Wednesday, February 19, 2014
Another good article: "It’s this damn worsening disability, this insidious wasting away that threatens to shake my resolve. Whatever I do, it’s never enough. MS cannot be placated. It demands so much of me, and then it demands more." Enjoying the Ride article.
Monday, February 3, 2014
Saw the urologist today. My plumbing is so much better than the first time I saw him (just before my Polish liberation treatment in 2010) that he says there is no need for my annual checkup any more. A few months after my CCSVI treatment I stopped taking the meds he had me on. Over the years since I first saw him, my urological symptoms have improved. That, my reduced fatigue and better balance all improved after my treatment. A coincidence? I don't think so. Even as other symptoms (especially strength and control of my left arm and leg) continue to worsen, I am still reaping the benefits of my trip to Katowice.
|With daughter Anna, while on our multi-vineyard tour of South Australia at Christmas and New Years. Good thing my plumbing works better!|
Thursday, January 30, 2014
It's been six weeks since I last posted, mostly because we were in Australia and New Zealand to spend Christmas and New Years with the kids, not because there was nothing to report. I wonder if I still have any readers? In any case, assuming there are still one or two of you checking in once in a while:
Kids collaborating to push me up a big hill in
South Australia... amazing how a small incline
can make pushing SO much harder.
- In two weeks it will be exactly 10 years since I was diagnosed: February, Friday the 13th, 2004. A lot has changed in that time.
- Strength and control of my left arm and leg continue to deteriorate, and the numbness and loss in dexterity in my right hand is getting a little worse. I walk with poles or a cane outside of the apartment. In Oz and NZ I was wheeled around in a rented wheelchair, mostly by our kids. Winter, for me, is hell: the icy parking lots are a fall and broken leg waiting to happen. The idea of spending winter in a climate that has no snow or ice looks better all the time.
- My left leg swells in warm weather (and on flights), and turns to ice in cold weather. I would say that this has gotten worse over the last year.
- I had a shortness of breath while in Australia and NZ, and it has continued since I returned. Its like the feeling you get when you've had too much turkey at Thanksgiving: like your lungs can't expand enough to take a full breath. It reminded me of the time on a trans-Pacific flight in the 1990s when I got short of breath, either because of an allergy or because the pilots had lowered oxygen levels (to save fuel). Some (most) of the times I've felt this, it was accompanied by that old "MS hug" feeling that I haven't noticed often since I returned from my treatment in Poland (almost 4 years ago!). My GP says my lungs and heart sound good, though he'll have more tests done.
- On the other hand, and speaking about the results of CCSVI treatment in Poland, I continue to have good balance and my autonomic functions remain greatly improved. Now sometimes my balance seems worse because I trip over my semi-useless left leg, but that is simply because it's hard to walk with such an appendage. My energy is also still much better than before I went to Poland, though this winter I seem to want to take naps after lunch, and some afternoons that turns into hours-long hibernation. However, it isn't (usually) accompanied by that heavy, lethargic, stunned feeling I used to get before my "Zamboni" treatment.
- I continue to do physio with a therapist who is really interested in trying to help me get the most out of my diminished capabilities, and Pilates with an instructor who is equally engaged in my situation. I've not gone to yoga since coming back from vacation, but that's because the icy hillside parking lot at the yoga place is just too daunting. I didn't do any of those while on vacation, but am now (slowly) working my way back into my daily routine of physio and/or Pilates and/or yoga.
- We've decided to get me a scooter in the spring: I'm bowing to the reality that, except for biking, there is now way for me to get around any distance without a car. This way, I'll be able to go out for "walks" with Mary and even on longer bike rides (I can only bike for about a half hour). I should have done this last spring, and not had a summer of reduced activity.
- As far as drugs go, I'm still on arthritis, spasm and nerve pain drugs that seem to be working (at least making things better than they otherwise would be). After discussing it with my GP, I've decided to stop taking Lipitor (for my cholesterol), at least for a few months. I've been taking it for over ten years, and my doc agrees that, given my other problems, chancing higher cholesterol while testing to see if any of my "MS" symptoms get better after dropping Lipitor is a worthwhile risk.
- There has been a lot of news on the MS research front: results both supporting and denying the existence and/or treatment of CCSVI, stem cell research that looks interesting, and even our old "friend" Dr. Freedman is publishing results of his multi-year study into his technique of killing the immune system, then building it up again using bone-marrow cells. A lot to digest, but If I have any thoughts on it, I'll put them into a future post.
- Finally, I should note that I am now on a disability pension from CPP and could have been since I retired. Still, once I was on it, they also gave me 15 months of "back-pay". Besides giving me a little more than my "reduced at age 60" CPP, it also means that when I get back on regular CPP (at 65), it won't be reduced. Since getting it I've realized that a) I only found about it by accident and b) there are a lot of other people out there who don't know about it, who should. Spread the word!
|The scooter I'm considering is the Pride Pursuit XL, pictured here.|
Tuesday, December 17, 2013
I started on Nabilone this summer (for my sciatic nerve pain) and on Baclofen (for spasms) this fall. The Nabilone has definitely made a difference in my sciatic pain, noticeable after several weeks. This is the second time I've tried Bacoflen: the first time I gave up after a couple weeks because I felt that it made me feel drowsy without any noticeable benefit, but this time it really seems to have made a big difference in my spasms. Do Baclofen and Nabilone make me drowsier? I'm not sure, but so far I would say that the benefits outweigh the side effects.
Monday, December 9, 2013
Monday, November 18, 2013
Friday, November 15, 2013
This is quite unusual: Dr. McDonald sues Dr. Freedman for libel (National Post article). Dr. Freedman is the neuro who has been vehemently against CCSVI, while Dr. McDonald is a surgeon who believes that occluded veins should be opened regardless of any relationship to MS. Malicious intent is pretty hard to prove, but I'm glad that Dr. McDonald is standing up to a bully.
Friday, November 1, 2013
Here is a link to research that seems to show that MS patients have a high prevalence of impeded blood flow to the brain: http://www.jvir.org/article/S1051-0443(13)01393-6/abstract. I hope they use the same technique to see how different that is from blood flow in patients without MS.
As a MS blogger, I regularly receive notices of research, treatments, "cures", etc. When I see something worthwhile, something that may not be total BS, I pass it on:
For your blog, three recent studies have been published focused on the cognitive side of multiple sclerosis (MS). Each study was published by researchers at Kessler Foundation (West Orange, N.J.) —studies that could eventually lead to cognitive therapies being approved for reimbursement by insurers.A small piece in a large puzzle, but may lead to something useful someday.Many know that physically, MS can cause muscle rigidity, pain and paralysis. Lesser known are the cognitive effects -- including fatigue, trouble with memory and speech.One Kessler Foundation study, funded by the National MS Society, found that people with MS performed worse on processing speed and memory tasks during warmer outdoor temperatures versus during cooler outdoor temperatures.The second study, also funded, in part, by the National MS Society, sheds light on cognitive fatigue in people with multiple sclerosis. Cognitive fatigue is fatigue resulting from mental work rather than from physical labor.Meanwhile, the third study provides the first evidence for beneficial effects of aerobic exercise on brain and memory in people with MS.Interested in learning more? Please email me or call me at (856) 296-0741 to discuss.Thanks,Adam DvorinWinning Strategies PR
Friday, October 25, 2013
Here is another book on living with MS, but caution: the book is sponsored by a drug company. If anyone reads her story, let me know what you think:
An MS patient advocate named Kristie Salerno Kent has recently completed her memoir: Dreams: My Journey with Multiple Sclerosis. Her book, available free at www.DreamsTheEbook.com, is an inspirational example of the triumph of the human spirit and choosing to live life to the fullest after a diagnosis of MS. She is also now touring and singing at many MS- focused events around the country.
Dreams has been positively received by the MS community. As one reviewer wrote:
“Kent tells her story so candidly that you can’t help but to hope the end of ‘this’ part of her journey ends well and, when she shares the ups and downs, you admire her for her strength, nod in recognition of her denials and finally smile about her using her talent as an MS ambassador.” Examiner.com.
Trevis Gleason who has an MS blog on Everyday Health also reviewed her book and said:
“I found Kristie’s honesty about her search for explanation while simultaneously trying to avoid the much sought-after answers refreshing. I too could relate to explaining away or ignoring until the disease would no longer be disregarded.“
Might you be interested in featuring a “guest post” from Kristie on your blog that details her experience with MS? You can also post excerpts from her book on your blog as well. And she is available to answer any questions via email.
Thanks very much for considering and have a great day,
AndreaAndrea CoanBerry & Company Public Relations, LLC57 E 11th Street6th FloorNew York, NY 10003T: 212 253-8881 F: 212 253-8241