Newly diagnosed

[1LittleWillow]

The amount of info out there is huge, but much of it seems pretty unhelpful. Is there a "best resources" list anywhere (e.g. books, websites, videos) that someone could point me to? I've already done the learning curve with Parkinson's disease (diagnosed 5 years ago), so I'm comfortable with doing research. I'm a "no pharma unless there's no other choice" kinda gal. My appointment with a rheumatologist isn't for 6 months, so I'd like to get a jump on things. Thank you in advance!

[Fruitandnutcase]

I really like Margaret Martin’s MelioGuide website she is a Canadian physiotherapist who does a lot of work on exercise etc for people with osteoporosis. I always think she is very knowledgeable and sensible. melioguide.com/

The Royal Osteoporosis Society’s website has a lot of information in it too - covers, diet, exercise and the various drugs used to treat osteoporosis. I’ve just noticed you are in the US but food is food and exercise is exercise so I don’t think that will matter.

theros.org.uk/?gclid=Cj0KCQ...

Do you know what your DEXA results are? I suppose a lot will depend on them. Like you I’m a “no meds unless there is no other choice too” person.

I’d say be careful if your doctors try to put you on Prolia as first choice of drug as you can have problems if you try to stop or even just miss a shot - you need to go onto a relay drug straight away and that’s likely to be a bisphosphonate.

Be sure that your doctors check your parathyroid glands ( that’s not the same as your thyroid gland) that can be a cause of osteoporosis and if it is then you want to get that fixed before you start any OP meds, also check for coeliac disease, and various other things that can lead to weak bones. I think you’ll find a list on the ROS site. I’m sure other people will come along with suggestions and there is an American version if this site on Healthunlocked called American Bone Health Good luck with it all.

[1LittleWillow in reply to Fruitandnutcase]

Thanks so much for the reply. I am checking out those resources. I have had high blood calcium since 2014 (possibly before that too), but when I had my PTH checked last year (pre-osteoporosis-diagnosis), it was within the normal range so they said not to worry about it. :/

I'm reading as much as I can here too, great info but a lot to digest. I also have young-onset Parkinson's, so I have to divide my research efforts.

Thanks again for your help! Good luck to you too.

[Southerngirl2787]

I highly recommend Great Bones by R. Keith McCormick, DC. Since you are used to research, then the clinical nature should not scare you off. He is quite a friendly non-medical writer as well. I've read a few other books, thousands of hours on PubMed, and on "expert" sites...but in a nutshell, he has very open, honest, unbiased information. Margaret Martin is great for movement, exercise. I've read so much about the meds, that I have avoided for 10 years....but alas, I've had 8 fractures in 8 months, and am now on Tymlos at the recommendation of my neurosurgeon. He doesn't approve of the other types, and knows me well after 10 years of fusions, tibia nerve transplants, now 8 fractures. I have a new endocrinologist, not sure I'll have her in a few months...she's a drug pusher, won't listen to questions, seems to think she knows better for me. She thinks my next med will be Prolia, hard no. Dr McCormick has good explanations of which one may work best for each of us, and why, but only believes in short term usage, as some of us have no choice. I had a parathyroid tumor missed for 10 years, so it did quite a bit of damage. Finding your root cause of OP is vital, and it's very complex, not simply getting more exercise, eating more non acidic foods, taking a couple supplements. We are all different. Mine was a combo of the parathyroid tumor and hormone replacement therapy was too low, the estradiol in particular. I also have a malabsorption issue, and high metabolism, so I was not getting adequate nutrients.

[1LittleWillow in reply to Southerngirl2787]

Thanks, I'm definitely ordering the book! I'm already looking at potential parathyroid issues. Wow, so sorry to hear about your fractures! I hope the meds help. I'm not thrilled about being a member of yet another club that I really didn't want to join haha, but I'm so glad to find support here. Thank you. 💜