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December 15 2010
He Who Remains Vertical Wins
Wholly stolen from Johnny P’s new blog Living With Multiple Sclerosis
Some rules that I live by
Think before you act – don’t just jump up and do something because you’ve done it for years before you got MS. Your body may not work the way it used to. Sit back and visualize first what you have to do or where you need to go.Have a plan – plan each step or action first in your mind. Think about what it’s going to take to get from point A to point B before taking action. Break up longer ventures into smaller segments and do one segment at a time. Plan rest stops along the way and use them until you know for sure that you can bypass them. Put a cordless or cell phone in your pocket. Keep your hands free for grabbing if need be.
Don’t take chances – the last thing we want is to end up on the floor. Analyze the task at hand. If you’re not sure you can do it, don’t do it alone. Wait until someone is around that can spot you in case you need a lending hand along the way. If your at all like me, and many of you are, you don’t like to ask for help. MS’ers, are typically movers and shakers. think of the worst case scenario. if you can manage that worst case, then go for it. i do. but, if its going to mean putting you in a situation you don’t want to be in or don’t want to deal with, asking for help is going to save you grief. choosing when to ask for help is a learned behavior. it really depends on ones own abilities. you’ll learn..Learn and become aware of your capabilities. Once you know you’re able to do it alone, you’ll be more comfortable doing it again.
Plan for the worse – Avoiding falls is our number one priority. If you have a task that you routinely do and if it ever resulted in a fall, even once, there’s a chance that it might happen again. Be aware of your vulnerable task. Put a cordless phone on the floor in the general area just in case. IE. Getting in and out of the shower.
Save Energy – don’t rush, Try to do things right the first tim
Related articles
- Staying on Your Feet With MS (everydayhealth.com)
December 11 2010
November 13 2010
November 10 2010
Feels Like This
Going Blind
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.
November 02 2010
Good Summation, Eileen
Living the MS Life: Primary Progressive MS
Primary Progressive MS is the saddest MS course to me. About 10% of people with MS have PPMS. From the beginning one who has this type has gradual continual worsening of MS symptoms. There may be a little fluctuation and temporary improvement but no relapses. There is no real treatment for this type of MS and most have trouble walking in various degrees. My Mom had Primary Progressive MS and it was so upsetting to see her get worse right before my eyes and I could do nothing.
Technorati Tags: ppms
October 29 2010
Data against CCSVI role in ms, Multiple Sclerosis, #multiplesclerosis, #ppms,, primary progressive Multiple Sclerosis,
Data against CCSVI role in MS
Although the Zamboni papers have been quite supportive of CCSVI, there are a growing number of papers that raise serious questions about its validity. In early 2010, Khan et al described a number of independently accepted characteristics of venous disease and MS that contradict the CCSVI theory.6
1.
Similar to other autoimmune diseases, MS is more common in young women while chronic venous insufficiency syndromes are not.
2.There are well known strong epidemiological associations between MS and geography, ethnicity, sun exposure, low vitamin D levels, gender, genetics and immigration studies that are not mirrored by chronic venous insufficiency.
3.Central veno-occlusive disease can lead to syndromes of idiopathic intracranial hypertension, ischemic and hemorrhagic infarcts and edema, none of which is typically seen in MS patients.
4.Vascular abnormalities related to chronically diminished venous flow would be expected to increase over time, yet after the age of 50 years the incidence of MS is quite low.
5.There is no other model of decreased venous drainage and an organ specific immune response.
6.Transient global ischemia is known to occur with jugular insufficiency but this entity is not seen in MS.
7.Radical neck dissections remove all jugular veins but they have never been seen to cause MS.6
October 25 2010
Dr. Novella #CCSVI #multiplesclerosis #skeptic
NeuroLogica Blog » CCSVI – The Importance of Replication
Scientists and skeptics are familiar with this pattern – a preliminary study suggests a wildly new understanding of a scientific or medical question. The scientific community is cautiously skeptical but interested. The press proclaims a stunning breakthrough, and the public is briefly fascinated. If the new discovery concerns a medical treatment, the community of those affected become fixated on the potential new “cure”, and many start demanding treatment based solely on the preliminary evidence. But then the wheels of research begin to grind and, more often than not (because that is the nature of discovery) the new idea turns out to be wrong – it fails the critical step of replication.
Related articles
- CCSVI – The Importance of Replication (theness.com)
- Consolation From The Cat #multiplesclerosis (spinytim.com)
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.
I’ve Gone From 0 to 6.5 in 7 Months; I Don’t Like This Trend.
In fact, I may start getting worried sometime soon.
Lisa Emrich
In August 1955, Dr. Kurtzke published the Disability Status Scale (DSS) which is used to evaluate a patient’s impairment due to MS on a 10-point scale. In 1983, Dr. Kurtzke published the Expanded Disability Status Scale (EDSS) which has the advantage of evaluating all major neurologic areas.
Although the EDSS lacks sensitivity to short-term changes in a patient’s status, it is used extensively in national and international trials to evaluate the effectiveness of therapy. It is heavily weighted toward ambulation assessment and fails to assess cognition, upper extremity function, and fatigue.
Fundamental to the EDSS is the Functional Systems (FS) Scale which evaluates seven areas of the central nervous system which control bodily functions (0 = normal function and 6 = unable to complete task). The FS scores are especially important in the less severe forms of disability where a patient may have same abnormal disability but is otherwise still ambulatory.
The Functional Systems (FS) include:
Visual
Brainstem (speech and swallowing)
Pyramidal (ability to walk)
Cerebellar (coordination)
Sensory (touch and pain)
Bowel and Bladder functions
Cerebral/Mental
Please note that the EDSS steps 1.0 to 4.5 below refer to patients who are fully ambulatory and the precise step number is defined by the Functional System Score. EDSS steps 5.0 to 9.5 are defined by the impairment to ambulation and usual equivalents in Functional Systems scores are provided.
Here is a summary of EDSS scores (source NMSS) -
* 0.0 – Normal neurological exam (all grade 0 in all Functional System (FS) scores).
* 1.0 – No disability, minimal signs in one FS (i.e., grade 1).
* 1.5 – No disability, minimal signs in more than one FS* (more than 1 FS grade 1).
* 2.0 – Minimal disability in one FS (one FS grade 2, others 0 or 1).
* 2.5 – Minimal disability in two FS (two FS grade 2, others 0 or 1).
* 3.0 – Moderate disability in one FS (one FS grade 3, others 0 or 1) or mild disability in three or four FS (three or four FS grade 2, others 0 or 1) though fully ambulatory.
* 3.5 – Fully ambulatory but with moderate disability in one FS (one grade 3) and one or two FS grade 2; or two FS grade 3 (others 0 or 1) or five grade 2 (others 0 or 1).
* 4.0 – Fully ambulatory without aid, self-sufficient, up and about some 12 hours a day despite relatively severe disability consisting of one FS grade 4 (others 0 or 1), or combination of lesser grades exceeding limits of previous steps; able to walk without aid or rest some 500 meters.
* 4.5 – Fully ambulatory without aid, up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance; characterized by relatively severe disability usually consisting of one FS grade 4 (others or 1) or combinations of lesser grades exceeding limits of previous steps; able to walk without aid or rest some 300 meters.
* 5.0 – Ambulatory without aid or rest for about 200 meters; disability severe enough to impair full daily activities (e.g., to work a full day without special provisions); (Usual FS equivalents are one grade 5 alone, others 0 or 1; or combinations of lesser grades usually exceeding specifications for step 4.0).
* 5.5 – Ambulatory without aid for about 100 meters; disability severe enough to preclude full daily activities; (Usual FS equivalents are one grade 5 alone, others 0 or 1; or combination of lesser grades usually exceeding those for step 4.0).
* 6.0 – Intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting; (Usual FS equivalents are combinations with more than two FS grade 3+).
* 6.5 – Constant bilateral assistance (canes, crutches, braces) required to walk about 20 meters without resting; (Usual FS equivalents are combinations with more than two FS grade 3+).
* 7.0 – Unable to walk beyond approximately 5 meters even with aid, essentially restricted to wheelchair; wheels self in standard wheelchair and transfers alone; up and about in wheelchair some 12 hours a day; (Usual FS equivalents are combinations with more than one FS grade 4+; very rarely pyramidal grade 5 alone).
* 7.5 – Unable to take more than a few steps; restricted to wheelchair; may need aid in transfer; wheels self but cannot carry on in standard wheelchair a full day; May require motorized wheelchair; (Usual FS equivalents are combinations with more than one FS grade 4+).
* 8.0 – Essentially restricted to bed or chair or perambulated in wheelchair, but may be out of bed itself much of the day; retains many self-care functions; generally has effective use of arms; (Usual FS equivalents are combinations, generally grade 4+ in several systems).
* 8.5 – Essentially restricted to bed much of day; has some effective use of arm(s); retains some self-care functions; (Usual FS equivalents are combinations, generally 4+ in several systems).
* 9.0 – Helpless bed patient; can communicate and eat; (Usual FS equivalents are combinations, mostly grade 4+).
* 9.5 – Totally helpless bed patient; unable to communicate effectively or eat/swallow; (Usual FS equivalents are combinations, almost all grade 4+).
* 10.0 – Death due to MS.
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.
October 04 2010
Consolation From The Cat #multiplesclerosis
and if I ever lose my hands
lose my plough, lose my land
oh, if I ever lose my hands
oh, well…
I won’t have to work no more
and if I ever lose my eyes
If my colours all run dry
yes, if I ever lose my eyes
oh well …
I won’t have to cry no more.
and if I ever lose my legs
I won’t moan and I won’t beg
oh if I ever lose my legs
oh well…
I won’t have to walk no more
And if I ever lose my mouth
all my teeth, north and south
yes, if I ever lose my mouth
oh well…
I won’t have to talk…
CAT STEVENS – MOONSHADOW LYRICS
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