Can You Hear Me Now?

Okay, so, if you have MS or know someone close to you with MS, you have (maybe just recently, like me) heard about The Liberation Treatment and Dr. Zamboni. I heard about it for the first time on Friday when AH called me excitedly after hearing about it on the radio. Then there was that special on W5. I’m not going to go into great details about it here, you can click the links and see for yourself, but I AM going to urge you to call your closest MS Society chapter and neurologists and ask questions. Make a fuss. This is an amazing discovery which requires attention. Pharmaceutical companies and many organizations stand to lose a LOT of money over this, and it’s totally outside of the box of all other MS theories, so it’s going to take people like us to make noise. On Friday the MS Society wanted no part in this theory but after pressure from the phone calls on Monday after the news report aired, they changed their tune and have decided to grant funds for research. We must keep up the momentum!

I had a nice weekend. On Saturday my mom and Bob came by for their last visit before leaving on their vacation to Mexico tomorrow! My brother’s girlfriend also came by, and she helped me get to the mall so I could pick up a few things, including the shower curtain and handheld shower head for my neighbour. We weren’t able to get it over to her that day, but the rings were put in the curtain so it was ready for hanging. Cindy came by again the other day, and told me Home Care had come by to assess her and she was getting a bathtub bench, raised toilet seat, bars in the tub, pole beside her bed, a NEW wheelchair, and personal care assistance for showers and dressing. Awesome.

That night my dad picked me up and we went to my friend/client/Coach K’s 50th birthday bash. Lucky for me it was held at a restaurant and not his house so I could actually go! (His house has lots of stairs). I could only stay for a couple of hours (bedtime for me these days is between 9 and 10:00) but it was so good to see him and a few other friends of his I know. Coach K is, last I heard, 6′9″ (I’m pretty sure he was 6′6″ when I met him 10 years ago, but after 6′4″ everyone is shorter than you, so who’s gonna argue?) He just competed in and came in 5th at a national body building championship (so yeah, no one is going to argue with him about ANYTHING, except me, ’cause I’m his bookkeeper and make him pay his taxes no matter how much he whines). When he emailed me the photo of him posing on stage in a Speedo, I think I screamed, before I gave him shit. He’s like a brother to me… and no one wants to see their buffed, tanned brother in a Speedo.

On Sunday, my good friend and hero Rob Szabo came by with Ryan Hennessey, whom he is touring with right now. They had a show here that night but since getting out isn’t easy for me and bathrooms at these live music venues are rarely accessible (not to mention the bed time thing) I wasn’t able to go, so it was super appreciated that they made time for me. AND we went over to Cindy’s where they installed the stuff for her shower! I love me some Handymen. Slash musicians, the perfect blend. Cindy is not one to show emotion but I know she was grateful and thanked us. Good Karma Points earned by all. I had never met Ryan before, and he is a super great guy. Of course. Rob surrounds himself with pretty awesome people. He produced Ryan’s CD and gave me a copy… he also produced PETER KATZ’S UPCOMING CD THAT GLEN HANSARD SINGS ON . Not sure If I mentioned that before.

My 101 List is rolling along. I’ve been following the Core Balance diet (”food plan” - not a fan of the word DIET) for the past week, which among other things means no sugar (except in natural forms like fruits, grains). I’m doing good, although my craving for chocolate is starting to hit. Today is my first day of liquids only (one day a week over 6 weeks - not a Core Balance thing, just something I want to do). The other day I was walking up the hall and my pants fell off me, right down to my ankles. It was then I realized all the pants I wear I was wearing around the time of my 40th birthday a year and a half ago, and I have actually lost 50 pounds since then. It’s time to dig through my closet and find more pants. I would say it’s time to “buy new pants”, but I have certainly been this weight before in recent years (and lower… I gained a LOT of weight since breaking my wrist) so I’m pretty sure I’ve got better fitting pants around. But I sure do love my Silhouettes Yoga Pants so I think a trip to eBay is in order as well.

The pool is helping the weight loss too, I’m sure. Even though it’s only twice/week and I’m not doing much in there, I have worked up to 10 minutes and am even able to move my arm and leg a bit, to sorta jog in place or make scissor movements with my legs. It’s getting there! I’m still DEAD when I get out and can’t lift my right foot… and it takes a good 24 hours to recover… but I know it will get better. The staff have all said they can see a big difference from my first day, so that’s encouraging!

I need to clean off my memory card to get to all my cat pics. In the meantime though, I’m just glad to be updating! Pictures soon.

I need to VENT, oh my God.

Remember in the past I mentioned I had a neighbour with MS named Richard, who moved out because he didn’t feel safe? No? Well, I did. And in his place moved in a lady I will call “Cindy”. Cindy is in a wheelchair, and I see her out my window almost every day wheeling herself to UnNamed Department Store where she works. I have learned through our brief encounters in the hallway or at the mall that she has cerebral palsy and a boyfriend named Nathan. Every time I see her on that wheelchair pushing herself to work I think “man, that woman has so much courage” and “she needs a power chair”. I mentioned that to her one day, and she told me she was applying for a power chair through Easter Seals. She just needed “one more name” to put down as a contact. This was my first hint that she doesn’t have a lot of support in her life, and of course I gave her my name and number to put down as a contact.

I asked her if she got any home care. She said no. I asked her if she had a proper walker (she can walk a tiny bit, and you can’t be 100% wheelchair bound in these apartments anyway because of the kitchens and bathrooms sizes, so I knew she must use a walker). She said she has a crappy one that breaks when she puts a lot of weight on it. She has no feeling in her legs and feet from the knees down, so it’s safe to say she needs to put weight on it. I told her about home care and to get registered with them, but didn’t take it any further than that at the time.

Yesterday I bumped into Nathan as he was leaving Cindy’s apartment with a bag of garbage. “Just taking out the garbage. Cindy needs a lot of help”. I said “she really needs to look into getting home care!” He said “oh, she can’t afford that.” I gulped. “It’s FREE! I get someone every day!” He looked dumbfounded. So today, while I was going for my little walk up and down the hall with my home care worker, Cindy came out to check her mail. I asked her to please come over and see me if she had time, and since she didn’t start work until 3:00, she came right over.

After talking with her for awhile, I learned that she not only has CP, but suffered a stroke 5 years ago which resulted in a 3 month hospital stay and some permanent disability. Her father committed suicide 15 years ago. Her mother and brother are here, but it doesn’t sound like she sees them much. “They hate Nathan”. I asked about Nathan… how they met, how long they’d been together, and her responses made me ill. For starters, he won’t help her with anything unless she pays him. He’s skitzophrenic. They met about 10 years ago in a food court at a mall. Nathan was there with his girlfriend at the time, also in a wheelchair. He walked up to Cindy, told her she was beautiful, and that he’d like to buy her dinner (in the food court! In front of his girlfriend! SCORE!) Cindy asked “what about your girlfriend?” and he said “oh, she can just take a Handi-Bus home”. Seriously! I was all… “uh… Cindy? Would that not be a sign that he would not be a good boyfriend?” I think she knows, but feels kinda stuck. He takes her grocery shopping and stuff. (As long as he’s paid). I asked her if she ever felt unsafe with him? Oh, yes. She used to live with him but moved out because he was violent. At least she had the smarts/guts to do that, but she can’t seem to get rid of him completely. She relies on the little help he gives her (for pay).

I picked up the phone and called my Home Care nurse to get the main home care number for new registrants. I spent the next hour on the phone with various intake workers and nurses, giving them Cindy’s info. I learned (because I was going between asking Cindy questions and telling the nurse) that Cindy can’t get herself in and out of her bathtub, and can’t even take a shower (she has a bath bench for showering) because she can’t afford the shower curtain and hand held shower head she needs to take one. FUCK. Seriously? She can’t even afford a fucking shower curtain, yet dickhead takes her money? Guess what I’ll be buying for her next time I get to the mall. She struggles to clean and dress herself, which is all you need to apply for home care. They are sending out an occupational therapist next week to assess her. She should be able to get a decent walker, poles, railings in the tub and other equipment she may need to help her in her home. As well as someone to help with bathing and dressing on a regular basis. I also hope they help her get a power chair… she would sure use it more than I use mine. And I’m pretty sure Easter Seals won’t buy her one unless she has first been turned down by the government. And she hasn’t even gone that route yet.

But that’s a conversation for another day. I will help her write a Client Impact Statement for her application. I’m her self-proclaimed Advocate, now. I can’t make her break up with Nathan, but hopefully I have steered her in a direction that she may not need to rely on him as much and will tell him to leave on her own. Fingers crossed.

It’s November 15, and I did it! I finished my 101 list. And by finished, of course, I mean I finished compiling it. I have a long way to go to get ‘er done!

As mentioned in my last entry, I’m headed back to the pool. I have been going twice/week, and as much as I’d like to say it’s fabulous and everything is wonderful, it hasn’t been working out that way yet. I don’t know why I thought it would be just like old times. I know I use a wheelchair now, and I know I need assistance with every little thing, and I know stairs are not my friend, so I don’t know why I thought once I got to the pool it would be the same as it was 3-1/2years ago.

On the first day, we arrived at the pool and met my caregiver Lara who was there to help me in the change room. She’s great. We got me out to the pool, I headed straight for the stairs into the pool, grabbed the rail, and FROZE. I didn’t know what to do. Stairs? It was like I’d never seen them before. I waited for my dad and with his help we got me down the stairs slowwwwwwwly and into the water. At which point I started flailing aimlessly. I wasn’t able to walk in the water, stand in the water, tread water, move my right arm or leg AT ALL. I was in shock. What was going on? The staff saw me struggling and tossed a couple foam noodles my way which my dad wrapped around me. They didn’t help much, I was still expecting to do a little deep water workout moves and couldn’t understand why my body didn’t get it. What a difference a few years makes in the world of progressive MS. I think I flailed around for a total of 7 minutes before I was exhausted and knew I’d have to get out now if I expected to tackle those stairs up. It took THREE people to help me get up those (5? 6?) stairs, and I don’t know how long, to safely land back in my wheelchair.

It was rough and I came home feeling exhausted and completely defeated. And in utter shock! What a wake up call for my body to realize just what has happened to it! The second time I went, I knew what to expect so it wasn’t as shocking. Now I know to get a foam belt on me before I hit the water, and am able to do the stairs super slow with just my dad’s help. I still flail about in the water, but I try to do some leg movements and my dad will swing my arm around for me. I only stay in 8-10 minutes because the stairs and change room are difficult and tiring, too. I’m unable to lift my right foot at ALL by the time I get out to the car. I just have to believe, that in time, I will get better at it all.

I’m very grateful my dad is available to help me with this! It’s starting to feel exciting to be back in the water, not just terrifying. I can’t wait for the day I can do those stairs without such a struggle.

Another thing that should help me is that I’ve got a NMES machine on the way, should be here next week. We found one that looks pretty good for a great price. The kind I wanted costs $1,300, so, no. I hope the one I’m getting is just as good, for only $140. The specs are similar. Fingers crossed it works for me, and isn’t too complicated to use. I’m hoping using that every day will strengthen those muscles down my right side that don t get used.

I watched some of the Gemini Awards (Canada’s “Emmy”) which happened to take place here in Calgary last night. I just found out that Cory Monteith, who stars as Finn on “Glee., is from Calgary (he was there). I can’t believe I didn’t know that before! I love Glee. I do. I’m a bit of a Gleek. Even downloaded the soundtrack onto my iPod. Other new shows I’m into are Modern Family and Community. I love me some laughs.

Music Minute! My friend Peter Katz has a new CD coming out… soon, I’m not sure when exactly, but Glen Hansard sings on one of the tracks. Who is Glen Hansard, you ask? Why, none other than the lead singer of the Irish band The Frames and the guy who, along with Marketa Irglova, starred in Once and won the 2008 Academy Award for Best Original Song for “Falling Slowly” (and are now known as the duo The Swell Season). That’s all. I LOVE Glen Hansard and am soooooo thrilled for Peter that Glen is a fan of his work and agreed to be involved! Peter is headed for the big time. He’s so damn easy to love.

Also, my New Zealand buddy Phil Madsen released a new CD called Mr Yellow Tree that you can download on iTunes. I highly recommend checking it out! This is the guy I saw in a bar the night before I left New Zealand in 2001 (this time 8 years ago I was there! Wah!) and he (and his voice) left such an impact on me I still try to keep in touch with him and have been waiting for this CD ever since! He is one talented man.

Sweetie.

“Scratch mah belly”