Saturday, March 20, 2010

Frozen Shoulder....

When I had my last cycling crash, during a 150 mile Multiple Sclerosis fundraiser, I damaged my right shoulder and had a bunch of "road rash." That was September, 2007. A year later I was diagnosed with CBGD, right side specific. In the ensuing months my right hand and arm have become club-like and increasingly rigid. Normal for Corticobasal Ganglionic Degeneration.

A debilitating side-effect has been the development of a "frozen shoulder." It is a very painful syndrome and seems to be worsening as my right side becomes more rigid. I think my CBGD would be tolerable if this source of constant pain could be managed. I've had regular cortisone injections and they help for a week or two but the shots are painful in their own right.

My doctor has prescribed pain medicine but I've been avoiding them until I can no longer stand the pain. That time is near and I'm fearful of the line I'm about to cross.


  1. Hey -- once again we can relate -- I had a frozen shoulder on the left side five years ago, and I know the pain you are speaking about. Get to a Physical Therapist as soon as you can. The thing that helped me most was getting into a warm pool (80 degrees) and rotating my shoulder every day underwater. Try that along with the PT. I paid a local guy to use his pool daily. For me it was after I had arthroscopic surgery to cut apart the scarring that had accumulated. But if I had gotten into the water at the first sign of frozen shoulder I think it would have helped. Some PT practices have an indoor heated pool. Please check it out. I think it will help you. Don't get discouraged over this one -- it can be helped.

  2. Hey Bob, i also am getting frozen shoulder, i saw MD friday and will start with PT soon, been putting it off for awhile, although i know our there are differences with CBD symptoms. Damn this disease. I clicked on your pic to blow it up, and saw the road rash on your right leg and your right arm , that had to have hurt as well as leave a mark. One of the educators at Mayo told me to keep Kel exercising, and to walk backwards on the treadmill at lowe speed, and to open the hands and push back on the hand in the opposite direction then it wants to curl.
    Pain pills are just that, to help relieve your pain. It sucks to have this disease, but you don't have to be in pain. so use what you can. Have you tried Siminet ? Kel will start it this week, we'll see if it helps or not.. Last night we had card club at our house, very difficult for Kel to play, all helped in at each table, but I know it's important for him to keep trying, his retention abilities are poor, but the socialization is so important for him, he got real sad this morning though when he told me he just couldn't follow the cards anymore. His tears came easily, another thing he feels that he is losing. Are you following any of the March Basketball? warm thoughts, karla

  3. Oh CW... once again, I can only imagine your fear! Fear of the unknown... AND the known!! You are a very brave man and as you 'cross the lines' with this horrible disease, keep your eyes UP! There are no lines too big... .. .

    My husband and I pray for you and your 'Super-wife' everyday! We pray for wisdom and strength and FAITH!

    Hang in there CW! :)

  4. Anne,
    I may have mislead you. The frozen shoulder is untreatable because my CBGD won't allow me to do the physical therapy. Double Whammy!

    I have Sinemet, but I quit taking it for now. I think it was exacerbating my negative thoughts and feelings without much benefit. And yes, I have my (now disintegrating) NCAA bracket all filled out. In fact I run the company pool. :)

    Thanks for your prayers. TODAY I feel pretty good.

  5. I just wanted to say I love your jersey, and to let you know I'm still keeping tabs on you! You are in my thoughts and prayers.

  6. Singletrack,
    I liked that jersey too. In fact I co-designed it. Good to hear from you.

  7. Hi, my mom has CBD (or CBGD) and lives in Louisville, KY. Her neurologist specialist is trying Botox to help with the pain. Her pain is in her left forearm and hand. She'll be getting the Botox treatment about every 3 months to help control the pain. Thought I'd share that info with you in case you'd like to talk to your doctor about the possibility of Botox. Take care, JAS

    1. Pritesh from India,

      Even my father is having botox injection and that have help him to certain extend

  8. Hi Bob,
    I don't think anyone has posted about the benefits of Botox injections lately. We didn't have to get them for my father so this is 3rd party info but there have been numerous CBGD patients who got these shots to improve mobility of the frozen limb and minimize the associated pain. Didn't seems like these shots were a picnic either but most reported up to 6 mos of relief. You can still have many years ahead of you...don't let this disease cheat you (and Superwoman) anymore than it already has!
    Good luck,

  9. My dad was diagnosed with CBD about two years ago and his arm is getting worse and he was recently diagnosed with a frozen shoulder. He is having his first visit with physical therapy. His leg is also slowly starting to slow down and he is having a very hard time dealing with this disease. He has been healthy all his life and suddenly at age 53 he was diagnosed with this. If something has worked or helped you or your loved one please share so I can help share this with my dad.
    Thank you

  10. Thank you for the frozen shoulder discussion. I was diagnosed with CBD in the Fall of 2012 six weeks after completing a 3:26 marathon ( my PB). I have since retired and have been running on a treadmill, spinning and swimming daily with a view to keep moving and consider a triathlon. This frozen shoulder may prove to be a greater impediment than my diminishing balance.I find your picture inspirational and your blog insightful.
    Thank you


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