Category: MS

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MS

Virtual reality

Had a dream that I was late for my monthly infusion by 3 hours. The clinic was actually closing and my nurse was totally wiped out. As I was trying to figure out what to do, I noticed she had fallen asleep in one of the chairs. Seemed like a good idea, so I dozed off too.

Then I woke up. Slowly, I realized I didn’t know where I was. My brother, father, and my stepmother were there and they were treating me as if I had come out of a coma or something. That was worrying but it did go a ways towards explaining why I didn’t recognize where I was.

As they showed me around I was amazed at the sheer size of the place. It was palatial. It probably had 40 or 50 rooms, crazy big place. The view was stunning too. We were high up on a cliff overlooking a rocky view of the ocean crashing against the rocks. “Where am I?” This is our house in Nova Scotia is what I was told. “But how could you afford a place like this, did you win the lottery or something?” That’s when my stepmother gave me an exasperated look and said, “Isaac, you’re sleepwalking.”

Of course! I had heard that Ambien can make people start sleepwalking. My cousins and uncle used to do it and I always wondered what it was like. Me sleepwalking explained everything and was plausible, I was actually pleased that I had finally done it.

My stepmother led me back to my room so I could go back to sleep. She was having trouble with the door, then I woke up.

At least I think I did. Now I’m typing this blog post while getting my infusion. It looks like it was just a regular dream, not sleepwalking but man, what a dream! Ambien is also known for giving you vivid dreams. This was the most lifelike, the most convincing dream I had ever had. I can do without the nested dreaming/waking thing though. I’m not the best thinker when I wake up anyway, making me wonder if I’m actually awake might make me a little paranoid after a while.

Not sure if having those kinds of dreams are a good or bad thing. I guess having them is good as it means I’m sleeping. I’ll go with that.

Categories
MS

Surprise in PT today

Went to PT for the first time in two weeks and had a bit of a surprise. She tested my hip strength and they tested out as normal. We’ve been working on those for the past 5 months and the improvement seemed to come once I stopped doing PT for a bit. Hmmm.

My therapist told me that there wasn’t really anything left we could do in hour long sessions. So that’s pretty much it, I won’t be going back if all goes well.

That’s not to say everything’s good unfortunately. I need to work only stamina. Right now I can stand up for 20 minutes, maybe 30 before getting run down. That’s better than I was 5 months ago, but it’s a long ways from doing an 8 hour day.

So no more PT for the time being. I’m going to start trying to stand around and walk more. Hopefully I’ll be back at work in the near future.

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medical MS

Another month

It’s official, I’ll be doing at least another month of physical therapy. I finally feel some muscles where I didn’t have any before, but my stamina just isn’t there. Certainly not enough for a whole day’s worth. It could be worse really. I am seeing some improvement, now we just need to speed that up.

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MS

One week in

I’ve been out of work for a week now. It has helped in a lot of ways. Mentally, I feel much better. The absence of constant stress of getting worn down at work has allowed me to start thinking clearly again. 

I’ve only gone to two PT sessions so far but I can already tell this is going to be good. Still haven’t been able to get an actual cardio workout, my muscles just aren’t up to it. I can see the possibility though. Still not sure if 6 weeks is going to be enough but I’m willing to imagine that it could be. The real test will come on thursday. That will be the first time I will go in with only one days rest. If I can do that then I can go to three times a week and I’ll be much more likely to be able to get where I need to go in the 6 weeks. Wish me luck!

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medical MS

6 weeks with no work

No, I’m not on vacation… I’ve gone onto short term disability to do another round of physical therapy. I need to build up my strength again. I tried working and doing physical therapy at the same time last time. Didn’t work out so well. The PT wore me out so it was difficult to work. But because I was so tired on the days I didn’t go to PT, I didn’t do a lot of the exercises I was supposed to at home. I still think I got some benefits out of it but it wasn’t as much as I had hoped.

Had my first session yesterday and my gut feeling was confirmed, I need to work on my lower body. Did just a few things and I was wiped out. Was wiped out today too. Honestly, not being expected at work is a great relief to me. I had been steeling my resolve every morning for so long and I got ground down. It’s tough to mentally pump yourself up every day. Having this time away from work will allow me to get stronger and hopefully recharge me mentally.

I’m also going to use the time to get some other appointments out of the way too. I need new glasses, I need a physical, I need a haircut, etc. I have been so tired that I have mostly just hung around the house on my days off. Now I can try to catch up! 

I’m also going to try writing some more on this blog, I’ve gotten out of the habit and I miss it…

Categories
culture MS

Raising awareness

The “Kony” video has been circulating around. I haven’t watched it, the brief intro turned me off. It said something to the effect that the video wasn’t suggesting a solution, but simply raising awareness of the man and the awful things he has done. I don’t doubt for a second that he is truly awful, but I really don’t trust any activity or organization that is about “raising awareness.”

Predictably, actual Ugandans aren’t so thrilled with the video. Apparently, there wasn’t a single instance of talking to people involved in the terrible things that the 20 minute video is about. Kony isn’t even in Uganda any more. There’s a fair amount of backlash. Why? I have always had a difficult time putting into words why I disliked the publicity thing, but I think I can now.

Several months after I got my job, I was spreading the news that I had MS. I was telling it one guy and he informed me that he takes part in a annual MS ride. Now he’s a really nice guy, and he really wants to do well, so the only thing I could say to him was, “Funny, I don’t do that ride…” My gut reaction was to ask him if I should thank him for riding his bike. Yes, that is incredibly cynical. I’m sure the ride made him feel good. I’m also sure those Ugandans probably figured all those white people in California felt good about making that slick 20 minute, high def video about problems in Uganda.

Yes, I’m sure the MS ride drums up money for MS research, but just like the video, I wonder if it is awareness of MS that is being raised or awareness of the National MS whatever that is putting on the event. The same complaint is being leveled against the Kony video. Detractors claim that the video did a great job of raising awareness of the NGO that made the video, but did very little about the actual problems, let alone admit that things were quite a bit more complicated than there being one bad guy.

If you are going to market problems, don’t be surprised when the people that actually suffer those problems question you. All of the effort put into raising awareness, that couldn’t have been put to more productive uses? Maybe it can, maybe. But the fact that you would rather take the chance instead of spending the resources on something concrete says something.

Categories
MS odds and ends

41!

I’ll be turning 41 tomorrow. My 40th year was really a bit of a blur. MS clouded my thoughts and made really lethargic for long periods of time but i think I’ve got it mostly under control now. My doctor explained MS like this, there are two ongoing issues with the disease, damage to the nerves, and the inflammation that causes that damage.

Right now there isn’t a whole lot that can be done about the nerve damage, but the inflammation is a good target for improvement. I stumbled across Gary Taubes’s writing about weight gain. His ideas that insulin, caused by carbs in the diet, is the main factor is weight gain seem to make a lot of sense, and it certainly has led to me losing some weight. What I was surprised about was how much clearer my thinking was and how much better my balance was. That didn’t make a lot of sense to me, but I liked it.

In my usual poring over the internet, I think I stumbled across the reason for that. It turns out that carb rich foods spur on different types of inflammation. I don’t know the mechanism, but it certainly seems to fit my experience.

I have also come across a new supplement that I think is really helping me. It’s called Anatabloc and it is supposed to be a miracle anti-inflammatory substance. There have been some great studies done on various conditions and it seems to really help. This stuff is really expensive as far as supplements go, but in my short time using it, I feel like its worth it. This is the very definition of a small sample size, but in my two days at work with it, I have felt almost normal. In addition, I have not had any leg cramps at night either. I’m going to keep using this for a couple of months and see how it goes. Think I’ll give it a test and try a favorite meal that is guaranteed to make me feel blah, Chic-Fil-A. One of their sandwiches and fries will usually make me swim my and dizzy, we’ll see if this supplement has a mitigating effect.

I can do that because I have the next 7 days off! I’ll be going down to see the folks and see a friend or two, should be fun.

Categories
MS

Physical Therepy

I’ve been going to physical therapy for a couple of weeks now. I already feel stronger. I don’t have the worrying weakness going down the stairs, and I can balance much better with my eyes open. Eyes closed is still a bit of an adventure. I’ve been doing an exercise where I walk heel to toe in a straight line. I feel like I’m on a tightrope even though I’m just walking across the floor. Lots of balance checks and arm waving to keep on the line. I tried doing it with my eyes closed for the first time the other day. Woosh. I used a couple of poles like I was cross country skiing to keep my balance. Usually my legs are really tired at the end of these sessions, the use of the poles made my arms and shoulders tired. Still, it was good to do, I’m sure I’ll get better as I do it more often.

The most important thing I’ve learned so far is that I can’t exercise like a normal person. If I were training for sprints or something, I would need to push myself and wear myself out during the workout. I’ve been told by my therapist that that kind of workout is detrimental for someone with MS. If I exhaust myself, it will take much longer to recover, and I will feel worse than when I started. That certainly jibes with my experience. We are taking it much more slowly than I would have anticipated, but I think it’s paying dividends. I’m doing horizontal squats at a much lower weight than I had been doing them before. We keep building up the number of reps and the number of sets, but it is done in such a way that I’m not getting exhausted.

The bad thing is that I am now super paranoid about how much effort I’m expending. I now realize that when I leave work exhausted, I am really doing myself no favors and setting myself up to feel rotten for longer periods of time. I’ve missed a fair about of work these past couple of weeks because I’m afraid of going to work tired and then wearing myself out walking around for the rest of the day. I’m going to have to make a concerted effort to sit down at work, that’s all, no more giving up every ounce of energy. Like I said, I do feel stronger already and I think if I keep up a good mix of proper exercise and good rest, things will be much better long term. Wish me luck!

Categories
medical MS

wow

Had my first physical therapy session yesterday. It was mostly an initial screening, seeing where I was and what I wanted to do etc. The physical therapist was happy with my general strength and flexibility. I kept trying to tell her that most of my problems don’t show up until I’ve been on my feet for a while, but she reassured me that most of her patients come in much worse. I had gone in worried about my strength and balance, in that order. My function strength seemed OK, but my balance was actually worse than I thought.

I did a simple test, stand on one foot for 30 seconds. It was tough on my right foot, and my left was noticeably worse. Doing with my eyes closed was hopeless, I was going over in under 5 seconds. She assigned a list of 5 exercises to do. We would concentrate on balance first and then work our way into the strength part. She thought I’d be able to do the first three with little problem, but that the last two would be challenging. I went home and then started my exercises a few hours later. Wow. Standing on one foot was still challenging to me, but rowing 2 sets of 30 seconds on each foot was really difficult, it really took it out of me. And that was the first exercise! The second one involved standing on one foot while moving the other leg. I couldn’t even do two sets of that.

I called it quits for the night. I figured that between the exercises at the office and the food shopping I had done, my legs were too tired. This morning was a classic example of struggling to wake from a coma. I was in bed for what seemed like forever, still dreaming but knowing that I had to get up. It took an unbelievable amount of willpower to actually get up. There was no way I was going to get to work on time, so I called them up, ate, and then did my exercises. I think my initial suspicion was true about being tired the day before because this time I was able to do both sets of both exercises. It was still difficult, but I could do them. I was tired though. Had to rest afterwards. I tried going to work, but that didn’t work out so well. I knew I was in trouble when the walk from the car to the store totally wiped me out. My legs were rubber, and my glutes, calves, and hamstrings were all aching. I turned right around and went back home. As bad as I felt, standing on my legs for another 7 hours was not going to do me any favors.

So I’m guessing my currently prescribes exercises are both strength and balance ones. I have so little strength in my legs that even standing on one foot for 30 seconds at a time is a good workout. No wonder I felt so awful when I did 20 minutes on the exercise bike! I have my first real session tomorrow, I’m sure I’ll be really tired at the end of it. I’ve already warned work that if I feel like I do today on thursday, I won’t come in. Still, this is a different type of exhaustion, this is a physical exertion one, so I’m hopeful that even a few sessions like this and I’ll be noticeably better. Wish me luck!

Categories
medical MS

Saw the doc

When I went to the doc last, I wasn’t really having one of my good days, and it sounds like that clouded my perception of what happened and the advice I was given. They still haven’t gotten back the results of the JC virus antibodies test, but regardless of what it comes back as, I will continue to take tysabri. My doc explained that he doesn’t consider me to be a high risk patient for PML since I have never had any other MS drugs or anything else that could mess up my immune system. He also came as close as I think he could to saying that it would be a really bad idea to stop this particular treatment because of the outlook otherwise.

That’s a relief really. This drug has a really good record of reducing new lesions and slowing the progression of the disease. As a bonus, the side effect I have been getting from it has been me feeling better for the couple weeks after. There are now other, oral, treatments on the market now that seem to have the same effectiveness against MS, but also have more common nasty side effects like heart problems, etc. There are also some drugs that need to be injected either every other day or once a week that don’t work as well, and they have the predictable side effect of making you feel like you have the flu…

So, like I said, I’m glad I’ll be staying on this. They’ll keep monitoring me for signs of PML, but it’s still a rather rare thing. 200 people out of 50,000 have gotten it, and a significant number of them had immune suppressing treatments too. I like my chances…

I’m also going to start going to physical therapy. Not really sure what’s involved with that, but I think it’s a good idea. My muscle mass has gone down considerably in general, and in my legs especially. Thought it would be a good idea to get an actual workout plan targeting what I’ve got going on instead of me just killing myself on the bike or something. I don’t know what impact this will have with work, but it’s something I’ll have to work out.

So that’s the news, mostly more of the same, and that’s a good thing as far as I’m concerned.