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A forum to talk about the general challenges of daily life with MS.

Postby maynaka » Tue Jun 07, 2011 1:16 pm

Although in the mid west heat and humidity normally go hand in hand. The humidity isn't as bad as it has been. Rather strange actually.

I also am old school when it comes to units of measurements. Fortunately, here in the US they note both units of measurements when it comes to weather, weight, etc.
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Postby robbie » Wed Jun 08, 2011 7:13 am

are you still able to drive ? (munchkin, maynaka)
Had ms for over 19 years now.
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Postby munchkin » Wed Jun 08, 2011 7:33 am

At this point I'm still driving, though I don't drive often anymore. It is one of the things that I really want to hang onto, just that little bit of freedom.

When I first started to drive I just wanted to get out in the car, crank up the radio with some good tunes and drive. After all these years that's still something I enjoy.

Can you drive Robbie?
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Postby robbie » Wed Jun 08, 2011 8:32 am

haven't been able to since 1995 my neuro decided it was best thought about getting hand controls for my car so i could keep my licence but it started affectng my hands to much for that too
the freedom go anywhere on my own is not in my life anymore
Had ms for over 19 years now.
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Postby maynaka » Wed Jun 08, 2011 8:57 am

I stopped driving in 2006. I hated to give it up.

It is most definitely the loss of a big freedom.

May I reminisce for a moment? My car was a 2000 Grand Am GT. It's a 2 door (sporty version), silver, with gray leather interior. It's still in mint condition (thanks to my husband, not me). Under 40K miles (I just drove to the train station).

We paid 22K for it new, last year we had an offer for it of 25K. It's still sitting in the garage, we drive it from time to time. That and shopping again keeps me pushing myself.

What was your favorite cars?
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Postby munchkin » Thu Jun 09, 2011 5:59 am

I started driving as a 30 yr old and bought my first car when I got my license. It was a used beat up Sprint and boy did I have fun with that little car. It was a great city car, I could park it anywhere.

We would take it on the highway and the interior fabric roof would start to flutter, it was a touch scary. The frame was bent and the whole car vibrated when you got it to 110 kph.

It's funny the things you hold close in memories and what is important in our lives. The ability to go where we want when we want is such a basic need.

Robbie, can you use a scooter at all and is your community scooter friendly?
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Postby maynaka » Thu Jun 09, 2011 7:31 am

Munchkin,

I think you summed it up well.

The Grand Am means a lot to me because it was a gift from my husband for a major accomplishment. I was also healthy enough at the time to drive with the sunroof open, blasting the stereo and feeling great.

To lose the freedom of not driving again was very hard. Like so many others, I think the gradual loss of things you've always taken for granted
is the hardest to take.

PS - I still keep my drivers license current.
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Postby robbie » Thu Jun 09, 2011 9:59 am

Robbie, can you use a scooter at all and is your community scooter friendly?

i live in the country and need to get to the car and around the yard don't use as much anymore
Had ms for over 19 years now.
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Postby munchkin » Fri Jun 10, 2011 7:39 am

That must be very frustrating for you, Robbie. It really is a rotten disease. It seems to be pretty much a crap shoot on how much someone will be affected.

M - You are so right, when you look at what you are losing or have lost it's heartbreaking. So far, I'm still pretty functional in a take care of myself way and that's what I'm hanging onto.

It sounds like that car was a lot of fun and gives some really good memories. That's wonderful that you are keeping your license, I don't think I would let mine go either. Keeping the faith so to speak.
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Postby robbie » Fri Jun 10, 2011 8:58 am

crap shoot on how much someone will be affected.


it's not really a big deal for alot of people especialy for the first while, there is no urgency with being diagnosed with ms the doctor knows it could be years and years before any serious problems come up its not like you could die from it in 6 months
Had ms for over 19 years now.
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Postby robbie » Sat Jun 11, 2011 8:19 am

there is some crazy shit going on upstairs, down here in the basement it's calm and peacefull, why argue were all fucked anyway!!
Had ms for over 19 years now.
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Postby maynaka » Sat Jun 11, 2011 8:22 am

I don't know who brought it up earlier, but a few good points were made...

This is probably a combination of several diseases. Is there any other disease out there for which research has been done for decades and no one can even pinpoint the cause? I really don't know, is there?

Also, it's a bigger travesty that no one can with any certainty say that any of these drugs for which we're being charged in upwards of 40K to 50K a year even work. Drug companies and neuros use the infamous "it slows down the progression". Then when you get worse anyway they say "yes, but it could have been faster without the drug".

To recap, after decades of research and promises, no one knows the cause of this disease, there is no drug that shows improvement for the majority of MS sufferers and no one can even get an accurate count of the number of people who have this disease.

Sorry, I just had to vent. Thanks for listening.

M
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Postby robbie » Sat Jun 11, 2011 9:18 am

Then when you get worse anyway they say "yes, but it could have been faster without the drug

thats exactly what my neuro said to me
charged in upwards of 40K to 50K a year

MS is a licence to print money
Had ms for over 19 years now.
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Postby munchkin » Sun Jun 12, 2011 6:25 am

It's really upsetting when you start to read studies that refute the immune theory and the neuro's get angry. I find it hard to believe that they cannot even consider other factors.

Our neuros push drugs that have very little benefit and a lot of negative side effects (and cost a lot of money) or tell us there is nothing. I made a comment to my neuro about the reports on the crab drugs and their lack of effect. His answer was that if I was under 30 a couple of years extra without disability would be very important. I didn't ask him about the risk to my liver and the side effects that I would have to endure for that maybe 2 years.

I just read an article in our paper about kids between the ages of 12 - 17 who are having stomach-shrinking operations. There are major risks for adults and it is unknown in teens until now. The research into CCSVI gets treated like we are taking out hearts and then trying to put them back in and yet they are giving kids surgery that is extremely dangerous.

Sorry, I had to rant a bit. After having CCSVI and then trying to deal with the Canadian Health system it just pisses me off to no end.

Getting angry sometimes does help, in the long run I'm not sure what overall good it does. But I have fired off a few very pointed letters.
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Postby robbie » Tue Jun 14, 2011 12:35 pm

it comes like a wave a bunch of little ones and then a real big one it comes likle a wave
Had ms for over 19 years now.
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