PD & Osteoporosis: I have PD & Osteoporosis... - Cure Parkinson's

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PD & Osteoporosis

jdc3 profile image
jdc3
34 Replies

I have PD & Osteoporosis. I also have very low levels of vitamin D and supplements aren't helping much. My Dr. wants me to get at least 15 minutes of direct sunlight per day to help get my vitamin D up. I told him that people with Parkinson's have an elevated chance of getting skin cancer, so I'm hesitant - especially being very fair skinned and living in the tropics.

His response to this was to tell me that people with PD are also prone to falling and my spine has already lost bone density. A simple fall could result in a broken back. He said it's really up to me to decide which option 'feels' better to me.

I'm totally confused about how to make this decision. Any advice?

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jdc3
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34 Replies
Fredzu profile image
Fredzu

If you make decisions based upon percentages, you will need an abacus. My prayer is that you live where your heart will lead you. That will be your greatest victory!

FJohn1

laglag profile image
laglag

I've read that if you just stay out until you're light pink (maybe 15 minutes), you should be ok. My mom passed away from melanoma & my brother has had melanoma & I have PD & I still go out in the sun when it's out. Just don't overdo it.

advancedPDguy profile image
advancedPDguy in reply tolaglag

Wrong! See my reply to this patient. Thanks.

qazwsx11 profile image
qazwsx11

How much vitamin D are you taking? When I was really low couple of years ago I got a prescription for high dose Vitamin D3 and took care of it. I was living in the tropics and got plenty (1+hours) of sun exposure every day but it that was not doing anything for my D levels. I continue to take lower dose but still relatively high compared to regular supplements. Regular supplements are not enough. Sun exposure will not get you back on track ether even though can't think of why 15 minutes a day without sunscreen in the sun can be harmful.

park_bear profile image
park_bear in reply toqazwsx11

Agree - if your vitamin D blood levels are too low then you need to take more. I get an hour a day in the sunny desert and still take 5000 IU vitamin D/day to get good blood levels.

If you have osteoporosis you also need to be supplementing vitamins K1 & K2, silica, and boron. See: tinyurl.com/hya5dwd

advancedPDguy profile image
advancedPDguy in reply toqazwsx11

No amount of sun exposure is safe, particularly for people with white skin.

ryanJames1 profile image
ryanJames1

Maybe try early morning and late afternoons when there is less chance of being burnt

akgirlsrock profile image
akgirlsrock

Research boron from borax makes bones stronger and I think iodine, also Sulfur. YouTube videos on the above mentioned. :) vitamin k2 with D3.

park_bear profile image
park_bear in reply toakgirlsrock

K1&K2, D3, boron and silica. Silica is found in beer and a plant known as horsetail.

JohnPepper profile image
JohnPepper

Hi jdc. The best advice I can give you for both your Pd and your osteoporosis is to start doing fast walking. Walking is the best and safest exercise for making your bones stronger and fast walking produces GDNF in the brain and that repairs the damaged brain cells and you start to get better. It is a slow process but it works.

If you want to learn more, at no expense to yourself you can learn how I have been able to reverse my Pd symptoms to the extent that I have not needed to take any Pd medication for the past 14 years and have not needed to see a neurologist in that time either. Look at my website - reverseparkinsons.net for more information.

I have had many falls, through carelessness, and I am now 82 years old. I fell last Saturday, the first time in many months. I did not break anything, and have never broken anything when falling. My bones are strong, because of the walking.

I would recommend that you walk with someone holding your left arm firmly in his/her right arm, so that you don't fall, until you feel safe enough to walk on your own.

Good luck!

jdc3 profile image
jdc3 in reply toJohnPepper

I bought your book, John, now I just have to start following your advice!

Lynnie1 profile image
Lynnie1 in reply toJohnPepper

JohnPepper I just ordered your book for my guy! Am looking forward to receiving it!

JohnPepper profile image
JohnPepper in reply toLynnie1

Hi Linda. I hope you enjoy reading it, and more to the point, I hope you get a lot of benefit from it.

HeartSong profile image
HeartSong in reply toJohnPepper

John, I'd be really interested in knowing about your bone density scores. Have you ever had a bone density scan? Sorry to get so personal, but if you have had a scan, could you share your scores? Thanks.

JohnPepper profile image
JohnPepper in reply toHeartSong

Hi Heartsong. No! I have never had the need to have a bone scan. I have been doing a lot of exercise since 1968, because of serious back problems. I had been advised to strengthen my core muscles to solve the back problems, which it did, and I carried on going to the gym for one hour every day for six days a week until 1994. Then I stopped going to the gym and joined RUN/WALK for LIFE, where I learned to walk fast for only 3 times a week for one hour each session. I have continued this ever since. I do the walking now early in the mornings, before it gets too hot.

Exercise, especially walking improves bone density and even though I have fallen quite often, I have never broken any bones. I have broken ribs on two occasions, while skiing, but those were very heavy falls on ice.

michaela13 profile image
michaela13

I take 5,000 units a day andwhen tested I'm just in range of normal amount.

BUZZ1397 profile image
BUZZ1397

Living in a tropical zone where sunlight is plentiful it is rare I think to have low vitamin D unless you are suffering from a chronic disease or alcoholic or vegetarian and never go out in the day light. Depletion of bone minerals is common among individuals that habitually drink more alcohol containing beverages than they should. I read your other post and that you are a recovering alcoholic. I wish you success in your desire to abstain. Improving one's bone health while suffering the bone mineral depleting effect of alcoholism would be unlikely. Why don't you follow doctor's suggestion of sun exposure. I recommend also eating fresh meat, oily fishes, drinking milk...etc. If you can take a daily mineral supplement that contains bone minerals calcium, phosphorus, magnesium...etc and vit D3 with a big meal daily to build up your calciferol level. Have your calciferol level retested in 4 or 5 months, it takes a long time to see a difference. Caution, one can over do the supplemental D3 tablets, it can cause fatigue and confusion to take too large of a supplement of D3. An optimal amount of Supplemental D3 to maintain the suggested healthy level (50-65 ) varies from individual to individual. My intake is around 4000 iu and my wife's is just 500 iu, for example. She is fair-skinned like yourself. Be well my fellow PWPD.

jdc3 profile image
jdc3 in reply toBUZZ1397

I've not had a drink for 30 years. I work from 4PM- 3AM, so I don't see much sun. I've also had some problem with basal cell carcinoma, so that has made me want to avoid the sun even more. I live like a vampire. I am a vegetarian, but I drink a lot of milk in lattes!

park_bear profile image
park_bear in reply tojdc3

I had basosquamous carcinoma, a rare combination: "Basosquamous carcinoma is considered an aggressive type of basal cell carcinoma (BCC) with an increased risk of recurrence and metastases "

I do continue to enjoy the outdoors and have not had a recurrence.

Ruffinglgo profile image
Ruffinglgo

15 minutes a day should be OK. My D3 levels are subtherapeutic and I walk daily and take 2000 IU 5 days a week. I am increasing to 5000 IU daily taking 2500 in the morning and 2500 in the afternoon. Taking Forteo for bone density and scan this week shows improvement in spine hips and neck. I am more afraid of fracture risk than skin cancer.

Lynnie1 profile image
Lynnie1

Hi jdc3 check out this website for a possible solution. It's a Happy Light light box , sadlightsreview.com/sad-lig...

Also, here's a link from a Parkinson's website:

parkinson.org/find-help/blo...

vincea profile image
vincea

I have PD and have had lentigo maligna melanoma in 2005 . . . I still get 15 minutes of sun (when it is out) per day. I'd rather take my chances of getting another case of melanoma than fall and break a hip or my back - I can't imagine getting Alzheimer's or not being able to walk.

adrienneb profile image
adrienneb

I take raloxifene (Evista) by prescription once a day, along with vitamin D, and my osteoporosis has been arrested. Would that be a possibility for you?

jdc3 profile image
jdc3 in reply toadrienneb

Thanks, I have to do a little research - I don't know what Evista is. Might not be available here in Thailand.

jdc3 profile image
jdc3 in reply toadrienneb

Just looked it up at drugs.com, and they said: Evista is not for use in men.

adrienneb profile image
adrienneb

Sorry! It is an estrogen analog, and clearly not useful for men!

Noella21 profile image
Noella21

To get the vitamin D you can still wear protective clothing. I am pretty sure you obsorb it through your eyes. You can go for a walk do not sit still in the sun. I may be wrong on this. That is what my oncologist told me to do go for a walk it is good for your bones and to get vitamin D.

qazwsx11 profile image
qazwsx11 in reply toNoella21

This is not true. You need skin exposure as that's where vitamin D is synthesized. Covering the skin or applying sun protection will prevent vitamin D synthesis.

silvestrov profile image
silvestrov

Both osteoporosis and vitamin D deficiency may have a common origin: magnesium deficiency.

Magnesium deficit - overlooked cause of low vitamin D status?

"Deng et al. [5] used two large National Health and Nutrition Examination Surveys data sets to assess interactions between Mg intake, vitamin D status and outcome. According to the Institute of Medicine (IOM) classification, circulating 25-hydroxyvitamin D (25OHD), the generally accepted indicator of vitamin D status, was within the deficit range (<12 ng/ml) in 12% of participants and the insufficiency range (12 to 20 ng/ml) [6] in 30%. Mean energy-adjusted total Mg intake (dietary and supplemental) was clearly below the recommended daily allowance, which is between 310 and 420 mg depending on age and gender [7]. High Mg intake was associated with reduced risk of vitamin D deficit or insufficiency."

bmcmedicine.biomedcentral.c...

No Clear Role For Vitamin D!

Carolyn Dean MD ND | Sunday, June 29, 2014

"So, if you take Vitamin D in high doses and don’t have enough magnesium, zinc, Vitamin K2, Vitamin A or boron, then Vitamin D isn’t going to work. Or in the worst case scenario, the excess Vitamin D gives you symptoms of deficiency of these nutrients."

drcarolyndean.com/2014/06/n...

Magnesium and Osteoporosis: Current State of Knowledge and Future Research Directions

"Magnesium deficiency contributes to osteoporosis directly by acting on crystal formation and on bone cells and indirectly by impacting on the secretion and the activity of parathyroid hormone and by promoting low grade inflammation."

ncbi.nlm.nih.gov/pmc/articl...

Magnesium, Calcium, and Reversing Osteoporosis

drlam.com/blog/reversing-os...

Many years ago Dr. Lam's advice and vitamin.......supplementation cured an adrenal gland problem I had. He is a smart man and knows his stuff.

Below is an article entitled "Magnesium May Help Prevent Hip Fractures" by Dr. Mercola. At the bottom he notes the various forms of magnesium and their differences from each other:

articles.mercola.com/sites/...

"Magnesium glycinate is a chelated form of magnesium that tends to provide the highest levels of absorption and bioavailability and is typically considered ideal for those who are trying to correct a deficiency."

"Magnesium threonate is a newer, emerging type of magnesium supplement that appears promising, primarily due to its superior ability to penetrate the mitochondrial membrane."

"Magnesium chloride / magnesium lactate contain only 12 percent magnesium, but has better absorption than others, such as magnesium oxide, which contains five times more magnesium."

"Magnesium sulfate / magnesium hydroxide (milk of magnesia) are typically used as a laxative. Be aware that it's easy to overdose on these, so ONLY take as directed

."

"Magnesium carbonate, which has antacid properties, contains 45 percent magnesium."

"Magnesium taurate contains a combination of magnesium and taurine, an amino acid. Together, they tend to provide a calming effect on your body and mind."

"Magnesium citrate is magnesium with citric acid, which has laxative properties."

"Magnesium oxide is a non-chelated type of magnesium, bound to negatively charged oxygen (oxide). It contains 60 percent magnesium and has stool-softening properties."

I had a clinically severe Vit D deficiency 4 yrs ago. I was prescribed a high dosage of a Vit D supplement which I faithfully took. It took 1 yr to reach a normal level and 2 more years to reach therapeutic levels. I live in the South so get plenty of sun walking my dog 2 times a day yet still had a severe deficiency. It can take a long time for some people to reach the desired levels so patience & perseverance is needed.

HeartSong profile image
HeartSong

JDC3, I'm in a similar boat. I have PD, osteoporosis, and a vitamin D count on the low side. I do take a vitamin D supplement, along with vitamin K2 and Magnesium as well as several vitamins and minerals. However, I have been a night owl most of my life and so haven't spent a lot of time out in the sun. I'm trying to change that so I can get out in the sun more. Like you, I am mindful of having read that people with PD have an elevated chance of getting skin cancer. So, I'm in the process of scheduling an appointment with a dermatologist to get a skin check. I think it's recommended that people with an increased risk get a skin check every year, but I'm not positive about that. If you can get the skin over your entire body checked periodically, that might help put your mind at ease.

Also, here is a website that coaches people on keeping their bones strong without taking drugs. I find it very informative and even though she sells her own line of supplements, I think she runs her entire website and periodic blogs with a lot of integrity. betterbones.com/

park_bear profile image
park_bear in reply toHeartSong

She's OK, she does make clear one needs K2, but otherwise the information is scattered and it is not obvious about the rest of it - one also needs silica and boron: tinyurl.com/hya5dwd

advancedPDguy profile image
advancedPDguy

Your doctor's advice is idiotic, and please quote me. He should stop practicing medicine before he harms another patient, if that is what he told you. You are absolutely correct on all counts: PD patients have a risk of melanoma (the most deadly skin cancer) which is about 3 times higher than the rate for matched controls without PD. Also, the American Academy of Dermatology has stated that there is NO safe amount of sun exposure, meaning that the damage and risk of cancer are cumulative. Although melanoma can occur in areas that get zero sun exposure, such as the crotch, the number one most potent independent risk factor for melanoma is sun exposure, and there is a dose-response effect, meaning the more sun exposure you get, the higher the risk. All this jargon merely proves that avoiding sun exposure to the skin (and the retina) is the best way to avoid deadly melanoma, the fastest-rising malignancy in our sun-worshipping culture.

Most importantly, how much vitamin D did you take and what were your serum levels? I take 2,000 IU (international units) of vitamin D-3 daily (the chemical name is cholecalciferol), where D-3 indicates a particular form of the vitamin D molecule, which is safe at this dose for almost any patient with normal kidney and liver blood tests, but check with your (new) doctor. Even higher doses of vitamin D-3 can be taken, but even healthy patients should be monitored periodically if taking D-3 doses of 4,000 IU per day or more.

I do not recommend "pulsatile" dosing of vitamin D, such as taking 50,000 IU once per week, because there have been issues with this kind of regimen.

My comments are not medical advice or instructions for you, but rather ideas to discuss with a good board-certified internal medicine doctor. A really good one might have the letters FACP after his or her name, which indicates they are a Fellow of the American College of Physicians, like me!

But I cannot recommend your current physician, who should probably be investigated for incompetence, based on your comments.

joycelee profile image
joycelee

Yes, I think you should take a liquid V d, it by a Texas Lab and also v a. Keep moving but rest when you are tired. I have a massable therapy is bright. I will get the name of company for you.

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