Old Timers

[Lhallgrigsby]

Old timers, I’m reaching out to you because I want to know about your experience with CAMS (complementary alternative medicines) what makes you feel good or bad, food, drink, or supplements, Exercise, yoga, massage, Cannabis, Faith, Meditation or anything else. I ask this question because over the 30+ years you had MS you know how your body reacts to everything. My experience with raw garlic make me feel better the next day, as does Salmon, and Meditation. Alcoholic beverages and Sodas make my spacity worse the next day. Let’s hear it for the good, the bad and the ugly side of things that affect us.

[Kenu]

Besides being on Aubagio, I take 8,000 ui of vitamin D3 daily, multiple vitamin, 14 grams fiber, which seems to help👍 especially vitamin D3 I can really tell it helps my energy. I also due a protein supplement drink every afternoon for a little boost👍. Since my cancer three years ago I due two cans of Jevity vitamin and protein supplement every morning thru a feeding tube to keep my weight up. Yes thru the years I have started to eat better so I believe that’s a big plus 👍. No diet, just better quality food. Prayers and meditation daily and that also is a great help. Thought about marijuana, but it is illegal in Idaho 🤬. I was diagnosed twenty four and half years ago 👍😉🙏😊. Ken 🐾🐾

[jimeka]

Sitting I find increases the spasticity in my right leg. Being outside gives me lots more energy. Drinking a lunch time mug of high strength cocoa stops the fatigued. I would love to try CBD oil but here in the U.K. it’s very hard to get legally. Blessings Jimeka 😊

[Lhallgrigsby in reply to jimeka]

My sitting limit is 2 hours and spacity starts in my right leg. Night is really bad for me because baclofen does not last through the night, but once I get up and moving I'm fine.

[eharoot in reply to Lhallgrigsby]

I keep saying that we need long acting Baclofen

[CalfeeChick CommunityAmbassador in reply to jimeka]

jimeka Lhallgrigsby eharoot I can't even sit in a chair upright for more than a few minutes without my feet going numb and the tingling goes up to at least my knees. I had lunch with some friends today. It took walking a long distance to the restroom before the numbness went away.

[Elizt3]

Does 23 years make me an old timer? I’ve been getting massages for most of that time and I believe it’s helped me manage symptoms. Exercise (I started regularly about 10 years ago and believe it helps keep the spasticity at bay). I drink as much water as I can and keep salt out of my diet as much as possible. I used to enjoy a glass of wine but now it has too much of a negative impact on spasticity and my sleep. ( that one bums me out 😞). That’s what I can think of for now.

[CalfeeChick CommunityAmbassador in reply to Elizt3]

You are doing great! I just started my MS journey 3 yrs. ago. I really tried to improve my diet, but still need a little salt(sea salt) once in a while. I quit drinking alcohol 25 yrs ago when I quit smoking. I associated the two so it worked to just quit both. I became a gym rat, then started long distance bicycling 200-300 miles a week! Then MS numbed my body from the ribs down and brought all my exercise to a quick stop!☹️ I'm starting to exercise more now, but I feel like I'm starting all over like 25 years ago..

[Elizt3 in reply to CalfeeChick]

200-300 per week. Wow!

Can you exercise inside now? Being inside where the temp is more predictable helps me.

[lbenmaor]

I see the Chiropractor every two weeks and take Vitamin D,E,C, B12 and Fish Oil.

I also take alpha Lipoic Acid. Exercise always helps.

Best Wishes,

Leslie

[eharoot in reply to lbenmaor]

did you notice any positive effects from the Lipoic acid. I'm taking 400 mg 2x daily for about 3 months. so far not noticing any

[lbenmaor in reply to eharoot]

You probably need to take 600 mg twice a day. Yes,

it's helped me eliminate having to sleep every afternoon.

Let me know how you do.

[eharoot in reply to lbenmaor]

Neuro said need to do the 400 due to size and age-79, thanks for answering and I will

[lbenmaor in reply to eharoot]

That sounds good to me.

[agate]

MS diagnosed in 1980. I hesitate to try any treatment but I have been taking 5,000 IU of vitamin D3 daily for about 6 years now. This was recommended by my doctor, and I like to think it's been helping me.

[KarenUSA]

I do water aerobics, chair yoga, and the MS Gym videos. I think exercising has helped keep me moving, although I do use a walker.I also have a Baclofen pump for spasticity. I’ve had MS for 20+ years.

[Lhallgrigsby in reply to KarenUSA]

I am interested in getting Baclofen pump, the past few years spacity has amplified. How long is the process, is it done in nero office or hospital. and does it hurt?

[KarenUSA in reply to Lhallgrigsby]

Placing the pump does require surgery done in a hospital. It did not require an overnight stay. There are stitches for the incision for the pump and a few for the catheter into the spinal column. I had my pump replaced last year because the life of the battery was over (6years) and the replacement surgery was no big deal. I’m very satisfied with the pump. I can still get out and do things. The spasticity that remains is like a stiffness that provides some stability. I continue to do exercise classes, travel, and drive. I do use a cane a or a walker when I walk, but the spasticity isn’t painful and I do keep moving. In case you are wondering, I’m 73 years old.

[Lhallgrigsby in reply to KarenUSA]

Thanks for your response, it will help with my decsion.