSL +15 Advanced User

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    Thanks Eric. Wasn't sure where it belonged. Please stick it?

    Bob
     
  4. PointerCone

    PointerCone M3 Kng Advanced User Premium Member

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    good luck Bob, I am sorta breathless hearing this and ONLY wish the best for you. Keep up the great attitude!!!
     
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  5. Vortex

    Vortex Making Videos Administrator Premium Member

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    I wish you all the best Bob.
     
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  6. xydrine

    xydrine Vengeance. Justice. Fire and Blood. Administrator Premium Member

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    It sounds odd, but I'm going to keep this thread unstuck - frankly, people ignore the stickied threads part of the thread listing - this is the main reason why I rarely rarely sticky threads in the announcements section. I think the best bet would be to keep this thread unstuck and simply bumped.

    We're with you in spirit.
     
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  7. andresg

    andresg What is PSL? Advanced User Premium Member

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    Wish you the best!
     
    Last edited: Oct 20, 2014
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  8. CRS123

    CRS123 Velocity: r = d / t Intermediate User Premium Member

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    Your positive attitude goes a long way in fighting this. That plus good self care and stress reduction helps to keep your immune system strong..and put this thing in remission. Positive thoughts and prayers coming your way.
    CRS 123
     
    Last edited: Oct 20, 2014
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  9. CobawLT2010

    CobawLT2010 Wubba Lubba Dub Dub! Moderator Premium Member

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    I'll keep you in my prayers. I wish you and your family/friends the best in this tough time. I hope that your good days are the best and your bad days are few and far between.

    Just keep rowing we're in this together.
     
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  10. v1fan

    v1fan smeg Advanced User Premium Member

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    Best of wishes!
     
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  11. Veil Guy

    Veil Guy PSL +15 Advanced User

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    You guys are my family and friends. :)

    Thanks guys, all so very much. You guys, this forum, and friendships/bonds help me keep my center.

    I know we each have our own life forces with which to contend. The ups the downs and everything in between. We each have our demons to master.

    I look at it as a Blessing. A wake up call that life is so very very precious--a gift from the Almighty. Not an entitlement.

    What we do with that gift is up to us. Either you are defined by your life experiences or you define them.

    I wish and pray for all of my extended family and friends here and beyond, y'all go with option B always.

    Every experience IN LIFE is a GIFT even if it may feel at times like a curse or you've ever been labeled as having one or been "defined" by someone else or event, health condition as I have been and only now understanding the context and meanings of 50 years of my life already passed. Answers are coming to the whys of the past. That's a gift in and of itself. Everything is coming together in clarity. It's awesome and liberating at the same time. And puts you in touch with what is truly significant in life and you can't buy it. Questions come in our time, Answers in His.

    There are no limits except the ones we place on ourselves or allow others to place on us.

    If you remember that, know yourself, trust yourself and your instincts you can and will accomplish significant things in your life, something things that are greater than yourself.

    My gift has offered me a new opportunity to make this place a little better for the ones that are to follow.

    And I thank God for that opportunity.

    My prayers are also for those that are afflicted worse than I. The children that have had their limitations imposed upon them at birth. At least I had 47 years of mobility. I'm already cured. :)

    This one is for them! :thumbsup:

    VG

    R.i.P. the members of our community over the years who have already received their promotion from this life.
     
    Last edited: Oct 21, 2014
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  12. Benji

    Benji Premium Member Advanced User Premium Member

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    Great attitude VG and I wish you all the best. If there is anything I can do to help somehow, please let me know!
     
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  13. Veil Guy

    Veil Guy PSL +15 Advanced User

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    Spread the word if you have the time. Together we can change the world for others less fortunate than ourselves.

    There are a lot of people affected worse than I or don't even know it.

    Parents who have a non-manifesting form of the disease but can pass it on when they have children who can beseverely affected.

    The children like myself who were/are limited and isolated from others for reasons of a simple inability to do gym well or participate on most team sports. Who felt/feel like a defect growing up and ended up having much of their lives preordained by something unknown but as simple as as a genetic disease.

    I posted this not for my own sake, but to raise awareness as the numbers in our traffic must include those that are afflicted.

    What our effort needs is more diagnosed patients for more research.

    In the 20 plus years of genetic research at Kennedy Krieger at John's Hopkins, Dr. Kathryn Wagner has only been able to find and work with fewer than 60 controlled test groups. We need more. I've participated in every trial so far that was open to me at the time, given tissue, etc. But part of the ongoing challenge is discovering more individuals from around the world across a greater cross section of races and regions. A bigger cross section of the overall genetic pool, so to speak.

    Raising awareness is the goal I am asking for help in from those in a position to do so with their social media and other forum experiences.

    My trajectory is already in motion. My contribution to their efforts is to be a possibility.

    I have researched and researched this and have come to know some very special people. I've volunteered to help provide answers to questions some of them never asked. I'm researching strength training, hypertrophy muscle building (a big no no). I say **** it. It's worth the risk. What ever happens for better or worse is going to provide some invaluable information to those that can use it for others. This is not to say I am prepared to fail. Quite the contrary.

    I've been training for about 3 weeks with a mix of PT and gym work. About 3 hours a day and 1.5 hours of PT three days a week.

    I have been often posting between my training sets. LOL

    So far the very early signs are promising. I'm throwing everything I can including some cutting edge performance enhancing materials. Things that have neer been tried before or thought of to try in a clinical context. The prez of the society believes in what I am doing and believes I am going to win. The geneticists not so much. Haven't seen the effect reversed through exercise. How's that for a challenge! :)

    Yeah I like that challanege. I'll be The BandSegged/RDR Lab Rat. LOL.

    I'm currently on a solitary exploration looking for an island in the vast ocean that I believe is there to land on and I'm not going to quit until I find it and prove that it exists. And if for me, for others.

    I've been a student here, but I am also striving to be a teacher to those who are a lot more intelligent than I am. :)

    I love my life again and those that are in it.

    I'm solid. ;)

    VG and in this context, I'm Bob.

    PS: for those that participate on other forums or social media, I would be truly greatful for the links to the google places page. From there links and knowledge is going to flow to a lot of good places. Your contribution in raising awareness must result in an acceleration of a solution for countless others. And those that know me, I love to speed. LOL

    ---------- Post added 10-21-2014 at 12:17 AM ---------- Previous post was 10-20-2014 at 11:43 PM ----------

    And I you. ;)

    Bob

    ---------- Post added at 01:17 AM ---------- Previous post was at 12:17 AM ----------

    I'll take that under advisement in light of the last two days. LOL.

    Seriously though, thanks and I am with you: mind over matter. :)

    Bob
     
    Last edited: Oct 21, 2014
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  14. drewdownkali

    drewdownkali Rabbit breeder Advanced User

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    Damn, sorry to hear this and forgive me if it sounds interesting to me as I am studying physical therapy. So it just affects the facial and shoulder girdle muscles (scapula, humeral)?
     
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  15. Veil Guy

    Veil Guy PSL +15 Advanced User

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    No need. I am grateful for your question and interest! I've been working with a great (PT) guy myself. I appreciate the good work you guys do! I hope others who may be connected in ways will join our dialogue.

    We need more PT guys familiar with degenerative neuro-muscular disorders such as FSHD. How and what therapy training--be it cardio, isometric, resistance band, concentric/eccentric weight, TUT, etc--that we may discover to be most appropriate and to what extent--I personally believe is critical in effectively tailoring and managing the progression for each specific circumstance presented. These varying approaches to my knowledge haven't even been explored in the context of this specific disease! That's in part what I am setting out to discover! Are isolation exercises really good? Or (I believe) muscle group training. I am personally trying them all. In combination! I'm calling it throw everything at the wall and see what if any sticks! :D

    Most PT guys I see treat injuries and the like. Dystrophies are an entirely different matter although the end result is similar without any or proper therapy. In the conventional thinking of MD, the best that is genuinely considered possible is slowing NOT reversal. In fact many historical studies' conclusions have either been inclusive or contraindicated. But having examined these tests from afar through reading, I believe a lot of holes exists either in the chosen testing methodologies and test groups selected. Unfortunately the neurologists and orthos that I have come across even at these leading institutions have no conclusive opinions on the matter and therefore there is no incentive per se other than do cardio. I say we need MORE TESTING! Sound famiar radar fanatics? LOL.

    So we're left with cardio only basically, certainly not heavy lifting for hypertrophy or increased strength/mass. The belief has been since the muscle must suffer injury (ie; micro tears) to rebuild but a dystrophic muscle can not rebuild leaving only the damage and the furthering of more rapid deterioration of whatever remaining muscle that can not be recoverable. That's the really scary part of this. If that's indeed true then trying to train yourself out actually accelerates your deterioration with no chance of return. So let's say I heed the advice, maybe I have five years or maybe another 20 or maybe two before being wheelchair-bound. But let's say I don't and I take a shot, well what then? If I really try do I make that 20 years now two years? Two months? Yikes!

    That's the perceived risks with which I must contend.

    So what choice would you make? I chose to try to go for it. Whats there to lose? Time, I guess. On the other hand what is there to gain? Wow. Much more than just time. To me it wasn't that hard of a choice to make. ;)

    I will discuss this on my blog when I get to that part.

    The thing is though, my understanding of FSHD at this point as apposed to say DMD or DM, the genetic and epigenetic processes are still not as well understood and appear to be quite complex in their interplay. Fortunately with the influence of Daniel Perez of the FSH Society, others like him, other organizations and research teams around the world, the momentum is gaining.

    For example, many with FSHD who do not present, still have the genetic defect 4Q35 but due to other dynamics outside of the genetic fault the disease may be held in abeyance. In fact many more people have the genetic predisposition and don't even know it. In effect they are the carriers of the disease and can pass it to their offspring who can manifest and quite more severely too.

    Another thing that is interesting is that it presents differently in different people with the identical genetic allele deletions.

    So two brothers have the same condition, same genetic flaw but have different muscle groups affected to varying degree.

    This makes is much harder to determine a proper diagnosis because the symptoms can be quite variable and appear at different times and at different progressions. Often the deterioration occurs in step downs and not asymptotically.

    My understanding is that generally FSHD starts from the top and progresses downward as we age and mostly presents asymmetrically again for reasons unknown. It almost always involve the face and it is not uncommon to see faces that are asymmetrical in appearance. Individuals with FSH typically can't whistle or drink through a straw for example.

    If it prevents earlier (ie, infintile onset) the disease is generally more severe and rapidly debilitating. Many children I saw at KKI were already wheel-chair bound and really suffering. :( In fact that experience has been by far the most distressing part of this whole experience. But it was also the most inspiring and compelling one as well! :) I found my calling in life at that instant. I knew it then and I know it now.

    Other tell take signs are splayed/angel wings due to severe loss of the serratus and other shoulder muscles. Difficulty lifting arms over head from the sides or working overhead is common I understand. Also super common is a varying degree of lordosis. To an untrained eye that could appear as a skinny-fat ectomorph. Similar appearance except for foot drop signs or angel winging which suggest FSH. Interesting I understand 80% of us have adolescent hearing loss above 3k. In my case I'm good even now above 13k. So my face was largely spared which is also unusual for FSH.

    To make things even more complex, I was born with escavatum as well. Until recently that had been attributed to being a skeletal deformation related also to my blade winging when in fact now we know that is was in response to improper endoskeletol muscle formation in the womb, a result of the disease. In fact I am now being told that while both conditins are MD related, each presentation is independent from one another!

    But what is unusual about my case as I understand is that my quads are affected. When I was young I could squat about 350 or so when I trained younger. Now I can barely do 90-110. The glutes don't appear to be affected but the other muscles are being strained as they compensate for the quads.

    Another common tell tale sign is foot drop due to dystrophic tibialis anteriors.

    You can identify that when you ask someone to try to walk on their heels and their toe/ankle drops toward the floor.

    The belief there is that an orthotic is needed such as toe off. But I'll be damned if I'm going to lean on that option! :)

    Again in my case I am working my tibs directly to try to regain control of that.

    Something else that I have found and the gentleman of the society also has. We have lost much of our pateller response. Which is intersting too as pateller is a neurological response and my NCVTs are nominal. I have a theory about that too that I am going to test empirically.

    This is occuring mostly with my right leg, the one that is especially weak and gives out. It feels like I don't have one connected to me sometimes. It's our hope that by training this response can be improved. So far only three weeks into it, not so much.

    Outside of the muscular system, the skeletal system is often affected as well. My most recent BMD results are consistent with their research team's expectations. Osteopenia and osteoporosis is occurring in certain tissues. Fortunately it's mild enough at this point that I am hoping to manage it through excercise and diet/supplementation naturally and I appear not to be at an especially high fracture risk. Another risk comes with this disease. A serious fracture is thought to potentially be irrecoverable as by the time the bone tissues heal, the atrophy of the surrounding muscle tissue that would occur in isolation during healing would not return. Yikes again! :)

    With respect to the major muscle groups potentially involved:

    My traps and lats seems to be responding, slowly. I am getting good DOMS which I love to feel after a hard workout.

    But not so much with the quads. I'm also doing the elipticals (at PT) and bikes at gym.

    I train generally to muscle failure and sometimes do pyramids or reverse pyramids.

    Also doing some cool and uncommon core exercises, such as the pallof press. Awesome excercise for the core without excessive thoracic movement and risk of injury.

    One of my favorite and hardest strong-man power lifting (Danger! Danger! Will Robinson! :D ) exercises you don't see much at a gym, farmers walk.

    The pecs are slow to come along, always have been, but my PT suggested my difficulty lay more in the shoulder weakness not giving me a good foundation to press. First time I heard that. Doing flat bench presses mostly with dumbells minimizes shoulder instability.

    Since I present muscle weakness asymmetrically, I train each individual side, generally.

    The good news are my delts are starting to pop again which is great at 50 because women love shoulders LOL. :)

    Seriously though if your are interested in increasing your skill set add me to your Google circles and I'll do the same for you and your PT company/school and maybe we can try to build a network of PTs and organizations that can help with the effort. Our society doesn't have that network built and we had to improvise to find our guy.

    He's been given me guidelines outside therapy and I have been incorporating that into my own routines at the gym. I am my own personal trainer. If you or your company/school wants to pursue this, we can start building it ourselves. I'm sure it would be a welcomed development in this undertaking. It all starts with education so you guys are the future. :thumbsup:

    Thanks again for all that you do for us. :)

    Do you social network with others like yourself or company? If so, do you think it possible to get a group together?

    Maybe I could try to orchestrate a webinar or a meeting place where some good education could be provided to empower us to address this shortcoming in the effort. Having knowledgable PTs of these conditions could go along way.

    I've already had such a discussion with the folks at JH/KKI. I am also connecting with U of Rochester who are also on the bleeding edge of research. There could be a lot of visibility.

    Let me know your thoughts please. If you can get me a name I'll make the "sales pitch" or if you prefer you could open a door. :)

    Bob
     
    Last edited: Oct 21, 2014
  16. CJR238

    CJR238 -CMS Article Admin- Administrator Premium Member

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    So sorry to hear VG, wish the best for you and keep up the positive attitude! With your thoroughness in the CM community i am sure it will shine in your rehabilitation and drive for a solution.



    Over the years i have assisted many PT rehab centers and gyms. In the fitness industry the many variations of degenerative neuro-muscular disorders certainly can be perplexing and no one size fits all solution if there is even one. One promising product is the Power Plate and how its able to stimulate muscles, may be something to inquire with your PT: http://powerplate.com/healthcare
     
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  17. Veil Guy

    Veil Guy PSL +15 Advanced User

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    Appreciate your service too! Really, nothing to be sorry about.

    Now you can take that notion to the bank and cash it! :)

    http://www.youtube.com/watch?v=p_tYQRP4QWM

    I am actually supremely pleased. I'm going to do something good with it. So I truly look at it as a gift. A gift that gives me a new purpose in life. A calling, as it were. I needed focus. Fortunately my wife and I never had kids so the genetics stops with us. :) But my service to a cause greater than myself will be a good substitute for not having children to carry on. :) So it's really fine. I did this public "outing" of myself :) not for sympathy but for a cause that could use a little accelerator. We're getting closer to an answer, that's a fact. Some clinical trials are in the works. I am considering being a Guinea Pig (I mean Lab Rat) there too. :)

    The nice thing too, is that I am not breaking any PSLs or need a good CM to help or a worry about LEOs, Redlight cameras, or FILTERING. I needed a break from this too. All it really takes is just good people of good will and actually a couple of mouse clicks to spread the message. It's really mind-blowing what the Internet can be used for. Something like this could have never been done even not so long ago and solutions to paramount problems in the future, will come even sooner. :)

    It's more powerful than: http://en.wikipedia.org/wiki/Library_of_Alexandria, it's loss through destruction (sound familiar) probably set us back thousands of years. Today, I trust that can't happen with the Net despite attempts to do so. Our Founding Fathers must be smiling from above for having set us on the true path to Prosperity for All.

    With respect to Powerplate, I think I recall reading a similar post from you about this but didn't know what the name meant. Although if I recall correctly from that post, you mentioned something about Cybex having purchased them or something of that nature? Well at the local club I am going to, outside of the PT therapy, that's all they have.

    I use a combination of free-weights, pulley systems, and then the Cybex equipment to finish off certain specific muscles of a muscle group (ie; my quads). Years ago when I was in my 20s, it was Nautilus. I thought they were smooth, but Cybex is really fine equipment to work out on, to finish. And the recumbents, I use to cross-train (cardio) are also Cybex I believe. Nice equipment too! :)

    Would you be willing to pass the word to your contacts about the cause I am serving? We need a greater tissue donor pool and I personally would like to facilitate the education of PT organizations (and the equipment mfrs who provide them equipment) to help promote the cause not only for this affliction but other genetic disorders that can benefit from the products that they produce.

    It was very hard to find a PT guy that I could really trust to help keep me on the straight and narrow. My problem is that I have trouble pacing myself. I love SPEED. LOL

    But there is an additional level of danger (which I can't ignore) that I could hurt myself. I already strained a muscle, which can be especially problematic in healing it.

    This is a tough lesson for me to deal with. Always has been. And that lesson that I need to respect is: sometimes moving slow(ly) IS fast.

    Brian of AIT is faithfully doing his service and is has been nothing but supportive and that kind of faith in the face of uncertainty that he shares (as with others I am meeting along the way), definitely is sustaining. I'm still experimenting with diet and supplementation to strike a natural balance to give my body the best chances to grow muscle (and hopefully while losing some belly fat along the way). The other great outcome is right after leaving the office, I can give my three then get home, shower and go to sleep. I haven't turned on the tube for a while and that has cleansed my mind of the junk. In fact, I am about to pull the plug on F'n Comcast (their technical name). LOL

    Any help you can do would be immensely appreciated. If we could get some corporate sponsorship, again, it could really be a WIN WIN WIN WIN for everyone in that extended industry! :)

    Thanks for your support CJ. I know we have had our different perspectives since the Max release, but like anything, we'll get through it, no problem. Let's help make this a better place, not just here, but in all parts of our respective lives. :)

    Pay it forward. :thumbsup:

    PS: Guess where I am off to! I'll check in when I start riding. 20 miles on a bike goes by in a blink that way. Beats watching the tellies they have. ;)

    VG
     
    Last edited: Oct 21, 2014
  18. handymandavebritain

    handymandavebritain Learning to Walk

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    Last edited: Oct 21, 2014
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  19. Veil Guy

    Veil Guy PSL +15 Advanced User

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    Awesome! Truly awesome! On both counts!

    Bob
     
    Last edited: Oct 21, 2014
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  20. CJR238

    CJR238 -CMS Article Admin- Administrator Premium Member

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    I would be happy to discuss with some of our manufacturers and PT guys, im sure they have a lot of experience with it and would have some interest. Especially the Power Plate guys since there product has already proved it can help with some muscular deterioration.

    Some of the best are sports medicine and specialized PT guys, it takes a special understanding of the body and its mechanics to understand this type of stuff.

    Best of luck!