Question: How can I get what I need from medical professionals?
Answer: As an occupational therapist and a person with CMT, I have seen the patient-professional relationship from both sides. The relationship works well if both the patient and the professional are competent. It works moderately well if only one of the couple is competent. But all too often, I have seen situations where the patient does not know what to ask for and the professional is unaware of the patient's needs. You cannot "put yourself in your doctor's hands" and assume you will be taken care of. This also goes for OTs, PTs (physiotherapists), nurses, genetic counsellors and/or social workers. If we demand the best medicine has to offer, we must demand a lot of ourselves.

There is not a textbook treatment for CMT. Professionals cannot go to a book and say, "Um-hm, this is what to do on the first visit and this is what to do on the second visit." Our condition is not something acute which can be cured by a prescription (like a strep throat) or surgery (like appendicitis). CMT is chronic and highly variable with symptoms we adjust to over the years. Sometimes we adjust so well that we don't realize there might be a better, more efficient, less painful way of doing something. Sometimes we don't even realize that we should be asking for something.

It is possible that your medical professional has never had a patient with CMT, although, if you go to an MDA sponsored clinic, I hope this is not the case. "Medical treatment," including therapies and appliances, alleviates symptoms but doesn't cure anything. Some medical professionals will find this frustrating (they want to "fix you" but can't) and will therefore engage in pleasant denial with you. "You're looking good, Mr. Jones. How are you feeling?" sounds so much nicer than, "I see you're still having major problems." There is nothing wrong with exchanging pleasantries, and we are all socially conditioned to reply, "Just fine," to any question about our health. But don't forget, you are there to discuss your problems. If your medical professional is unsure of how to assist you, you must be prepared to ask questions which are to the point and will elicit the help you want and need.

What can you do to make to your clinic visit a success? Here are a few suggestions:
1. Write down complaints and questions prior to your visit and make sure they are addressed before you leave. Are you experiencing any new problems or feel there should be solutions to some of your old problems? It doesn't look stupid to refer to a list, it looks prepared.
2. Make sure you understand what you are being told. Some professionals are not good communicators and need to be reminded to state things in everyday terms. Take notes and repeat them for clarification.
3. Ask for it in writing. You won't remember an exercise program, the name of a pain reliever or other details tomorrow. If the information is routine, it may already be written down on a "patient education" form. If it is specific to you, make sure you get it in writing.
4. Educate yourself about CMT. Do you know what type of CMT you have? Do you know the reason for your physical problems? If you are planning a family, do you know your chances of passing on CMT? Read all you can. Join a support group if you feel like it.
5. Educate yourself about what each profession can offer you. Even if you are their only case with CMT, they have treated other folks with similar symptoms: poor standing, balance, decreased stamina, weak grasp and diminished muscle power. If you know what PTs and OTs do, you are in a better position to make sure you are getting the best each professional can offer. If you are unlucky and get a professional who feels that "nothing can be done because your case is progressive" (and if he can't be educated - see No. 6 below), get a new professional.. We shop around for the model of car we want - we can do the same for the medical professional who fits our needs.
6. Do not be afraid to educate your professionals about CMT. If you feel it is "not my job to teach them what they should have learned in school," no one will benefit. Be charitable and realize that, aside from CMT being highly variable, your medical professional has to keep up with hundreds of diagnoses and may not be "on top" of your particular case of CMT. Xerox reprints of articles for them. Explain your symptoms to them. They want to help you, but sometimes need to be told how.
7. If at all possible, try out equipment before purchasing it. There is nothing worse than getting an expensive piece of equipment home and finding it is not for you. Your OT and/or PT should know the right questions to ask you to make sure than any equipment fits your needs and your environment.
8. Become familiar with the many gadgets which are available to make your life easier. Your OT should have catalogues of "health care" equipment. Browse through them and ask questions about any you feel might benefit you. Of particular interest to many folks with CMT are jar openers, easy-grip door knobs and handles which make grasping easier.
9. Last, have a positive attitude about your life and your health. People have enjoyed life with afflictions far worse than CMT. We adapt our environment as much as we can and then we adapt ourselves to function in that environment.

Remember...living well is the best revenge! Your health professional is your partner in helping you learn to live well.

How can I get what I need from my doctor - Zocor side-effect causes noncompliance

Linda asks Dr. Parry: I was talking to a woman recently who has CMT. Her doctor has her on Zocor for cholesterol and she hurts all over. Her shoulders and hips are feeling as if they are loose, she says, and they are very painful. She let him read what you said about statins and he said, "That may well be but you are staying on statins." She is just not going to take them, she hurts so much. So, this doctor, by not working with us, simply forces us into noncompliance. Any thoughts on how we can get our GPs to work with us when we know things can harm us? I agree that the statins may be important for her but if she is in so much pain and nothing has been changed but the type (she took another statin before this and also had bad complications) how can she get her GP to search out other solutions to her high cholesterol levels that may not be so problematic for her?
Dr. Parry replies: I am afraid that there is not much that can be done to improve the practice of doctors who don't want to be interested. I guess one can always seek out another doctor but that is easier said than done. The other end of the spectrum is when doctors won't treat anything in case it hurts the CMT. I have had patients refused dental treatment because the dentist was afraid that something bad might happen. I have no simple answers other than continuing the efforts to educate patients and, through them, their physici