Thursday, March 20, 2014

They just aren’t cold anymore …

Over the years, whenever the temperatures dipped, my fingers would stop working and my hands became worthless. Gloves and hand warmers helped, but it still was a problem. Beginning last year, I noticed that my finger strength declined even when it was warm. I dropped things more frequently and found it difficult to pick up and hold objects.


Frustrated, I decided to do something about it. On the internet, I found several sites that had finger and wrist exercises. In February, I incorporated a dozen of the exercises into my daily workout routine. By day three, my fingers, hands and wrists were sore, and I decided to back off a little. I now perform these exercises every other day. It has been a month and my fingers are stronger. It is easier to grip things and my hands function better.

1. Finger Curls
Keeping your wrist straight, extend and spread your fingers. Then make a loose fist, keeping your thumb on the outside of your fingers.

2. Make a Fist
Hand and finger exercises can help strengthen your hands and fingers, increase your range of motion, and give you pain relief. Stretch only until you feel tightness. You shouldn't feel pain. Start with this simple stretch:
  • Make a gentle fist, wrapping your thumb across your fingers.
  • Hold for 30 to 60 seconds. Release and spread your fingers wide.
  • Repeat with both hands at least four times.
3. Finger Stretch
Try this stretch to help with pain relief and to improve the range of motion in your hands:
  • Place your hand palm-down on a table or other flat surface.
  • Gently straighten your fingers as flat as you can against the surface without forcing your joints.
  • Hold for 30 to 60 seconds and then release.
  • Repeat at least four times with each hand.
4. Claw Stretch
This stretch helps improve the range of motion in your fingers.
  • Hold your hand out in front of you, palm facing you.
  • Bend your fingertips down to touch the base of each finger joint. Your hand should look a little like a claw.
  • Hold for 30 to 60 seconds and release. Repeat at least four times on each hand.
5. Pinch Strengthener
This exercise helps strengthen the muscles of your fingers and thumb. It can help you turn keys, open food packages, and use the gas pump more easily.
  • Pinch a soft foam ball or some putty between the tips of your fingers and your thumb.
  • Hold for 30 to 60 seconds.
  • Repeat 10 to 15 times on both hands. Do this exercise two to three times a week, but rest your hands for 48 hours in between sessions. Don't do this exercise if your thumb joint is damaged.
6. Finger Lift
Use this exercise to help increase the range of motion and flexibility in your fingers.
  • Place your hand flat, palm down, on a table or other surface.
  • Gently lift one finger at a time off of the table and then lower it.
  • You can also lift all your fingers and thumb at once, and then lower.
  • Repeat eight to 12 times on each hand.
7. Thumb Extension
Strengthening the muscles of your thumbs can help you grab and lift heavy things like cans and bottles.
  • Put your hand flat on a table. Wrap a rubber band around your hand at the base of your finger joints.
  • Gently move your thumb away from your fingers as far as you can.
  • Hold for 30 to 60 seconds and release.
  • Repeat 10 to 15 times with both hands. You can do this exercise two to three times a week, but rest your hands for 48 hours in between sessions.
8. Thumb Flex
This exercise helps increase the range of motion in your thumbs.
  • Start with your hand out in front of you, palm up.
  • Extend your thumb away from your other fingers as far as you can. Then bend your thumb across your palm so it touches the base of your small finger.
  • Hold for 30 to 60 seconds.
  • Repeat at least four times with both thumbs. 
  • When the above become easy, add the following: Starting with an open hand, touch your thumb to the pad just below your pinkie finger. Release and then touch your thumb to the tip of your pointer finger, ring finger, index finger, and pinkie finger, in sequence. Repeat at least six times with both thumbs. 

9. Thumb Touch
This exercise helps increase the range of motion in your thumbs, which helps with activities like picking up your toothbrush, fork and spoon, and pens when you write.
  • Hold your hand out in front of you, with your wrist straight.
  • Gently touch your thumb to each of your four fingertips, one at a time, making the shape of an "O."
  • Hold each stretch for 30 to 60 seconds. Repeat at least four times on each hand.
10. Muscle Strengthener
  • Place your hand palm­-down on a table. 
  • Place your other hand on top of that hand, and lift up with the fingers of the hand on the bottom. You can lift the fingers all at once or one at a time.

11. Finger Joint Blocking
  • Lay your hand palm side up on a table. With your opposite hand grasp and hold the affected finger at the middle section just below the end joint. Bend and straighten the finger at the end joint only while holding the rest of the finger straight. Repeat for each finger.
  • With your hand in the same starting position, bend and straighten the finger at the middle joint only, while holding the rest of the finger straight. Repeat for each finger.
12. Grip Strengthener
This exercise can make it easier to open door knobs and hold things without dropping them.
  • Hold a soft ball in your palm and squeeze it as hard as you can.
  • Hold for a few seconds and release.
  • Repeat 10 to 15 times on each hand. Do this exercise two to three times a week, but rest your hands for 48 hours between sessions. Don't do this exercise if your thumb joint is damaged.
Below are links to several of these exercises including some pictures.

Sunday, March 2, 2014

Clinical Trial; Additional info on NIH

On Saturday morning, Dr. Kenneth Fischbeck from the National Institutes of Health was the guest for the KDA chat room. Dr. Fischbeck is a leading researcher, professor and educator on the subject of Kennedy's Disease. The chat focused on two current NIH research projects for finding a treatment for Kennedy’s Disease. Below are some excerpts from the chat. The entire chat can be found on the KDA website.

  • We are just starting an NIH trial with the drug from Novartis. Our trial is with a compound called BVS857 that Novartris has under development that activates the IGF-1 pathway. It fits with studies in our group at the NIH that have shown a benefit of IGF-1 in mouse versions of KD. It's pretty exciting for us to get to this stage, the result of several years of work with the mice in our lab and over a year and a half of working on it with the folks at Novartis. The BVS trial will also include several sites in Europe , in Italy, Germany, and Denmark.
  • BVS is a version of IGF-1 that should work on the muscles and also should help to protect motor neurons. IGF-1 (and we expect BVS) helps to stimulate muscle growth. It also should help by increasing the breakdown of the mutant androgen receptor protein. BVS is a new drug that has not yet been approved by the FDA.
  • We are starting with 2 KD patients from this area to make sure it's safe. The first is due to get the first dose on Tuesday. We'll be recruiting 6 more in July (if all goes well) and another 30 next January. The trial has 2 parts. Part A tests increasing doses for safety & tolerability. Part B tests the highest tolerated dose for efficacy over a 12-week period. The idea is that BVS would be given by injection, like insulin. We are planning on weekly injections (our best guess at present). We'll have to see how long the drug stays in the bloodstream in this trial. We may wind up giving it more or less often than weekly if it works.
  • In Part A the patients will get injections with gradually increasing doses every 2 weeks. We currently plan to give injections once a week for Part B. We will randomize Part B patients: 2:1, that is, 20 on drug and 10 on a placebo. The placebo is needed for comparison to test whether the drug is really working. Part B, with the 30 patients, will involve 12 weeks of treatment. It is our hope that we will see a benefit in 3 months. Our time frame is to finish Part A (which is just starting now) by the end of this year, and part B by the end of 2015.
  • Possible side effects are low blood sugar (like with insulin) at high doses. Also, IGF-1 (and BVS) at high doses have caused facial weakness (Bell's palsy). These are two things we are trying to be careful about by keeping the doses low and advancing slowly. Also, we are only giving the drug to people with low IGF-1 to begin with. Most KD patients have low IGF-1.
  • In Part B we will be using thigh muscle MRI as a way to confirm that the drug is increasing muscle growth. We'll also be testing muscle strength and function, and having patients fill out questionnaires to see how strong they feel.
  • For the BVS study, we are taking patients who have some weakness and are still able to walk for at least 2 minutes, with or without a cane. We decided to test BVS first in the range of patients who are weak but still able to walk, but the hope is that it would also help patients who are weaker and perhaps those who do not yet have muscle weakness (to slow or prevent the onset). Our hope is that BVS will also help patients who are wheelchair bound, but we'll have to see whether it works in patients who are able to walk first. For safety reasons, we are having the patients in the US come to the NIH weekly for the injections and follow-up (we cover the travel expenses). To see if you are eligible, you can contact Angela Kokkinis at the NIH: or by telephone: 1-301-451-8146. We have only selected the first two subjects for the BVS trial. There will be plenty of opportunity for patients to join in later this year and next, for those who are able to get to the NIH or one of the European sites on a weekly basis. If you live outside the US, the best bet is to contact one of the sites in Europe, which should be coming online in the next few months. For those interested in participating, but are currently taking Avodart (dutasteride): The rules of the trial require that the patients be off androgens & anti-androgens such as dutasteride for at least 3 months before starting. The other inclusion & exclusion criteria are listed on the website, or you can ask Angela.
  • If the current trial is successful, then there would probably be follow up studies in more places. There is a small chance the FDA would approve the drug if it has a strong effect in this study, but they usually like to have at least two positive studies for approval.
  • The trial has been posted publically on the website (you can search under "BVS857" or "Kennedy's disease") and on the NIH Clinical Center website. The company has not yet made public the details of the drugs composition, pending a patent application.
  • Reference other trials: Laura Bott and Cartlo Rinaldi in our lab have been working on ASC-JM17 and ASC-J9 in mice, and they have some interesting results. They were able to confirm that both drugs have a benefit in mice, although not as strong an effect as reported previously. They are working out the mechanism of action, which should help in developing a more potent drug.