Another lunch, more PT, and a Neuro appt.
I knew what I was going to write about, then dinner was served (penne w/ shrimp and veggies if you must know), and I completely forgot. So, then.
It might have been about the record breaking day (heat, that is) that I slept through. I guess it got up to 68 degrees at SeaTac, and it was mostly sunny. I think it would have been a good day for a walk down at Chambers Bay. While I'm at it, I'll admit to sleeping through the equally nice Saturday we had last weekend, all due to my stupid nocturnal habits.
I did manage to get up and over to Chili Thai by Noon yesterday to have lunch with the girls. This is the second time I've eaten there and not been happy with the food. If I end up there again, I'll opt for a curry. Since they seem to go heavy on the sauces, I should be safe with a soupy entree.
In other news, I have been doing my Roll for Control exercises, if nothing else. Go ahead, shame me. I hate exercising, and, after all, that is what PT is -- exercising specific muscle groups. It is not training me to run a marathon, it is training me to maintain my ability to walk at all. Which is important because this house is too small for a wheelchair. If, or shall I say when, I need a wheelchair, the only thing I fear is the lack of accessibility in this house. This house, which my parent's bought for me, and which I now own outright, and which, without MAJOR renovation cannot be made w/c friendly, and so will have to be sold. AND in this market and with inflation, I wouldn't be able to find something comparable that is a little more roomy in its layout. DH is pretty handy, but he doesn't have the same attitude to "plan for the worst, hope for the best." Oh, no. He is a "We'll deal with it when and if that happens" kind of stick-your-head-in-the-sand kind of guy. He doesn't know MS as I know MS. Remember, I've been there, in the beginning. Three years living some of the worst that MS can toss one's way. But I was single, and in my 20's back then. I suspect that secondary progressive MS won't just up and let me get better in the same way that happened before. I think I am being clear headed with this attitude, and not a negative thinker.
Anyway, tonight I promised myself I'd go to bed by 4 AM, so I can get up around Noon-30 and take a shower before heading off to PT. I'm going to to ask her about adding some weight to the things I do, and see if I notice more progress that way. Even if it sets me back for the next day, it might be worth it. And though I am not ready to give it a try, she did show me this neat thing they have: an underwater treadmill! And I got to see how it works. Two weeks ago, her client after me was a woman who was nearly eight months pregnant, and who was having a BIG, maybe 9# baby! Anyway, part of her prenatal exercises is to walk, and doing it underwater makes her belly feel weightless! So, the theory goes, water walking is good for MS as it strengthens the muscles used for walking because of added resistance. Anyway, I'm not ready to try it yet - but maybe I'll get over my modesty, and whatever else is in the way (self-talk wise) and do it someday.
The three machines I used on Monday were the NuStep, the quad press, and the thing that you use where you roll your arms in front of you. I did the quad press last, and after the NuStep I was so tired there was no danger of hyper-extending my knees. It felt like 50# had been added, but of course it was the same settings as the last time. MS fatigue had set in. But it didn't last long.
Oh yeah, I also saw my neuro last week and he prescribed Ritalin, for fatigue issues. Did you know there is a black market for Ritalin? It's a controlled substance. A pharmacist cannot call his office for refills, and so I will have to call ahead and go by his office to pick up a new Rx every month if I stay with it. Now this seems like something I would have appreciated when I was still able to walk! Now, perhaps not so much, as I am not really narcoleptic. But I can use it on an 'as needed' basis, so there's that. And he prescribed the new Ampyra. The pharmacist had to look it up on the computer. Turns out that your doc must get an enrollment form, complete it with the patient and then fax it to AMPYRA Patient Support Services, who then confirms the patient's insurance and eligibility for co-pay mitigation and forwards the prescription to a specialty pharmacy. Then someone from the pharmacy contacts the patient to arrange for delivery and will contact the patient for future refills. Frankly, the whole system with this drug stinks. Actually, everything about Ampyra stinks, except that it might help me walk 25% faster, or better, and that is good. Let's hope I fall into the 40% for whom it actually works! [And for this, they want $1056/month wholesale. Bastards!]
Good Night, TTYL, and Be Well,
It might have been about the record breaking day (heat, that is) that I slept through. I guess it got up to 68 degrees at SeaTac, and it was mostly sunny. I think it would have been a good day for a walk down at Chambers Bay. While I'm at it, I'll admit to sleeping through the equally nice Saturday we had last weekend, all due to my stupid nocturnal habits.
I did manage to get up and over to Chili Thai by Noon yesterday to have lunch with the girls. This is the second time I've eaten there and not been happy with the food. If I end up there again, I'll opt for a curry. Since they seem to go heavy on the sauces, I should be safe with a soupy entree.
In other news, I have been doing my Roll for Control exercises, if nothing else. Go ahead, shame me. I hate exercising, and, after all, that is what PT is -- exercising specific muscle groups. It is not training me to run a marathon, it is training me to maintain my ability to walk at all. Which is important because this house is too small for a wheelchair. If, or shall I say when, I need a wheelchair, the only thing I fear is the lack of accessibility in this house. This house, which my parent's bought for me, and which I now own outright, and which, without MAJOR renovation cannot be made w/c friendly, and so will have to be sold. AND in this market and with inflation, I wouldn't be able to find something comparable that is a little more roomy in its layout. DH is pretty handy, but he doesn't have the same attitude to "plan for the worst, hope for the best." Oh, no. He is a "We'll deal with it when and if that happens" kind of stick-your-head-in-the-sand kind of guy. He doesn't know MS as I know MS. Remember, I've been there, in the beginning. Three years living some of the worst that MS can toss one's way. But I was single, and in my 20's back then. I suspect that secondary progressive MS won't just up and let me get better in the same way that happened before. I think I am being clear headed with this attitude, and not a negative thinker.
Anyway, tonight I promised myself I'd go to bed by 4 AM, so I can get up around Noon-30 and take a shower before heading off to PT. I'm going to to ask her about adding some weight to the things I do, and see if I notice more progress that way. Even if it sets me back for the next day, it might be worth it. And though I am not ready to give it a try, she did show me this neat thing they have: an underwater treadmill! And I got to see how it works. Two weeks ago, her client after me was a woman who was nearly eight months pregnant, and who was having a BIG, maybe 9# baby! Anyway, part of her prenatal exercises is to walk, and doing it underwater makes her belly feel weightless! So, the theory goes, water walking is good for MS as it strengthens the muscles used for walking because of added resistance. Anyway, I'm not ready to try it yet - but maybe I'll get over my modesty, and whatever else is in the way (self-talk wise) and do it someday.
The three machines I used on Monday were the NuStep, the quad press, and the thing that you use where you roll your arms in front of you. I did the quad press last, and after the NuStep I was so tired there was no danger of hyper-extending my knees. It felt like 50# had been added, but of course it was the same settings as the last time. MS fatigue had set in. But it didn't last long.
Oh yeah, I also saw my neuro last week and he prescribed Ritalin, for fatigue issues. Did you know there is a black market for Ritalin? It's a controlled substance. A pharmacist cannot call his office for refills, and so I will have to call ahead and go by his office to pick up a new Rx every month if I stay with it. Now this seems like something I would have appreciated when I was still able to walk! Now, perhaps not so much, as I am not really narcoleptic. But I can use it on an 'as needed' basis, so there's that. And he prescribed the new Ampyra. The pharmacist had to look it up on the computer. Turns out that your doc must get an enrollment form, complete it with the patient and then fax it to AMPYRA Patient Support Services, who then confirms the patient's insurance and eligibility for co-pay mitigation and forwards the prescription to a specialty pharmacy. Then someone from the pharmacy contacts the patient to arrange for delivery and will contact the patient for future refills. Frankly, the whole system with this drug stinks. Actually, everything about Ampyra stinks, except that it might help me walk 25% faster, or better, and that is good. Let's hope I fall into the 40% for whom it actually works! [And for this, they want $1056/month wholesale. Bastards!]
Good Night, TTYL, and Be Well,
Hi Webster,
ReplyDeleteThose drug companies really have folks over a barrel ... it's so frustrating. I'm sorry to hear you go to bed at 4:00 a.m. ... no wonder you sleep through some days.
Best,
Marty
You are so right, you DO NOT want to go spms. It sux big time. You will be fine just keeping up what you are doing. I think you will never regret this time so spent. I face east, so I was up at 7am sitting in sun while it was still cool. This weather...
ReplyDeleteYep drugs cost way too much.
ReplyDeleteExercise is good
SPMS does suck
and sounds like the the food at Chili Thai is not so great either
Jan
I don't know if it cost too much because so much R&D goes on. Too many drugs fail to make it. And too many people get free Copaxone *me, me, me* for a long time until they get on Medicaid or what-not.
ReplyDeleteMy family had a retail business for 25+ years so I know how the dollars add up and it was sooooo frustrating to hear "Wal-Mart is cheaper." We were not Wal-Mart.
Hope it helps with your walking!