Click here to check if anything new just came in.
November 13 2010
November 10 2010
A Tampa Blog #Multiplesclerosis
http://www.recreatingtampa.com/2010/10/22/caleb-and-ms/
Spiny Tim is a haunting journal of a local artist’s battle with primary progressive multiple sclerosis (PPMS).
“It is difficult for me to write about my condition, because to commit to paper, so to speak, is to make it real. And even now, I am loath to make it real.
“Every morning I wake diminished, and I think to myself: if I don’t get any worse than this, then I will be able to go on. I will be able to relieve myself, put some food in my stomach, take care of the dog and the cat, and go be productive for someone. Every morning I wake to find that my hands are more useless, curled, and insensate, add that my legs are more distant meat objects, useful as stilts, perhaps, but not much else.
“And every morning I wake with fewer words.”
Spiny Tim once kept a blog titled Calebism, where he posted occasional images of his art.
October 23 2010
primary progressive #ppms #multiplesclerosis
Interview with… Debbie Purdy « ‘i interview interesting people’
‘i interview interesting people’
twitter.com/robandale – facebook.com/robdaleworks
Interview with… Debbie Purdy
with one comment
Debbie Purdy, who suffers from multiple sclerosis, is the face of Britain’s right-to-die campaign. She doesn’t want to die. She has ‘far too much to live for’. But when the time comes, and the pain is so unbearable that she cannot go on, she wants her husband to be by her side, holding her hand until the end; and she wants to know that he won’t be arrested.
Debbie Purdy’s legal battle then was all about clarifying the law so she knew whether or not the authorities would prosecute her husband Omar if he helped take her to the Dignitas clinic in Switzerland to die. As the majority of comments left on my facebook note were highly pro-assisted suicide, I thought this interview would best serve the public interest if it opened up the story behind Debbie’s legal battle and allowed for a deeper understanding of why her and Omar believe so passionately that assisted suicide should be legalised in the UK
The first aim of the interview was to identify what multiple sclerosis (MS) actually means and its effects on the human body. So my initial question was quite simply, 15 years on from being diagnosed with MS, what is Debbie’s physical state?
Debbie said that really she is just the same as anyone else, everyone has problems, it’s just that 15 years of this MS means she is now in a wheelchair.
Debbie has primary progressive MS – she explained that this means that your central nervous system is like the wiring in your house. If the plastic protection on the wires becomes broken, the flow of electricity to certain areas stops. And that is exactly what is happening with Debbie – the current that flows from her brain to her muscles instructing them what to do is simply getting lost somewhere along the way.
October 18 2010
Being Here Now, Reluctantly #ppms #multiplesclerosis
from flickr
I got hit with galloping ppms late last year, and so I’m still kind of in shock, having gone from zero to 6.5 on the disability scale in just a few months. But I can sincerely say that for the first time in my life I am fully living up to my potential, in that everything I do from petting my dog to composing this reply takes 100% of my attention. Anything less results in injury or failure. I would say that ppms is a high price to pay for the ability to be fully present in this moment, but it is something. And although I am in a highly precarious position and have never been as vulnerable and helpless and hopeless as I now find myself, I am too involved in surviving this moment to do much worrying about anything. I wonder if this is what being very very old is like?
October 17 2010
#ppms #multiplesclerosis
meds for primary progressive? | healthboard
Hi All,
I am brand new to this board, being diagnosed only yesterday. My neuro says he thinks I have primary progressive MS. He says there are no treatments/meds for this type. Is this really true? I would appreciate any input you might be willing to offer. Thanks!
Answer:
Answer:I’m sorry to hear of your diagnosis. Unfortunately I think your doctor is right. There are no treatments currently approved for PPMS. There is one approved for Secondary Progressive which is called Novantrone. I take that drug. It is a chemo therapy drug. Not sure if it would be helpful to you or not. I’m hopeful that better treatments for all types of MS are not too far off. By not too far, I mean within 5 years.
One caution I will give you. Having a chronic illness with no cure or treatment, makes many people susceptible to charlatans and frauds selling “alternative” treatments and cures that are not proven to be either safe or effective. I encourage you to be very skeptical of any such products.
October 16 2010
Waking Up With #Multiplesclerosis
I am learning to write with speech recognition, so please forgive any irregularities.
It is difficult for me to write about my condition, because to commit to paper, so to speak, is to make it real. And even now, I am loath to make it real.
Every morning I wake diminished, and I think to myself: if I don’t get any worse than this, then I will be able to go on. I will be able to relieve myself, put some food in my stomach, take care of the dog and the cat, and go be productive for someone. Every morning I wake to find that my hands are more useless, curled, and insensate, add that my legs are more distant meat objects, useful as stilts, perhaps, but not much else.
And every morning I wake with fewer words.
Related articles
October 14 2010
A brief history of my illness.
About 18 months ago I began to experience numbness and tingling in my hands. Since I had no other symptoms and since the sensation was very much like carpal tunnel syndrome, I did a little research and concluded that my problem was most likely cubital tunnel syndrome. By last fall I was having a little difficulty writing my bicycle. By last Christmas I was dragging 1 foot. By last spring I concluded that I had primary progressive multiple sclerosis or something very much like it.
Now I am about a 6.5 on the multiple sclerosis disability scale. I’ve never had a remission; I have never awoken better than when I went to sleep.
My hands haven’t worked for some time, so I am learning to use voice recognition software to write with. Please forgive any irregularities.
Related articles
- Depression, Suicide and Multiple Sclerosis #MultipleSclerosis (spinytim.com)
- Ah, Crap… (spinytim.com)
Well, I Could Use Some Palliative Care, Anyway…
One Health Blog – Q&A About Health! » What could be a trigger factor of multiple sclerosis?
Management of progressive MS
Treatment of progressive MS is more difficult than relapsing-remitting MS, and many patients do not respond to any therapy. A wide range of medications have been used to try to slow the progression of disease. Many therapies have been shown to have some effect on disease progression and resulting disability, but most therapies have significant side effects which limit their long-term use. Therefore they are often appropriate only for the most rapidly progressive cases. Azathioprine, cladribine, and ciclosporin have all shown small benefits, which in most cases are outweighed by side effects such as an increased cancer risk. Mitoxantrone, a chemotherapy drug, offers a significant reduction in progression to disability, but causes dose-dependant cardiac toxicity which limits its long-term use. Bone marrow transplant, plasmapheresis, and total lymphoid irradiation (exposure to high doses of radiation in order to kill parts of the immune system) have been studied and are currently reserved for the most dire cases. Cyclophosphamide and methotrexate are chemotherapy drugs which can slow the progression of MS, but which also have a number of side effects. Frequent courses of high-dose corticosteroids, often given weekly or monthly, are also commonly employed to good effect. Interferons show promise in secondary progressive MS, but more data is needed to support widespread use.
October 11 2010
More About MS Hug, Baclofen #multiplesclerosis
It feels like a tight elastic girdle made of giant ace bandages, right down to the delusion of sweaty abrasion, from nipple level to pelvis. The pressure is weird, but bearable, but the illusory abrasion feels like my whole torso is being sanded with rock salt, and yet there is a numb Novocaine layer of flesh beneath it.
But, then, my hands feel the same, plus extra numbness to the bone, which distracts me from “the ms hug.”
Oh,& I take a buttload of Baclofen I get mail-order from India, but I am going broke, and as a broke USA citizen, I am anticipating some bad withdrawals. Which kind of sucks, considering Baclofen has no fun side effects at all.
Related articles
- Is It Wrong To Be Numb? #multiplesclerosis (spinytim.com)
- Multiple sclerosis – All Information (umm.edu)
Ah, Crap… Gray Matter Is The Only Matter That Matters At All… #multiplesclerosis
Regional gray matter atrophy in early primary prog… [Arch Neurol. 2006] – PubMed result
BACKGROUND: Gray matter (GM) atrophy has been reported in multiple sclerosis (MS). However, little is known about its regional distribution.
OBJECTIVE: To investigate the regional distribution of GM atrophy in clinically early primary progressive MS (PPMS).
DESIGN AND PATIENTS: Thirty-one patients with PPMS within 5 years of symptom onset (mean age, 43.2 years; median Expanded Disability Status Scale score, 4.5) and 15 healthy control subjects (mean age, 43.7 years) were studied. All subjects underwent a 3-dimensional inversion-recovery fast spoiled gradient-recalled echo sequence that was repeated after 1 year in patients only. Magnetic resonance images underwent an optimized voxel-based morphometric analysis that segments magnetic resonance data volumes in a normalized space and quantifies tissue atrophy on a voxel-by-voxel basis. A lesion mask was created for each patient and used in normalization and segmentation steps to minimize bias from lesions. A multisubject design was used in the cross-sectional study to compare patients with PPMS and controls. A 1-way analysis of variance (within-subjects) design was used in the longitudinal study.
RESULTS: At baseline, patients with PPMS displayed bilateral thalamic atrophy compared with controls. In addition, a significant association between lesion load and decreased GM volume was found for the thalami. Loss of GM in the putamen, caudate, thalami, and cortical and infratentorial areas was observed in patients after 1 year of follow-up.
CONCLUSIONS: Atrophy is most obvious in deep GM in clinically early PPMS. This may reflect increased sensitivity of these regions to neurodegeneration. Cortical and infratentorial atrophy developed as the disease evolved.
[Caption]
Is It Wrong To Be Numb? #multiplesclerosis
Emotion, Ethics
If a person fails to feel pain or suffering for events which usually bring such things about – if they don’t miss their family or home while away, or if they don’t grieve for dead relatives or pets, or if they don’t get upset when they fail an exam or lose their job – is it sensible to hold them somehow for flawed, or to claim that they are inhuman? Is emotional numbness or indifference a moral wrong?
October 7, 2010
Response from Charles Taliaferro on October 10, 2010
Great question! You have definitely (in my view) described a disturbing emotional indifference or numbness, but this may not be due to any moral wrong. People might be in such a condition because they have suffered some great trauma or brain injury through no fault of their own. Philosophers have differed in terms of their view of how natural it is for us to empathetic or have sympathy for one another –Aristotle and Locke think we are desposed to care for one another whereas Hobbes almost sees friendship as something we are drawn to for reasons of prudence and self-concern (caring for others is a kind of strategy for us to avoid premature violent death). In natural law theory, lack of concern for the dead or an indifference to personal failure or failing to honor family may be seen as failures to exercise important human virtues (whether or not this is due to a vice or an innocent injury). But some philosophers in ancient Greece taught that we should try to give up desires and attachments –not all Stoics did, but some saw this as an important goal. Even so, the person you are describing may not so much be in the grip of a philosophical theory, as much as they are suffering from a disorder that has an organic or chemical base.
Maybe Soup is currently being updated? I'll try again automatically in a few seconds...
