Tuesday, May 13, 2014

MISSING IN ACTION… BUT NOT GONE!



Well it’s been a long time since I’ve posted a blog, but it’s also been a long time since I’ve been up to it. In the last year since I’ve returned from India I have suffered three attacks and had to take high dose prednisone each time. Since I’ve been back from my stem cell treatments my MS symptoms and disabilities have never been worse! It all started with my first attack that I believe began while I was still in India. I’ve already related my story of how Doug Broeska and the CCSVI clinic refused to acknowledge the fact that I experienced an exacerbation and found it easier to just drop me from their study. Doug and the clinic still make the claim that no one has ever had a relapse since having their treatment. Perhaps if they did follow all of the patients and gave truthful outcomes they would be reporting very different results. Not that it really matters because results are not being reported and their so-called study is bogus, but this goes way too deep for the subject matter of this blog. Rest assured I will delve into this topic in the near future, for now I just want to stick with what’s been happening to me.
So it’s just past the one-year mark since my treatments in India and as stated my condition has never been worse. The past year has been very difficult on me, both emotionally and physically. Having suffered three attacks has definitely taken its toll, I haven’t even been able to walk around my house since October, when I had my second attack. Fortunately I had a small scooter donated in the fall that would allow us to pack it up in the trunk of our car for shorter day trips without hauling out my big scooter and driving the van. The fortunate part of this donation is that the scooter came just in time to allow me to get around my house. You see, it was after my second attack that my walking ability pretty much disappeared. It even got to the point that I couldn’t get up or down four stairs, mostly due to the spasticity in my legs. It’s taken literally, over half an hour to get up my four rise staircase into my house and that’s with the help of Lorelei. My legs get so stiff that it’s almost impossible to bend them at the knees. Lorelei has actually hurt herself on several occasions trying to force my knees to bend. So without even being able to navigate four stairs without help I was extremely isolated all winter. Given how long winter lasted with the extreme cold temperatures and vast amounts of snow I wouldn’t have been able to do much anyway. As each of these attacks progressed I lost my ability to drive each time. I was eventually able to recover enough to regain my driving ability, but only until the next time my legs were taken out again. My last attack occurred in the middle of March, and I have not been able to drive since. Things do get better if I’m not tired, problem is I always feel tired. I am confident that I will be back driving relatively soon as I am seeing some recovery in my legs. At least now that the snow is gone I can get outside on my scooter and get around on my own, not very far mind you, but at least I’m out of the house. There have been times throughout the last year that I’ve been housebound for literally weeks at a time. Thanks to the generosity and awesome work done by Easter Seals organization, I now have the freedom to get out of my house anytime I want because of the wheelchair lift they installed in my garage. It’s truly amazing to have the gift of mobility again.
Not that my difficulties end there, I have been robbed of so much more! I truly feel useless around the house these days. I used to be able to offer some help, do some grocery shopping, some cleaning and laundry, some cooking and various other tasks that I could take off of Lorelei’s plate. These days I can’t stand at the counter for any more than 15 minutes at a time, it’s very difficult to cook from a seated position, and I’m extremely clumsy and typically just get in the way when I’m in the kitchen. It’s been very difficult to deal with these changes, they seemed to have come up on us quite fast, leaving us unprepared to deal with situations that are now so difficult to cope with. Things that even I took for granted just a few short months ago have become so onerous that I’m challenged to even attempt them. Something as simple as taking a shower is now extremely difficult for me and in some cases quite dangerous. I have to step up about 6 inches to get into the shower and most of the time my feet are not able to make even that tiny climb. So I am now in the middle of applying for funding from the Alberta government for bathroom renovations to make things wheelchair accessible. As you can imagine bathroom renovations are not inexpensive, and the government grant of $7500 won’t go very far. I will be using an old friend as my general contractor which will allow us to do a lot of the work ourselves, sweat equity if you will, it just won’t be my sweat. With the help of friends to do the demolition work and some trades people that I know we should be able to come pretty close to making that budget. This renovation, however, can’t come too soon because taking a shower these days is hellish! The tops of my feet are all scratched and bruised from dragging them over the shower door threshold. Since I can’t lift my feet off the ground I have to grab onto my leg behind my knee in order to move my foot or leg, but this has now created additional problems for me. The constant lifting action, especially getting in and out of vehicles has created a lot of strain on my arm muscles in particular around my elbows. I now have to do physiotherapy just to deal with the pain of moving my arms!  Getting dressed and undressed has also now become very hard at least for my lower body. Lifting my feet and legs off the ground in order to get on shorts, pants or socks also creates great strain on my arms. Sitting on the edge of my bed I have to reach down with my left hand and grab onto my left ankle, then I have pull it up and hold it up while my right hand then tries to feed my left foot into my pant leg. Next I just reverse the sequence and get my right foot into the other pant leg. Once I’ve accomplished this feat I now have to pull my pants up, which means I have to stand leaning against the bed with my legs which is also very difficult considering I have absolutely no balance. It is such a tiring ordeal to shower and get dressed that at times I have to lay back down for at least a half an hour to recover. I actually find myself going commando at times just to avoid having to repeat the whole process to put on both underwear and pants.
It seems everything I do these days comes with extreme difficulty, it’s very frustrating and depressing. I can’t believe how much I’ve lost in the last year! I suppose the extreme isolation that I have dealt with is a contributing factor but it’s hard to just sit back remembering all the things I used to be able to do and not feel disheartened. It’s actually more than that, looking back and evaluating what’s happened in the last year is more than depressing, it’s now frightening. I’ve always had such a positive, can-do attitude, but at the moment I feel that slipping away. I know that falling into that trap of self-pity can have a disastrous outcome so I will make sure to stay away from that but it can be very tough at times. It’s not very often that I allow myself to get beat up emotionally, but there have been times in the depths of my isolation that I have experienced a sort of emotional breakdown. A good cry however can be therapeutic but this typically has to take place when I’m by myself. It’s good to cry those negative feelings out and recharge myself so to speak, putting my life back into perspective. I know there are still many people worse off than me and many more that have gone through the same roller coaster of up-and-down feelings so I’m not alone. I need to kick my spirits up and start becoming inspirational again rather than a downer.
Given the amount of Attacks I’ve suffered through the last year I’ve decided to go back on MS meds. Now I know that given my position on pharmaceutical companies this will sound very hypocritical, but I felt like I had no choice. I was on Tysabri for years and remained very stable for the most part but an attack occurred each time I went off the drug. I still had disease progression I just didn’t suffer any relapses. Since I tested positive for the JCV virus I did not go back on Tysabri and had to choose one of the newer drugs. I ended up going on Gilenya but unfortunately that did not prevent my last attack. It’s not completely uncommon to suffer a relapse while on the drug, but it is disappointing. Rather than switch to the other new oral medication Tecfidera, I decided to stay on Gilenya and hope that it will be more effective in the future.
I think that it will be very good for me to start writing again. I really haven’t had the motivation to write and for most of the last year I haven’t had the ability either. You see, I haven’t been able to type because my hand and fingers get so fatigued that they stop moving after half an hour. Actually, the fatigue comes mostly from controlling the mouse, my fingers haven’t had the dexterity to type properly for a very long time. So not to be deterred I got myself the Dragon NaturallySpeaking program. It is pretty amazing that I can do anything I want on my computer with just my voice and the accuracy of the voice recognition is phenomenal! The only problem is that it’s going to take forever to learn all the commands but hey I guess I’ve got the time.
So as I finish up on this blog you can see why I’ve been MIA for so long, but it’s time for me to get back to living life as best I can. I still have many troubles that plague me but like always I just have to deal with them and carry on. I’ve been a recluse for so long now that it’s time to come out of my shell and enjoy the sun and life. I still have so much to be thankful for and I can’t lose sight of that. Like always, I have no idea where this disease is going to take me to next so I’ll just keep praying and my faith strong.
One last thought that I forgot to mention, TAXES! There are very few advantages to being disabled, but the Disability Tax  Credit is one of them. For any of my MS friends that are located in Canada, this is a program you need to take advantage of if you don’t already know about it. Even though the tax season is over it is still possible to go back and apply for these benefits, but I recommend going to a professional. I’ve been using this tax benefit since before 2004, but as of last year I’ve realized how much I’m leaving on the table. I met up with two gentlemen named Mike and Eric from
The CANADIAN BENEFITS UNION and they were actually able to go back years to make a claim for benefits that I and all my tax preparers had missed. This was no small matter, I received a check for thousands of dollars! My wife and I are expecting a large return this year considering all the money that was spent wasting my time in India. Not sure how much of this will come back, but medical treatments and travel expenses are tax-deductible if not available in Canada. Now I’m just waiting to see what revenue Canada will do with this. Anyway, a free consultation with these guys could bag you a lot of money, it sure worked for me! Check out their website and see what they can possibly do for you:
It doesn’t cost you anything and the federal government may be sitting on a whole whack of your cash!
So until next time, and there will be a next time relatively soon if I can conquer this new voice recognition program,
Take care and God bless.
LC

7 comments:

Jayne said...
This comment has been removed by the author.
Anonymous said...

Hi,

Just found your blog. My hubby has MS and was progressing quite rapidly in recent years, he was at one point in a motorized wheelchair for a while.We have had a lot of success in stabilizing his MS by following Terry Wahl's Program of eating and it has even reversed some of his MS- he uses a walker now, and can even walk around our condo on his own sometimes! Also, for the first time, his MS was not shown to be progressing on his MRI so there really is something to it.
I hope you check it out. BTW, we simplify her diet by juicing most of her recommendations.

Tami said...

So sorry to hear of this turn of events. I completely understand the winter isolation thing and am doing my utmost to enjoy summer as this summers might be the the last of my 'walking' days. Using a walker now but neither travel fast or far and an electric chair for distances. Very scary and not sure how I will handle it. I shower in the tub. I have a bath bench. I sit on the bench, legs outside the tub and while seated, swing my legs into the tub. The shower is hand held. I get out the same way after I dry off in the tub. So far, it is safer and it works. Who do you talk to at Easter Seals to get a wheelchair lift? How does one qualify? I, too will need one to exit my home. Appreciate any info you can provide. Be well.

Shirley Renshaw said...

Hello, I have followed you via your blog over the years. I saw your first interview in 2009 regarding your trip to China. I was going to check this out but, only a few months later Prof. Zamboni came into the picture. So I stopped my research and decided to wait and see. Anyway I could go on but, my purpose is to let you know about this news story I just saw and I am not sure if you have seen it yet ... Here it is!
http://www.winnipegfreepress.com/breakingnews/Sufferers-feel-swindled-288496041.html?cx_navSource=d-top-story
I wish you well and look forward to more postings. When you are able of course.

Unknown said...

thanks for the heads up Shirley,
yes I did see the article, there will be a news story on CBC this evening and likely another one on CTV tomorrow. I'm just happy that justice will finally be served!

Shirley Renshaw said...

Hello again.
I figured you knew but, not sure of your situation and all that stuff that comes with it. Believe me I know about this crappy MS thing. I saw you last night on CBC and am glad you are getting vindicated. I am worried sick for those who still travel there even now knowing. Desperation does play a role but, really?
Take care.

Cindy Bishop said...

My sister told me about this stem cell treatment, so I googled it and found your blog. Thanks for the info. I have had ms since 1990 and have been slowly progressing. I use a power chair and accessible van, as I still teach part time 35 min. From my home in Grande Prairie. I wanted to respond to your blog as I recognized your last name. My inlaws Jerry and Sylvia Bishop know your parents and once mentioned their boys were dx with ms. Your description of showering, etc. will surely help me to express these same difficulties I have to others and maybe find some help. Thanks for. Sharing. I will follow your blog.