October 10th, 2009
Oh I know, it’s been forever n’ ever. Typing is a pain and I’d rather plunk out a few letters on a Facebook comment or Twitter from my iPod Touch! But I did buy this laptop as not only a place to surf the web and talk on Skype, but to WRITE MORE so I best get on that, even if I am still slow as molasses on this here Frogpad. It’s sooooo easy to make mistakes on that thing I’m constantly backspacing (which I’ll also make mistakes doing and end up typing numbers or something instead) so it takes me forever to do anything. Although I guess I won’t get better on it if I don’t practice more often, right? So enough with the excuses and on with the entry.
Summer is over. And I didn’t blog about it at all! And I’m just not going to because the thought of going over every detail of my life for the past few months is one of the reasons I haven’t updated. So overwhelming! So I guess I’ll be missing a few months of my life from here. No biggie, since I’m pretty sure I didn’t do much. Popped in to a couple music festivals, saw some friends, got my power wheelchair, enjoyed some Indian food, got excited that they opened up a Tim Hortons in my mall (and had my fill of iced coffees), complained about my stupid hair and the fact that I am trapped in my apartment most of the time and getting tired of it. Yes, I do realize I have both a scooter and a power wheelchair and should be able to go out whenever I feel like it. Unfortunately it’s not working that way, as I need so much help now I can’t even explain it. I feel like I have lost all my independence and I get really sad when I think about it, so let’s move on, shall we? Or I won’t be able to see through the tears to type.
Speaking of crying, did y’all watch Jim and Pam’s wedding episode of The Office last week? Gaaaaah I bawled. Sorry if that’s a spoiler for those of you in other countries who are behind by a couple of years. Yes, Jim and Pam do get married. And it is awesome.
I did attend a pretty amazing lecture last week by a woman (a doctor, actually) with secondary progressive MS (like me) who was in a wheelchair most of the time (like me) and managed to reverse it and get back on her bike again (unlike me!) She did it by using an MNES machine (on high power for MANY hours/day) and a strict diet/supplements routine. Her name is Dr. Terry Wahls. Her website is HERE, you can find her lectures on You Tube I believe, and the one I attended last week will be up on the Direct-MS website within the next few weeks, from what I hear.
Yes, this gives me hope, but I also know it’s not as simple as just eating 6 cups of kale a day and hooking myself up to an NMES machine. Dr. Wahls is a medical doctor, and had access to a physiotheraist down the hall who could help her learn how to use the machine. You can’t just buy one and start using it, it’s a little more intense than a TENS machine. So right now my focus is to find a physiotherapist willing to help me before I invest in the machine. I have an appointment with one on the 19th. Unfortunately, those machines have not been approved for MS, (although I don’t know WHY, hello?
“NMES can be used for a variety of reasons including increasing blood circulations to the muscle, relaxing muscle spasms, prevention of muscle atrophy in patients unable to use parts of their body, prevention of venous thrombosis after surgery, and increasing range of motion.”
Does that not sound like me, HELLO?) because MS is not a muscle disease and NMES does not fix the nerve signal from the brain to reach the muscle and tell it to move. But, but but BUT, I truly believe that if my muscles get stronger I will be able to move them more, and REPAIR that signal through the process of movement. Unfortunately for me and others who believe this, the doctors in the MS system don’t believe we can get better and “the system isn’t set up for you to improve” (direct quote from the physiatrist I saw on Tuesday). it’s set up to rehabilitate someone with a deficiency they believe can be fixed (i.e. if you are in a car accident and unable to walk without intensive rehab, stuff like that), but those of us with progressive MS are left on our own if we want to IMPROVE. We get Range of Motion stretching (like I get from Home Care 4 times/week) for the purpose of maintaining, but nothing to strengthen. This is the same physiotrist who referred me for physio because he believed a lot of my disability the past few years was due to being laid up after breaking my wrist, bad surgery experiences, depression, weight gain, etc. and not just MS, so there was hope I could IMPROVE, and now he’s saying I’m on my own again. I complained to him that all that physio I was supposed to get turned into once/week or every two weeks, and I need to be using that Nu-Step machine several times/week if I want to get stronger. That’s when he told me the system isn’t set up for that. So… I’m on my own again. Sigh.
So, I have that appointment on the 19th and the hope is that I will start their exercise program twice/week, the catch being they will need to get a walker for me to use at the facility as I won’t be able to bring mine, and I’ll need to book a Home Care worker to meet me there as a companion/helper/limb lifter. Also, fingers crossed the P/T will be willing to assist me in my NMES desires. There is also an exercise class for people with disabilities at the University that I will look into. It’s costly and I don’t know if it’s suitable, but hopefully they’ll let me check it out as an observer before I pay any money. And I STILL haven’t been to a pool and fear I won’t until I can hire my own one-on-one caregiver, whenever the hell THAT will happen.
I did not intend for this entry to turn into a long rant about… whatever this is about. Now I’m too tired to write about anything else! Oh - for those wondering - I am still taking StemEnhance. For about five minutes I thought it was doing something when my right eye stopped moving around in all sorts of weird directions and I got all excited, but no improvements since then. I do think it helped my eye, though, and I am not giving up all hope that I may see something else improve in the future. I always try to stay hopeful, but MAN life would be easier if I weighed 110 pounds and had lots of $$. I’ve been back on Weight Watchers for 3 months and have only lost 13 pounds (and don’t try to tell me 13 pounds is a lot, at my size I should have lost that the first 2-3 weeks). You know WHY? Because I’m not eating ENOUGH. It’s so hard for me to get myself food that I don’t do it often enough. Crikey. I’ve got to make some serious calls for help next week. Just reading this over I can see how pathetic it all is!