I also recommend gentle massages. We have regular massage sessions at work and as long as it not to strong its works wonders. You could also try tactile massage if you dont want to worry about muscle damage.

Hi,
My friend has just begun a weekly massage. From what I understand, gentle regular massages can improve circulation, which never hurts. We'll have to wait and see if it seems to help at all...

Preliminary Study of Quad Muscle Strength in Becker Muscular Dystrophy

"Nationwide Children’s Research Institute is recruiting men age 18 and older with a diagnosis of Becker Muscular Dystrophy and who are able to walk, even with some support, to participate in a study about strength. We want more information about how leg strength effects walking speed.  The information is important because we will use it to figure out how to measure outcomes in a separate gene therapy study of follistatin for BMD. We would like 40 more volunteers to participate in this study about leg strength and walking speed. For more information on how to participate, please contact study coordinators Lindsay Alfano at Lindsay.alfano@nationwidechildrens.org or Linda Lowes atLinda.lowes@nationwidechildrens.org, or call 614-722-6881."

 I have a Facebook group where I talk about living with beckers you can join and meet others at: http://www.facebook.com/pages/My-Beckers-Story/209348579098673
and you can also view my blog at www.my-beckers-story.blogspot.com

At my blog I tell my story and take you from diagnosis at age 10 up till age 35 please join me.

Cybernetic I have a Facebook group where I talk about living with beckers you can join and meet others at: http://www.facebook.com/pages/My-Beckers-Story/209348579098673
and you can also view my blog at www.my-beckers-story.blogspot.com

Your very welcome! Sorry it took me so long to respond the My Becker's Stroy blog really keeps me busy, When I was 18 at timed I did feel pain especially when I pushed myself to hard, it took many days for me to recover back to normal strength levels. I never really work out though I did lift small 5 pound weights for a bit but my doctors told me to take it easy and do it every other day. I tried working out a little doing push up etc. but they always wore me out. The most I did at that age was go for a lot of walks with my friends at the mall or beach but I did have to take it easy. At 18 I could still climb stairs but they were a challenge at times my mom remembers me falling down the stairs alot at this time I just tried my best to be careful using stairs now at age 35 stairs are a real pain so I avoid them. 

If you would like to read my full history from age 10 to 35 you will want to visit mt blog at: www.my-beckers-story.blogspot.com if you haven't already. Many post there over 45 in total .

Thanks for reading my story here,

keep in touch, Brad

Hey

Weightlifting is a touchy subject, since if done incorrectly it can cause more damage. If you can find a pool, swimming...in whatever form you can do it...is a much better alternative...still a good workout, but much less chance for damage.

Personally I've found swimming most beneficial for me. It is also true that if you don't use it, you will lose it, so doing something is a very good idea...just need to find something that can't likely make things worse.

We will be posting the BMD conference video soon and there are quite a few long conversations about this exact topic. I encourage you to come to next year's conference in Chicago in early August.

Kevin

Is it advisable to begin light weight lifting to increase arm strength?  My arm and hand strength seems to be fading.  Any thoughts?

Gary,

I am 33 now and have know I had BMD since I was 20.  What you describe is how things progressed for me.  MDA clinic can do all of that testing as well.

Robert,

Your story matchs my mild BMD.  I have found in the past 3 years the weakness is progressing to my arms as well now.

Hey Sam

Glad you found us. As for equipment, the MDA does a really good job of providing equipment for folks that need it. Many items can be borrowed from their store of equipment. I can help you find your nearest MDA group if you would like. Also, a good doctor that is familiar with MD should be able to help with this kind of thing. If you need a referral to a good MD doctor, the MDA is a good source and I can also provide references if you would like.

Kevin

Hey Sam

I sent you an email.

For everyone else...here's Dr. Flanigan's webpage: http://www.nationwidechildrens.org/kevin-m-flanigan

Kevin

Here is a great summary of the advice that respiratory experts are receiving with regard to MD and anesthesia. It is a good read and a must for any doctor before any surgery that you may have.

Here's the webpage: http://chestjournal.chestpubs.org/content/132/6/1977.full.html

You can download the pdf here: http://dl.dropbox.com/u/3236357/AnesthesiaMD.pdf

-Kevin

I am Sam K. and I'm 13 years old. My mom was a carrier of BMD, so she knew there was a risk. I was diagnosed with the disease when I was 1 year old. I was also a late walker, and I fall down more than most people. I started taking prednizone, and I started falling less for a few years, but then I stopped taking the drug because of a side effect I didn't like and now I'm falling more again. I don't have any equipment (wheelchair, foot braces) but I'm considering getting some foot braces and I'm wondering where I can get some.

Hi. My name is Sam, I'm 13 years old and I have Becker MD. I would like Dr. Kevil Flanigan's e-mail please.

Hey Robert,

i happened to be reading and went over your story. I myself am 17 years old and was diagnosed november of this year, my story is alot like yours in that i was a national swimmer when i was 15 and now have been forced to retire to do the fatigue and pain caused by BMD. I was wondering if you could let me know a little more details of your life in regards to pain around the age where you first started to relize something wasn't quite right And how you coped with it. I have to take 4 ibprophen a day for pain and asked my docter for alternative to taking ibprophen and about to start some crazy medications within the next few months i was wondering if you found a way around the agonizing chronic muscle pain caused by B.M.D

thanks =)

~ Brad

Thank you so much for sharing your story Brad.

I am 18 years old and was diagnosed earlier this year! i still havent come to terms with the whole thing. I currently am very fit but BMD has caused me to retire from being a national level swimmer. I am wondering if you went through alot of pain around my age, after a workout I go through a ton of pain. Stairs are also becoming a pain is this kind of where you were at when you were 18?

thank you

Brad

This is directed mainly to Tammy.

I am a 17 year old just diagnosed with BMD this year. Cpk levels are elevated at different times for example when i workout and break down my muscles they go crazy high into the thousands other times they are relatively normal. It sounds a lot like BMD, if you need another way to confirm push for a muscle biopsy.

-Brad

Hey Kmac

I can tell you definitively that you are not the only one. The tricky part is that the boys and men get most of the attention when it comes to the condition, since it is typically more serious. Most carriers don't even know that their symptoms may be BMD related. They just think that is the way they are and don't know they might be showing signs of BMD/MD. Granted your symptoms are more serious than most carriers, but you are not alone. This website and the upcoming conference in LA Aug 13th are to help all of us BMDrs to gather together and meet other folks.

The simple fact is that most people that suffer from BMD never meet another person with the same condition......so we all feel that we are the only one.  The most amazing thing about the BMD conference is the joy that everyone feels when they can just meet and talk with other people that completely understand what they are going through.

I know you are very far away, but we'd like to invite you to come to the conference if you can at all make it. I guarantee it will be worth the trip.  If that is not feasible there will be a Live webcast on the internet that you can attend and ask questions as the conference is happening live.

Webcast link: http://www.ustream.tv/channel/bmd-2011-conference---los-angeles

Facebook Page: https://www.facebook.com/home.php#!/pages/BeckerMDorg/134052159895

- Kevin

Hey Gord

This has been a hot topic for a while. I'm a bit suspicious about anyone trying to sell something. This will be one of the questions that will be asked and answered at the BMD conference.

Personally, I think this 'treatment' is simply the response to exercise. Last year we had a presentation about a BMD exercise study that showed some pretty remarkable improvments (not cures) due to exercise on a stationary bike etc. I think this vector stuff may be something similar. If so, you don't need to buy anything to see strength improvements.

In either case it will be discussed at the upcoming conference.