Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Just a quick comment, Sharon, about something you mentioned about having to wait to get someone to take you because you can't drive... Even if you aren't in a power wheelchair or scooter, mobility vans typically accept riders with canes or folks with walkers who need their services. It bothers me a little when I hear of folks who allow their disability to keep them homebound, withdrawing from friends or society. I sure don't... I suggest you call your city's bus company and see if they offer any transportation services for the disabled [i'll bet they do--it's actually required by law that they do!]. Ask them to mail you their user application form, which will no doubt contain a section that your neurologist (or GP) needs to sign, confirming that you need their service (just like the process of getting a state disabled pass); then there'll be a # you must call a day before you need a ride (usually by 4:30-5pm) to schedule a pick-up in your driveway for the next day, then return trip home later in the day. Subsidized state services like this are there to help people stay independent -- so if you need their services, don't be afraid to apply. You don't have to wait for family to be ready and miss an appointment, or possibly feel like a 'burden'. If you'd like to meet friends at the mall, church, dentist's, doctor's, movies, etc, (or even getting active at city council meetings like me), whatever you like to do... Get independent and book it! Cheers, Rae From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Monday, July 03, 2006 11:01 AMTo: MSersLife Subject: Re: Re: stopping med?/ Mindy That's interesting. I was under the impression that once a person stops Avonex their body creates antibodies so they can't take it again. Apparently that only happens in some cases since you are back on it. I did well on Avonex but I don't know what my neuro is going to suggest when I see him. When I saw him last he wanted me to "seriously consider Tysabri". I don't know when I'll get to see him though because I can't drive any longer and I have to wait for someone to take me. Now for my supplements: I take 6000 units of Pharmaceutical Grade Omega 3 Fish Oil every day. That's a lot but it makes me feel better. (and my good cholesterol is higher). I also take Bilberry (my neuro told me to take it to 'keep from going blind'), B Complex, Vitamin E, Glucosamine with MSM (I swear by this stuff!), Raspberry Leaf and Garlic Oil. How strictly are you following Swank? I'm curious about "immunity problems" with the other CRAB drugs. I wonder what your neuro means? Sharon Re: stopping med?/ I've been back on the Avonex for about 1.5 years. The first six month's is HELL but I've adjusted and now I only have a reaction like every third shot and it's nowhere near as bad as the first six months. I kinda wanted to try something different this time but both my neuro and the other neuro in town believe in Avonex. Something about immunity problems with the others???? Don't really understand the gobbldegook. But I take lots of supplements. ..b12, omega oils, mineral supplements, cranberry, ginko, daily vit, and I even chew an extra vit c tab every day. Many of my vitamins are in liquid form. I really believe in the absorbtion issue. I, also, started the SWANK diet and while haven't stuck to it religiously, I haven't eaten any red meats in four months. Not sure if it's "fixed" my MS but I've lost 28lbs (without excercise) and the whole "low-fat" thing has controlled my irritable bowel syndrome. So...I do believe in nutrition, supplements and the meds!Mindy> > > > > > > When did you stop all CRAB drugs? Just wondering> > > if> > > > it's been long enough for results to show on an> > > MRI.> > > > I felt so good when I stopped Avonex and it > > > lasted> > > > for a good while. But my symptoms have gotten > > > so> > > > much worse in the last year. I sure do regret my> > > > decision to stop Avonex. I fear that I may have> > > > wrecked my life by that decision.> > > > > > > > I sincerely hope you continue to do well, Akiba.> > > > > > > > Sharon> > > > > > > > > > > > > > > > > "Insanity runs in my family. It practically> > > gallops."> > > Cary Grant> > > > > > ____________ _________ _________ _________ _________ __> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 You know...I have no idea how they exactly worded their disapproval but I thought it was somthing along the lines of Avonex being less likely to build immunity. At my next appt., I will have him explain again. Not that it is likely to stay in my head for long but I will try!! About Swank, I'm actually doing great with the oils and the red meats but I'm totally failing on the " dairy fat " thing. However, I'm still losing weight. I just can't give up yogurt, sour cream, cram cheese, cheese, etc. I've actually began purchasing loads more organic type meals, even organic tv dinners (Amy's brand) and don't even notice a difference (except they are pricier). I do watch my the whole grain pasta's and rice really well. My family is used to brown spaghetti (with turkey!) Mindy -- In MSersLife , Sharon Marsden wrote: > > That's interesting. I was under the impression that once a person stops Avonex their body creates antibodies so they can't take it again. Apparently that only happens in some cases since you are back on it. I did well on Avonex but I don't know what my neuro is going to suggest when I see him. When I saw him last he wanted me to " seriously consider Tysabri " . I don't know when I'll get to see him though because I can't drive any longer and I have to wait for someone to take me. > > Now for my supplements: I take 6000 units of Pharmaceutical Grade Omega 3 Fish Oil every day. That's a lot but it makes me feel better. (and my good cholesterol is higher). I also take Bilberry (my neuro told me to take it to 'keep from going blind'), B Complex, Vitamin E, Glucosamine with MSM (I swear by this stuff!), Raspberry Leaf and Garlic Oil. > > How strictly are you following Swank? > > I'm curious about " immunity problems " with the other CRAB drugs. I wonder what your neuro means? > > Sharon > > > Re: stopping med?/ > > > I've been back on the Avonex for about 1.5 years. The first six > month's is HELL but I've adjusted and now I only have a reaction > like every third shot and it's nowhere near as bad as the first six > months. I kinda wanted to try something different this time but > both my neuro and the other neuro in town believe in Avonex. > Something about immunity problems with the others???? Don't really > understand the gobbldegook. > > But I take lots of supplements. ..b12, omega oils, mineral > supplements, cranberry, ginko, daily vit, and I even chew an extra > vit c tab every day. Many of my vitamins are in liquid form. I > really believe in the absorbtion issue. I, also, started the SWANK > diet and while haven't stuck to it religiously, I haven't eaten any > red meats in four months. Not sure if it's " fixed " my MS but I've > lost 28lbs (without excercise) and the whole " low-fat " thing has > controlled my irritable bowel syndrome. So...I do believe in > nutrition, supplements and the meds! > > Mindy > > > > > > > > > > > When did you stop all CRAB drugs? Just wondering > > > > if > > > > > it's been long enough for results to show on an > > > > MRI. > > > > > I felt so good when I stopped Avonex and it > > > > lasted > > > > > for a good while. But my symptoms have gotten > > > > so > > > > > much worse in the last year. I sure do regret my > > > > > decision to stop Avonex. I fear that I may have > > > > > wrecked my life by that decision. > > > > > > > > > > I sincerely hope you continue to do well, Akiba. > > > > > > > > > > Sharon > > > > > > > > > > > > > > > > > > > > > > " Insanity runs in my family. It practically > > > > gallops. " > > > > Cary Grant > > > > > > > > ____________ _________ _________ _________ _________ __ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 ROFL! The *subject* isn't funny, but I read this and thought "Clearly Rae doesn't know my Mother well at all yet (or her area)". LOL MY Mother, not independant?! It's like the sky turning green. LOL Absolutely MS has brought changes to her life and, yes, there are things which have changed or even been lost which are certainly not welcome. But no matter what has ever come to her life, my Mom adjusts, adapts, owns it and always her strength, strongwill and that fierce and stubborn independence come roaring through. LOL It aint always easy. Don't know how she does it. But she gets it figured out and she's one hell of a "role model". My Grandfather used to tell my Mother that she'd "argue with a fence post and slug it for not agreeing". ROFLMHO Yeah, MS may piss her off at times, make her cry others, but it sure won't steal those fine aspects from her. She'll let it know who Sharon's Boss is... and slug it if it doesn't agree. LOLOL Challis Rae & Doug Bower wrote: Just a quick comment, Sharon, about something you mentioned about having to wait to get someone to take you because you can't drive... Even if you aren't in a power wheelchair or scooter, mobility vans typically accept riders with canes or folks with walkers who need their services. It bothers me a little when I hear of folks who allow their disability to keep them homebound, withdrawing from friends or society. I sure don't... I suggest you call your city's bus company and see if they offer any transportation services for the disabled [i'll bet they do--it's actually required by law that they do!]. Ask them to mail you their user application form, which will no doubt contain a section that your neurologist (or GP) needs to sign, confirming that you need their service (just like the process of getting a state disabled pass); then there'll be a # you must call a day before you need a ride (usually by 4:30-5pm) to schedule a pick-up in your driveway for the next day, then return trip home later in the day. Subsidized state services like this are there to help people stay independent -- so if you need their services, don't be afraid to apply. You don't have to wait for family to be ready and miss an appointment, or possibly feel like a 'burden'. If you'd like to meet friends at the mall, church, dentist's, doctor's, movies, etc, (or even getting active at city council meetings like me), whatever you like to do... Get independent and book it! Cheers, Rae From: MSersLife [mailto:MSersLife ] On Behalf Of Sharon MarsdenSent: Monday, July 03, 2006 11:01 AMTo: MSersLife Subject: Re: Re: stopping med?/ Mindy That's interesting. I was under the impression that once a person stops Avonex their body creates antibodies so they can't take it again. Apparently that only happens in some cases since you are back on it. I did well on Avonex but I don't know what my neuro is going to suggest when I see him. When I saw him last he wanted me to "seriously consider Tysabri". I don't know when I'll get to see him though because I can't drive any longer and I have to wait for someone to take me. Now for my supplements: I take 6000 units of Pharmaceutical Grade Omega 3 Fish Oil every day. That's a lot but it makes me feel better. (and my good cholesterol is higher). I also take Bilberry (my neuro told me to take it to 'keep from going blind'), B Complex, Vitamin E, Glucosamine with MSM (I swear by this stuff!), Raspberry Leaf and Garlic Oil. How strictly are you following Swank? I'm curious about "immunity problems" with the other CRAB drugs. I wonder what your neuro means? Sharon Re: stopping med?/ I've been back on the Avonex for about 1.5 years. The first six month's is HELL but I've adjusted and now I only have a reaction like every third shot and it's nowhere near as bad as the first six months. I kinda wanted to try something different this time but both my neuro and the other neuro in town believe in Avonex. Something about immunity problems with the others???? Don't really understand the gobbldegook. But I take lots of supplements. ..b12, omega oils, mineral supplements, cranberry, ginko, daily vit, and I even chew an extra vit c tab every day. Many of my vitamins are in liquid form. I really believe in the absorbtion issue. I, also, started the SWANK diet and while haven't stuck to it religiously, I haven't eaten any red meats in four months. Not sure if it's "fixed" my MS but I've lost 28lbs (without excercise) and the whole "low-fat" thing has controlled my irritable bowel syndrome. So...I do believe in nutrition, supplements and the meds!Mindy> > > > > > > When did you stop all CRAB drugs? Just wondering> > > if> > > > it's been long enough for results to show on an> > > MRI.> > > > I felt so good when I stopped Avonex and it > > > lasted> > > > for a good while. But my symptoms have gotten > > > so> > > > much worse in the last year. I sure do regret my> > > > decision to stop Avonex. I fear that I may have> > > > wrecked my life by that decision.> > > > > > > > I sincerely hope you continue to do well, Akiba.> > > > > > > > Sharon> > > > > > > > > > > > > > > > > "Insanity runs in my family. It practically> > > gallops."> > > Cary Grant> > > > > > ____________ _________ _________ _________ _________ __> > > Quote Link to comment Share on other sites More sharing options...
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