Alice Grange:
Hi WVgal,
A few questions: How severe is it in you and your son? What areas are you, (and your son), restricted in, in your movements or abilities? Do you need or use any mobility aids?
I'd say it's moderate for us. As I said, many people can have this and not even know it. At the opposite end of the spectrum, some people end up disabled by it. It really doesn't affect our lives too much at this point, thankfully. My father, at 70, is still very active and can do things that confound people half his age. But he did injure his knee a few years ago and hasn't been able to rebuild the strength in it like he should have. My brother has had two surgeries on his shoulder, but despite the fact that he's quite athletic he still has problems with it.
Mine is worse in my legs. I have poor balance and find standing or walking too long to be uncomfortable. I get pain in my hips and down my right leg at times, esp. when the weather is changing. Of course, I have also had some injuries to this part of my body, so it can be hard to differentiate which symptoms come from that and which from the FSH. A kind of funny side effect in me is that my face has no wrinkles at all. This often happens with this condition. Which explains in part my almost freakish youthful expression. :) I would like to be stronger overall, but I can do just about anything I really want to. I split wood, carry 50-lb. feed bags, work as a nurse. The only thing I've never been able to do much is run. I love running but I get shin splints something fierce. So I walk instead.
My son is more affected in his right shoulder. His shoulder is weak and dislocates frequently. He gets pain down the right side of his neck and into the shoulder pretty often. He could have surgery to stabilize the shoulder, but I'd rather see complete healing. He works construction, so you can see that he hasn't been limited much, but he experiences a lot of discomfort.
Neither of us use mobility aids. You wouldn't know to look at us that we have a problem at all. Mostly our issue is chronic pain.
How long and how often have you been using EFT?
Only a couple of months, and not daily on this specific issue. Just when I am experiencing pain. I have really improved the discomfort in my right leg with tapping. It had gotten to the point that I couldn't stand on one leg, or lift that leg so that the thigh was parallel to the floor (which made putting my pants on in the morning interesting). That problem is gone now, although sometimes I have a little pain there.
What are the phrases you are using?
Mostly, I have directed my tapping specifically to any pain I'm feeling at the moment. Such as, "this 7/10 ache in my right thigh."
My son hasn't tapped at all -- he thinks it's silly.
Why are you not gone into to the psychology of it?
Probably because it just doesn't bother me enough to do the work, I'd say.
I've tapped on emotional issues concerning other issues in my life that I consider more pressing.
What happens when you exercise? Do your muscles strengthen or weaken? And, if they strengthen, what are the exercises you are doing?
Not much, actually. For instance, I have never been able to do more than a couple of pushups. Even if I do them every day for months on end, I still can't do more than, say, five. Once the muscle is gone, or so the story goes (I'm not willing to believe it) the muscle is gone and there is not much you can do. All conventional medicine can hope for is to slow the progression by maintaining the strength you still have.
I am choosing to believe that I will find a way to reverse the deterioration. The best thing you can do, in my opinion, is to never give up and keep as active as possible. I refuse to let this disease define me or limit me.
Lastly, are you male, or female?
I'm female, hence "WVgal". :) Not that it's really relevant. This condition is not sex-linked. It is an autosomal dominant trait, which means that any child of a parent with the condition has a 50% chance of having it. It does tend to manifest earlier and be more severe in males than females, but other than that there are no particular ethnic, racial, or other types of distribution.
I really appreciate your response. You are the first person to respond positively.
Would you be open to talking to my client, John, on the telephone or by email?
He would like to compare notes with you.
Many, many thanks for your response.
You're welcome. I'll have to think about that one. I'll get back to you. :)