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Old 08-25-2017, 07:17 AM #1
bddouglas bddouglas is offline
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Thumbs down I still hate MS, but I refuse to give up...lol

Hi everyone!

I apologize because I haven't been on much lately. So much has happened. I have been on Provigil to battle the fatigue for a few months now. I saw my neuro last week. He wrote a script for Mirapex 0.125mg TID to help with my tremors and Yes! I can put the bibs in a drawer for now! The Mirapex has worked for my tremors!

We talked about DMD's. He explained that he knows I must be frustrated (having tried and failed 4 DMD's in 13 months). He explained that I have 20+ active lesions bilaterally and a larger active lesion on my brainstem. They have been active since before my MRI in February, 2016. They are still active and there is no change in my MRI. He explained that it is like I have gone untreated because I have not been able to tolerate the medications. Because of my intolerances and other health issues, there is only 1 option left and that is Ocrevus. I was really hoping to hear more data before I had to consider this drug. I am out of options. My symptoms have continued to worsen. I am currently waiting on the infusion center at the hospital in Brunswick to call with an appt.

I have started using my SilverSneakers membership that I receive for free through my Medicare Advantage Plan. It provides me with free membership to gyms and YMCA's all over the country at no cost. I only rode a recumbent bike for about a half hour (3 miles) yesterday, but it is about moving and trying to strengthen, right? I am going to try to go 3-5 times a week and it is a 24/7 gym, I prefer to go while it's staffed just incase. I wear my cooling vest and they are aware that if my legs go numb, I just need time to cool off.

I had been staying with friends about 6 days out of the week, coming home 2 days, 1 night a week so my grandson would know that grandma hasn't abandoned him. last week on the evening that I was home, I was discussing changing my title from my son and brother's name into my name with my son. Then, I was explaining to my son that his stepdaughter was doing the same thing that his son did and lost his phone for doing it (messaging me while I was away from home-stepmom being mean to my grandson) and not being punished the same. I just feel they should be treated equally. My DIL went ballistic! She started screaming at me and threatening me (not the first time for either). I calmly stepped forward and said, "Come on". She came up going for my throat...lol...(I really have to admit that I don't have the sense God gave a pi$$ ant because of MS! There had been a time that I would have beaten her to show her what it felt like. I know I don't have the strength or balance anymore. lol I will not back down from anyone ever again...

My son stepped between us and swept her hands downward. She bounced off of him and fell back into a sitting position and came right back up. She grabbed my son by the throat (her fingers around his adam's apple) with hatred in her eyes. He managed to work her fingers off of his throat, she reached over him and grabbed me by the back of my neck..I calmly said, "That's it, I'm calling 911." I pressed charges and she is supposed to be charged with 3 counts of child endangerment. She left before the house filled with cops (state trooper was the first to arrive, county deputies). I live in the woods...lol....She is supposed to finish moving her stuff out of the house this weekend.

Now, I can have some peace and a lot less stress in my life. I apologize for this being so long, so how is everyone else doing?
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Old 08-25-2017, 10:54 PM #2
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That's great how the Mirapex helps you! I hope Ocrevus has similar good results.

I've heard of Silver Sneakers; it's nice that you are getting the benefit. My basement elliptical and stationary bike will suffice for me. I took the summer off, only recently began working out again, and can really feel the difference.

Not sure I understand the incident with DIL, other than you did the good thing of standing up to her. Sorry it got to the point of charges filed and her moving out (good or bad?). Hope your son is handling all that okay.

Peace in life is a good thing.
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Old 08-26-2017, 08:07 AM #3
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Oh you'd be surprised how much being threatened can give you strength and balance against a bully like that. You'd be feeling it later, I still remember chasing down someone who had broken into my car a few years ago, barefooted and in a bathrobe running down the road in the middle of the night and to think the 2 "suspects" were actually scared of me. But I did get their license plate number to give to the cops and a description of their car .

When the adrenaline wore off I not only couldn't feel my legs very well for the next couple of days but also had scrapped up the bottoms of my feet so bad on the tar I actually had holes in the balls of my feet. Not something I recommend anyone doing for sure, they could have been armed, but at the time I was livid. And that was just over a car... If anyone had tried anything against my GBs!!! I'd be the one wearing cuffs at the end I'm sure and probably would make Liam Neelson's character in Taken look like a soft-hearted teddy bear.

But excellent job standing up to her, and kudos for your son coming between you, with such a violent reaction to that moment, it means abuse has probably been going on for a while and good thing YOU pressed charges so it's not like your son would have a chance to "forgive and forget" and drop them. Though it can be difficult when it's a woman being charged with DV as we're often thought to be weaker sex and incapable of any 'real harm'... ha! And a lot of times guys don't like to admit they're being beaten up by a whittle girl so when it does happen guys are the least likely of all to seek any kind of help. My own grandfather was a perfect example, my grandmother beat him daily, often with deadly intent, but he shrugged it off cause he was a 'man' and she was just a 'woman', damned if he would admit to anyone that she was the cause of his black eyes and split lips.

Oh well a bit of ramble there, I seem to be getting more and more prone to that, ugh... but still just wanted to say good job and good luck to you, your son and your GBs. Hopefully peace will continue and your son and GBs will be happier and healthier now.
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