The National Multiple Sclerosis Society estimates that over 400,000 people in the U.S. have been diagnosed with multiple sclerosis, and there are millions more worldwide. Conservatively speaking, half of them will encounter varying degrees of cognitive difficulties. Facing the Cognitive Challenges of Multiple Sclerosis brings this hidden disability into the open. It is an essential resource that will educate individuals coping with multiple sclerosis, and inform their families, caregivers, doctors and therapists.
This new edition has been revised with on-point cognitive strategies and updated MS resources. The book includes a new foreword and chapters that follow Jeffrey’s journey since 2006. He openly explores some MS physical symptoms, which may accompany the thinking impediments that strike at his cognitive awareness and functions. Jeffrey carves a path of finding physical and cognitive wellness, as well as weighing the need to accept beneficial MS medical therapies. Not only did he become more active in the movement to cure MS, the progression of his MS led to a more controversial MS treatment, in effort to make his disease manageable. Jeffrey also shares the benefits of introducing a “safety person” into a life with MS and the strength gained from helping others, even while they may be assisting you.
Whether or not a person is dealing with the cognitive issues associated with multiple sclerosis this book deserves to be on the bookshelf of every individual who is dealing with multiple sclerosis.
“For those of you with cognitive imapirment you may want to try the MS Trust’s Staying Smart site.”
'the progression of his MS led to a more controversial MS treatment': What treatment is this?
Possibly treatment for CCSVI or stem cell therapy? Those two are both controversial.
Does the fact that Alemtuzumab causes a stable magnetisation transfer ratio (unlike other DMTs) suggest that it will have a greater impact on cognitive issues than just it's relapse stopping properties? Have any studies on Alem and cognitive issues been done? How does SPMS and cognitive issues interact? Is cognitive impact more related to the impact of relapses in RRMS (and consequent accummulation of lesion load) rather than axon death for SPMS which causes more physical symptoms? Or, most likely, don't we know? Finally, before yet more fear is put upon us, isn't semi-dementia type cognitive impact (as the intro to this post suggests this poor man suffered) quite rare in MS (as opposed to, still very troubling but a little less dramatic 'cog-fog' as its often described)?
Re: "How does SPMS and cognitive issues interact? Is cognitive impact more related to the impact of relapses in RRMS (and consequent accummulation of lesion load) rather than axon death for SPMS which causes more physical symptoms? Or, most likely, don't we know? "We think cognitive impairment is related to gray matter or cortical disease. The burden of cortical disease is greater in SPMS, which explains why cognitive impairment increases with time and is greater in MSers with progressive disease.
Re: "Finally, before yet more fear is put upon us, isn't semi-dementia type cognitive impact (as the intro to this post suggests this poor man suffered) quite rare in MS (as opposed to, still very troubling but a little less dramatic 'cog-fog' as its often described)?"Rare? In the pre-DMT era this was not rare at all. Now that we are in the DMT era and delaying disease progression and reducing disease activity it is my impression that we are protecting cognition. However, cognitive impairment remains a big problem and when you test for it in MSers with well established disease the majority have subtle abnormalities. This is another reason for recommending active early treatment and avoiding the trap of therapeutic nihilism.
Re: "Does the fact that Alemtuzumab causes a stable magnetisation transfer ratio (unlike other DMTs) suggest that it will have a greater impact on cognitive issues than just it's relapse stopping properties? Have any studies on Alem and cognitive issues been done? "That is the interpretation. Unfortunately, Genzyme don't have robust data on cognition. Please note hat Alemtuzumab is not the only drug that impacts on MTR; other do it as well and therefore are also thought to be neuroprotective.
Which others do we see stable MTR? I've looked for data on MTR and BG12 but can't find anything.
The BG12 MTR data will be presented at ECTRIMS by Doug Arnold; I am a co-author on the abstract!
That's exciting news. We will all look forward to that. Sounds more and more like BG 12 is a possible less aggressive alternative to Alemtuzumab; would you agree? Do you think – looking at long term prognosis – BG12 is in the same league as Alem or is Alem still the gold standard in treatment?
Why not both? Pharma has tested using GA or IFNB as add ons after alemtuzumab- but who would want to inject again? but taking a daily pill as a neuroprotective wouldn't be a problem. Except of course there haven't been any trials at using B|G12 as an add on to alem, nor are there any in the pipeline.
BG12 has been trialled as an add on to IFN. I think Alem followed by BG12 would be the dream combo (trial or no trial) and is what I'll be pushing my neuro towards once available.
Prof G – is what you refer to different to the MTR element of the DEFINE study where BG12 showed increased MTR with placebo all showing decreases? What can we make of increases as opposed to stable (which is all Alemtuzumab achieved)? Does that suggest repair as well as protection?? With this plus it's safety profile is BG12 the paradigm changer and not Alem after all?
Well the analysts think so; some think it will be a blocker buster MS drug with the biggest share of the market! I am not sure; how it is priced will affect its uptake. What is interesting about BG12 is its mechanism of action! What is this telling us about MS?
The gold standard treatment is interferon-beta; the first licensed DMT.
If BG12 actually helps to promote repair, and it does not have the risks that come with immuno-suppressants, then the previous commenter may be right about it being a bigger paradigm changer.I'm very concerned about how BG12 will be priced. A lot of us are waiting for BG12 to get off natalizumab and other risky drugs.I doubt it will happen, but if Biogen prices it low they could just take over the MS drug market
What does the increase in MTR in BG 12 tell us as opposed to stable MTR with Alem and decreasing MTR in Placebo or IFN/GA?
The real question is does the greater efficacy and ease of administration (1 x per annum) of Alem outweigh the much greater safety and potentially greater neuroprotective powers of BG12? As Prof G is involved in both drugs in different ways he probably can't venture an opinion on this (can you Prof?).
Ease of administration (1 x per annum)..remember there will be monthly checkups (bloodsamples?) for 5 years…so not as easy as first thought.Until NICE give the guideence about if and how these drugs can be prescribed then our opinions are of limited merit.
In the Amazon reviews for this book many people talk of how they stopped work because of cognitive issues. It's v depressing from the point of view of a very young MSer Because many questions and decisions become really difficult: what stream of study to choose, where to study, what career to aim for, will it be too demanding (physically/cognitively), what happens if there is more progression, …
Severe cognitive impact to this degree is quite unusual (as oppose to more subtle impact). In the DMT era you should be able to minimise the effects enough to not need to curtail your career choice because of it. Aim for what you want, get on a good treatment and live your life.
I agree that it is important to remember that while no two persons with MS are the same, it seems well established [studies and clinical articles] that the majority will deal with some level of cognitive interference. The decision to retire due to a cognitive disability is complex and should not be dismissed as a rarity for MS. In fact, problems with memory are the leading cause of separation from employment.If you want to see persons with MS share their coping skills, then check out the MS Trust's StayingSmart videos with Mr. Gingold. It seems that the MS Trust also brought him over from the US to present to the MS medical professionals. Perhaps, we should do the same.
'Aim for what you want and live your life' is easier said than done. Not wise to spend years training for something that already seems difficult with current disability. And it's not realistic to assume no progression
Mr. Gingold's book and experiences seem to mirror my life (except I'm a female). I am 40 now, and work in medicine as opposed to law, but, my with my cognitive issues deteriorating, I feel I must face the inevitable. I wish I could contact him. Unfortunately, I do not have the strong family support system that he has. This is my only deterrence at facing this challenge. M.S. is such an unpredicatable, horrific, life changing disease. I feel like I'm under a black cloud all of the time.
Find you local MS Society to be directed to a MS counselor or support group in your area. You don't have to go through these "adjustments" alone.
Am I the only one who finds it somewhat comical that this particular book is not available in large print?
Just check with his publisher [Demos Health Publishing] in NYC and they can connect you with the author, Mr. Gingold.
Anyone can probably reach out to Mr. Gingold through his publisher in New York and yes, I saw the book in large print. I understand that he travels world-wide to present the MS cognitive topic, but never accepts a fee for his efforts. Nice.