Loved Ones who support someone with MS Community Group
This group is meant for those who help someone with MS. This would include family, good friends, spouses and caregivers. It is a place to exchange good ideas that may help us in caring for those we love that have this disease.
This list comes mostly from what we have done but a few are tips from others.
1.) Reduce negative effects of main MS C.R.A.B meds (Copaxone, Rebif, Avonex, Betas + Tysabri, etc)
* Take the meds at night
* Really rub hard back and forth across skin with alcohol pad before injecting
* He leaves injection behind his ear (with cap on) to let it warm a while (30 mins) before he injects it so it is not so cold.
* Take motrin 30 mins before hand
2.) Low Dose Naltrexone (LDN: 2-5mg) taken at night really can reduce urinary spasicity and or incontinence. So because you get up less often you get more sleep which reduces risk of diabetes, heart issues and helps mood the next day.
If someone is having incontence issues going to a Jo Ann Fabric and getting a 4 foot long rubber sheet and lying it in bed (sometimes with towel on it) to sleep on is very helpful. Then if there is a slip you just wash the rubber sheet without having to strip the whole bed and wear out the material much faster.
http://www.ncbi.nlm.nih.gov/pubmed/18728058
http://www.ncbi.nlm.nih.gov/pubmed/20695007
3.) This is for Men with MS~ Bio-identical Testosterone + Libido-stim this with mild exercise (walk into/out of work + 10 mins on eliptical) has improved leg muscles that were atrophing before. Plus if you add it with a 10mg Cialis it helps number of erections/climaxes MUCH better than cialis alone.
~ MS research has shown SOME with MS do much better when on sex hormones: males on testosterone and females on female sex hormones. http://www.universityofcalifornia.edu/news/article/8978
4.) Eliptical is much more helpful than treadmil. He had a lot more foot drop issues with the treadmill. Eliptical exercise 10 mins every other day is helping with his endurance walking.
5.) Supplements:
* Life Extension Multivitamin without copper or iron(plenty of B vitamins).
* Fish oil + prime rose oil OR 3-6-9 Omega supplement
* D3 (if you are not on above multivitamin then make sure you are getting enough magnesium, calcium and potassium to help nerve conduction and MUSCLE function)
* Co Enzyme Q10
* Alpha Lipoc Acid (R-ALA) + L-Carnitine (these last 3 help mitochondrial function that makes ATP or FUEL to try to reduce fatigue by small increments)
* Turmeric
* Probiotics (refrigerated)
6.) Do NOT eat anything with GlutaMATE as research has shown people with MS have too much glutamate and when this is out of balance it reduces mitochrian function aka less fuel to rebuild damaged tissue and contributes to fatigue.
* So do NOT eat MSGs.
7.) Reducing gluten, reducing cow milk (use almond or coconut milk which is better) and reducing sugar (alcohol is fermented sugar and simple carbs convert to sugar quickly) have all really helped.
8.) Reduce stress~ Learn to delegate certain tasks to family/friends, prioritize to get a few things done and let go of the need to do others.
Listen to soothing music, snuggle(oxytocin love hormone), LAUGH or take yoga all counter stress hormones or effects of stress.
9.) Stay cool~
* Take luke warm showers
* Stay in AC
* Cooling vests
* Cooling hats http://www.silvereagleoutfitters.com/kula-wide-brim-cooling-hat/
* Chew on frozen fruit (we buy blueberries for $19 per 10lbs freeze and eat over winter). In the summer when it is warmer my hubby eats a few of these frozen blueberries & starts to feel better
10.) Get a arm cane for short walks
Get a 4 wheeled walker with sit down pad and FOOT RESTS for longer walks
http://www.ebay.com/itm/Drive-Medical-Duet-Transport-Chair-Rollator-/320803658816?pt=LH_DefaultDomain_0&var=&hash=item76c12e9685#ht_674wt_944 (thanks StevP for link)
1.) Reduce negative effects of main MS C.R.A.B meds (Copaxone, Rebif, Avonex, Betas + Tysabri, etc)
* Take the meds at night
* Really rub hard back and forth across skin with alcohol pad before injecting
* He leaves injection behind his ear (with cap on) to let it warm a while (30 mins) before he injects it so it is not so cold.
* Take motrin 30 mins before hand
2.) Low Dose Naltrexone (LDN: 2-5mg) taken at night really can reduce urinary spasicity and or incontinence. So because you get up less often you get more sleep which reduces risk of diabetes, heart issues and helps mood the next day.
If someone is having incontence issues going to a Jo Ann Fabric and getting a 4 foot long rubber sheet and lying it in bed (sometimes with towel on it) to sleep on is very helpful. Then if there is a slip you just wash the rubber sheet without having to strip the whole bed and wear out the material much faster.
http://www.ncbi.nlm.nih.gov/pubmed/18728058
http://www.ncbi.nlm.nih.gov/pubmed/20695007
3.) This is for Men with MS~ Bio-identical Testosterone + Libido-stim this with mild exercise (walk into/out of work + 10 mins on eliptical) has improved leg muscles that were atrophing before. Plus if you add it with a 10mg Cialis it helps number of erections/climaxes MUCH better than cialis alone.
~ MS research has shown SOME with MS do much better when on sex hormones: males on testosterone and females on female sex hormones. http://www.universityofcalifornia.edu/news/article/8978
4.) Eliptical is much more helpful than treadmil. He had a lot more foot drop issues with the treadmill. Eliptical exercise 10 mins every other day is helping with his endurance walking.
5.) Supplements:
* Life Extension Multivitamin without copper or iron(plenty of B vitamins).
* Fish oil + prime rose oil OR 3-6-9 Omega supplement
* D3 (if you are not on above multivitamin then make sure you are getting enough magnesium, calcium and potassium to help nerve conduction and MUSCLE function)
* Co Enzyme Q10
* Alpha Lipoc Acid (R-ALA) + L-Carnitine (these last 3 help mitochondrial function that makes ATP or FUEL to try to reduce fatigue by small increments)
* Turmeric
* Probiotics (refrigerated)
6.) Do NOT eat anything with GlutaMATE as research has shown people with MS have too much glutamate and when this is out of balance it reduces mitochrian function aka less fuel to rebuild damaged tissue and contributes to fatigue.
* So do NOT eat MSGs.
7.) Reducing gluten, reducing cow milk (use almond or coconut milk which is better) and reducing sugar (alcohol is fermented sugar and simple carbs convert to sugar quickly) have all really helped.
8.) Reduce stress~ Learn to delegate certain tasks to family/friends, prioritize to get a few things done and let go of the need to do others.
Listen to soothing music, snuggle(oxytocin love hormone), LAUGH or take yoga all counter stress hormones or effects of stress.
9.) Stay cool~
* Take luke warm showers
* Stay in AC
* Cooling vests
* Cooling hats http://www.silvereagleoutfitters.com/kula-wide-brim-cooling-hat/
* Chew on frozen fruit (we buy blueberries for $19 per 10lbs freeze and eat over winter). In the summer when it is warmer my hubby eats a few of these frozen blueberries & starts to feel better
10.) Get a arm cane for short walks
Get a 4 wheeled walker with sit down pad and FOOT RESTS for longer walks
http://www.ebay.com/itm/Drive-Medical-Duet-Transport-Chair-Rollator-/320803658816?pt=LH_DefaultDomain_0&var=&hash=item76c12e9685#ht_674wt_944 (thanks StevP for link)
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I am waiting for info on the next seasons for: Untamed, The Burbs and Happys Place.
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What’s the biggest challenge in your life right now?
If you are not sleeping then see an GP or endo to make sure you are not on meds that cause insomnia. Then test to make sure your melatonin levels are night enough. If you have to take steroids do so in the morning when they normally are emitted by the body to WAKE YOU up and reduce inflammation.
PS to the note above. **Note ~ Some women crave chocolate for the magnesium which is used for many things in the body. If you are craving chocolate or walnuts(have magnesium) then you might be low. If you are low in magneisum it can cause:
* bone density issues(so can low calcium or potassium),
* muscle cramps/ contractions(so can low calcium or potassium),
*numbness,
* fatigue (so can low B12, low iron, not enough sleep, low ATP production by mito ..so many causes for fatigue)
* feeling ANXIOUS is another big symptom of low magnesium.
If you think you are low on any of the above then speak to a doc about general serum level mineral test.
Their doc gave them some advice we have been using for a long time. It is nice to know we are on the right track.
See URL below and the research presented in reply #2.
http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/15822852
More info on #6 above
Info below is on research about MSGs and Aspartame not being good for those with MS.
http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/14076608
More info on #7 above.
See small research study below that showed high blood glucose (sugar) correlated with higher disability
http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/16239152