I am here to learn how others cope with ... - My MSAA Community

My MSAA Community
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I am here to learn how others cope with the everyday living of MS.

Hello, I am a 67-year-old Californian happy to chat about this disease with anyone. I spent 14 years using a wheelchair out of the house, to be honest sometimes in the house for speed or because of fatigue. About 6 years ago my right foot started to work again a little bit, 4 years ago I joined the MS Achievement Center here in Sacramento for a 5 hr day of body and mind training. I now use the walker most times but have a little power chair in the trunk for the long days or when the fatigue would make miss what I was walking to do.

I have been diagnosed for over 20 years and am still R/R. I know that because after taking Betaseron for about 8 years I was told I was moving on to Secondary Progressive and because I was "so" educated about what was then the "ABC"s" of disease-modifying drugs I chose to go off even though the doctor wasn't as sure as I was that Betaseron was only for R/R . Almost two years later I had one of my worst relapses so after a brief try with Tysabri I went back to Betaseron which had worked all those years at keeping relapses away, until last year when I just kept having more bad days than good and the MRI showed active lesions and so I am now back on Tysabri.

I guess I confessed all these drugs I have been on forever to encourage anyone who is diagnosed to heed the words "get on a DMD". There are so many available now from shots, pills to infusions. You might not feel better like taking an aspirin, but it stops progression and maybe keeps you safer like blood pressure medicine keeps people from heart attacks or strokes and the way you know it's working is you don't have a heart attack or stroke.

So I am interested in what clues other use to keep moving and enjoying the life we have.

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Welcome here to this precious, supportive family of Warrior MSers, I am sorry about your more lesions, & first off I am 48Yrs. Old& i have PPMS, under diagnosed for almost 11yrs. Now, but could have had RR. In my 20's, so really almost really 17yrs. Now, many of our bodies/brains cannot handle the DMT's prescribed, so we follow like Dr. Teri Wahls Protocal, who had SPMS & reversed it by all Natural healing diet +excersise. & is out of her scooter & back on her bikey..πŸ‘πŸ˜πŸ˜So, some of us do our own. But thanks for the info, & Many Blessings to U!β€πŸ‘πŸ‘πŸ˜--Jazzyinco

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Thanks for the welcome. I have friends that have or are still using the Wahls Protocol. We are all so different and MS affects us all differently. Whatever works for anyone that doesn't harm them is wonderful. For one friend it was Jazzercise.

I understand that the DMT's are not right for everyone but there are so many more available now and if you are one of the lucky ones that have no problems and it stops the pac men from chewing on you mylen and doing that damage then it as they say at the "drug dinners" it's a "great time to have MS" ( that was supposed to be said with a grin but I am not that social media savvy)

Thanks again

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Welcome to a great group of helpful, supportive people who will quickly become family.

Your words have a lot of wisdom and are well worth heeding. It's great to know that you have found a DMT that seems to be working and which you are comfortable with.

Having dealt with MS for so long, I'm sure you'll have lots of wisdom to share. We're glad to get to know you.

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Welcome to our group hibean. I am going to turn 70 years in October and was diagnosed with RRMS in 2005. I was on Copaxone until September of last year, I had read somewhere that as people age they may not need a DMT if the disease is stable. I consulted my MS specialist who looked at all my MRIs for the last 12 years and agreed with me. So I tried 6 months with no DMT, did another MRI and am good to go drug free for another year. I will get another MRI in January and see doctor in February. I exercise with a trainer once a week which has really helped me, I try to eat healthy but that doesn’t happen as often as it should. I stay as stress free as I can, do deep breathing exercises and meditate. πŸ˜€β€οΈ

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Wow, that sounds like you have a handle on how to make it work. Good Luck. I too know all the nutritious foods we should eat but

am not always so good at eating just them. Exercise in some way is important too. I am lucky to live where there is an Achievement Center I go to once a week.

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Welcome to our family hibean from Fancy1959! You have found a safe place to come and belong to. The people here are some of the kindest, most caring, and compassionate people I have ever met. It's safe place to come and ask questions, voice concerns, find out information, or simply speak to others who understand what you're going through. I'm glad you found us!

There is so very many different topics we could touch on to answer the question that you posed to us. I think the very best way for you to find out the information you're looking for is to join in our chat room and make post like you did and reply to other post. The more you interact with us the quicker we will get to know you and you will get to know us! I am certain there is much we can learn from each other!

In the meantime I totally agree with your assessment that it is important we stay on our dmts no matter what our age. They are designed as a safety net to keep Ms from sneaking in and doing silent damage to our central nervous system. Once the disabilities are acquired it is often hard to come back to the level you were prior to the attack. Also I agree that we need to watch our diet and use a good balanced diet. One of the big popular ones for Ms right now is the Wahl diet. The Mediterranean diet is also one frequently used. Besides diet make sure you get plenty of sleep, something I fight this terribly, exercise as your disabilities permits, and at all cost de-stress your life as much as possible.

I look forward to talking to you in the near future. Until we speak again please take care and remember that together we are stronger! Fancy.

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Hi there Hibean, welcome..and yes its an amazing group.I have a vitamin routine that for me and my particular issues(a few) are a major role in my stability and mental health as well.Somtache surgeries brought me to a poser or gel vitamins seeing how hard tablets don't work well for me.I sue compression as I need it, I soak a lot, plenty of fluids.Vitamin D testing and use(genetic vit d defiency) and beauty and laughter....Furry buddies help them and me.When I can feel a balance I feel so much better on my MS.One think im trying to do more of is counting blessings all thru the day.It helps in many ways for me and also refreshes the ideas to cope with MS as I think of what others have said or done.Meditaion has been shown to change, give comfort to illness of anykind.I am curious about accupunture a lot, because I know massage also has been beneficial.Sleep is a must.Food/nutrition etc....This group surely has made my cells register great and my heart stronger....support and supporting others is a win win....best wishes.

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Welcome hibean! I think it may be pure stubbornness that keeps me moving and enjoying life (however altered or difficult those things become).

It's pretty amazing to be blessed with so many drug options!

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Welcome to the group. My biggest issues right now are fatigue and short-term and working memory issues. Occasionally vertigo and writing by hand. Sometimes I get the laugh on MS because I'm ambidextrous, one one hand starts having too much difficulty writing I just switch and use the other one. 😁 I did that once while in a leadership course before I was finally diagnosed. I had been writing something on a large white board when my right arm just stopped working. Everyone noticed it would have been really hard not to notice. But I just took the marker and finished writing with the left hand. People were so amazed by that they never asked what the deal was with the right hand. 😁

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I agree. I first thought that DMD wasn't that important for my RRMS because I wasn't feeling any different. Unfortunately it took me to be diagnosed with SPMS to realize symptoms will not forever remit back even a little. Noone knows for sure, but I feel that every shot I skipped, being copaxone or avonex, I could have delayed progression at least a bit more

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