I think I've spotted the next part of my symptoms. A look at my shoes shows that the heel is starting to be pushed outwards. I think this means that my gait must be changing. Interestingly it is noticeable on my left shoe more than my right shoe. The effect is slight, and I've had these shoes for a while.
Just thinking, if my heels are starting to poke out, I suppose that my knees must be getting closer together. I base this supposition on the scenario that its a walking thing, each step pushes my weight out and I dont think that my feet are further apart. I cant work out if my toes are pointing in more, and I'll need to do some more observing.
I'll also keep a lookout on my other pairs of shoes, as it's just one pair at the moment.
Also, on a similar front, I've noticed that I now have 'skid marks' on the cill of my car door where my right foot has slid over rather than me lifting it over after sitting down. I've only just noticed these marks, which perhaps suggests that its a fairly recent thing, having had the car for getting on for four years.
Overall, My conclusion is that my symptoms are starting to progress, and my wife has also noticed that my walking appears more difficult when I am tired or carrying heavy weights (3 year old boy sized). I wonder how long I'll be able to claim "no significant symptoms"....
Friday, 15 June 2012
Sunday, 3 June 2012
Researchers - Most published
OK, a bit more number crunching on the papers I downloaded. There are over 2500 researchers who have contributed to the 589 different papers - so that's on average some 4-5 people per paper. A list of 2500 researchers would be a silly thing to put here, so I've limited as follows:
* Anyone who has been an author on 10 or more papers
* Anyone who has been an author on 5 or more papers when the most recent paper is 2010 or later
* Anyone who has been an author when the most recent paper is in 2012
This gives 103 researchers, sorted by papers, last year, then name.
I haven't yet worked out how to convert the funny characters into proper letters. A later (potential) task for another day is to find a biography of each.
* Anyone who has been an author on 10 or more papers
* Anyone who has been an author on 5 or more papers when the most recent paper is 2010 or later
* Anyone who has been an author when the most recent paper is in 2012
This gives 103 researchers, sorted by papers, last year, then name.
I haven't yet worked out how to convert the funny characters into proper letters. A later (potential) task for another day is to find a biography of each.
| Author | Number Papers | First Year | Last Year |
|---|---|---|---|
| Brice A | 28 | 1999 | 2010 |
| Stevanin G | 27 | 2004 | 2011 |
| Fink JK | 23 | 1995 | 2010 |
| Crosby AH | 20 | 2001 | 2010 |
| Durr A | 19 | 2003 | 2011 |
| Santorelli FM | 16 | 2000 | 2011 |
| Klebe S | 15 | 2004 | 2012 |
| Hedera P | 15 | 1999 | 2011 |
| Nielsen JE | 15 | 1997 | 2011 |
| Hazan J | 15 | 1993 | 2007 |
| Reid E | 14 | 2002 | 2011 |
| Fontaine B | 14 | 1994 | 2010 |
| Dürr A | 14 | 1994 | 2009 |
| Schöls L | 13 | 2002 | 2012 |
| Beetz C | 13 | 2006 | 2010 |
| Klimpe S | 12 | 2002 | 2012 |
| Rouleau GA | 12 | 1989 | 2012 |
| Forlani S | 12 | 2006 | 2011 |
| Pericak-Vance MA | 12 | 1994 | 2011 |
| Proukakis C | 12 | 2002 | 2011 |
| Tessa A | 12 | 2000 | 2011 |
| Warner TT | 12 | 2001 | 2011 |
| Elleuch N | 12 | 2006 | 2010 |
| Patton MA | 12 | 2001 | 2010 |
| Hutchinson M | 12 | 1997 | 2009 |
| Schüle R | 11 | 2006 | 2012 |
| Kawarai T | 11 | 2002 | 2011 |
| Orlacchio A | 11 | 2002 | 2011 |
| Sperfeld AD | 11 | 2004 | 2010 |
| Patel H | 11 | 2001 | 2008 |
| Kassubek J | 10 | 2004 | 2012 |
| Bernardi G | 10 | 2002 | 2011 |
| Boukhris A | 10 | 2008 | 2011 |
| Shen L | 10 | 2004 | 2011 |
| Bruyn RP | 10 | 1990 | 2009 |
| Deufel T | 10 | 2002 | 2009 |
| Rainier S | 10 | 1998 | 2008 |
| Bouslam N | 10 | 2005 | 2007 |
| Kobayashi H | 10 | 1995 | 2003 |
| Bertini E | 9 | 2000 | 2011 |
| Depienne C | 9 | 2006 | 2011 |
| Rugarli EI | 9 | 2002 | 2011 |
| Blackstone C | 8 | 2005 | 2011 |
| De Michele G | 8 | 1998 | 2011 |
| Goizet C | 8 | 2006 | 2011 |
| Tang BS | 8 | 2003 | 2011 |
| Xia K | 8 | 2003 | 2011 |
| Zhao GH | 8 | 2003 | 2011 |
| Marchuk DA | 8 | 2001 | 2010 |
| Tallaksen CM | 8 | 2001 | 2010 |
| Feki I | 7 | 2007 | 2011 |
| Martinuzzi A | 7 | 2003 | 2011 |
| Sauter SM | 7 | 2004 | 2011 |
| Burgunder JM | 7 | 1998 | 2010 |
| Truchetto J | 7 | 2008 | 2010 |
| van de Warrenburg BP | 7 | 2006 | 2010 |
| Klopstock T | 6 | 2006 | 2012 |
| Bassi MT | 6 | 2003 | 2011 |
| Boespflug-Tanguy O | 6 | 2002 | 2011 |
| Braschinsky M | 6 | 2009 | 2011 |
| Gross-Paju K | 6 | 2009 | 2011 |
| Haldre S | 6 | 2009 | 2011 |
| Houlden H | 6 | 1998 | 2011 |
| Jiang H | 6 | 2004 | 2011 |
| Langer T | 6 | 2003 | 2011 |
| Mannan AU | 6 | 2006 | 2011 |
| De Jonghe P | 6 | 1999 | 2010 |
| Filla A | 6 | 1998 | 2010 |
| Lossos A | 6 | 2006 | 2010 |
| Mostacciuolo ML | 6 | 2000 | 2010 |
| Yang Y | 6 | 2000 | 2010 |
| Otto S | 5 | 2006 | 2012 |
| Criscuolo C | 5 | 2004 | 2011 |
| D'Angelo MG | 5 | 2006 | 2011 |
| Denora PS | 5 | 2006 | 2011 |
| Gaudiello F | 5 | 2004 | 2011 |
| Mundwiller E | 5 | 2009 | 2011 |
| Svenstrup K | 5 | 2007 | 2011 |
| Wood NW | 5 | 2001 | 2011 |
| Ludolph AC | 5 | 1998 | 2010 |
| Mhiri C | 5 | 2008 | 2010 |
| Siddique T | 5 | 1994 | 2010 |
| Zatz M | 5 | 2002 | 2010 |
| Ki CS | 4 | 2005 | 2012 |
| Brais B | 3 | 2006 | 2012 |
| Rioux MF | 3 | 2006 | 2012 |
| Dion PA | 2 | 2007 | 2012 |
| Dupré N | 2 | 2007 | 2012 |
| Karle K | 2 | 2009 | 2012 |
| Lee ST | 2 | 2010 | 2012 |
| Lee WY | 2 | 2005 | 2012 |
| Ahn JY | 1 | 2012 | 2012 |
| Caplan JP | 1 | 2012 | 2012 |
| Cho JW | 1 | 2012 | 2012 |
| Kohl Z | 1 | 2012 | 2012 |
| Levert A | 1 | 2012 | 2012 |
| Noreau A | 1 | 2012 | 2012 |
| Osmolak AM | 1 | 2012 | 2012 |
| Ratzka S | 1 | 2012 | 2012 |
| Szuto A | 1 | 2012 | 2012 |
| Thibodeau P | 1 | 2012 | 2012 |
| Wallenberg RB | 1 | 2012 | 2012 |
| Yoon WT | 1 | 2012 | 2012 |
Saturday, 19 May 2012
Another community
In my search for different on-line HSP communities I found "patientslikeme". This site has an HSP community with 56 people with the condition.
Personally, I'm reluctant to join this community as they sell users information in order to make profit, therefore I'll just mention this for information.
http://www.patientslikeme.com/conditions/493-hereditary-spastic-paraplegia
Personally, I'm reluctant to join this community as they sell users information in order to make profit, therefore I'll just mention this for information.
http://www.patientslikeme.com/conditions/493-hereditary-spastic-paraplegia
Sunday, 6 May 2012
Joining Communities
In the last few weeks I've changed my policy slightly - from a passive to an active contributor.
Previously, other than telling my immediate family, I'd been staying silent about my blog. Naturally I'd been keeping my eyes out to see if had been popping up anywhere. And, until a month or two ago it seemed to be 'under the radar' then I spotted it on rarediseasecommunity - now called rareconnect.
So, I joined up with rareconnect, and posted a link to this blog: http://www.rareconnect.org/en/community/hereditary-spastic-paraplegia/article/link-to-my-fsp-hsp-blog
I also joined the hsp support group http://hspgroup.org/, and am starting off letting members know about this blog. With hindsight, I cant find a good reason why I hadn't sign up here earlier, but done now.
I'm not one for 'shouting from the rooftops', so this will be a gradual process.
Sunday, 29 April 2012
Researchers - Initial Numbers
So, Thanks to a post from Rob from EURODIS on Rarediseasecommunity, I have been looking at PubMed, which has a directory of medical publications. On 20th April there were 589 different papers listed for HSP. I'm doing a bit of number crunching on this information. There are two simple sets of numbers - number of papers per year and number of papers per journal which are easy to find out:
Papers per year:
Papers per journal - note that I've yet to decipher the abbreviations:
More details in a later post - the link with all this lovely info is here: http://www.ncbi.nlm.nih.gov/pubmed?term=%22Spastic%20Paraplegia,%20Hereditary%22[Majr]
Papers per year:
| Year | Papers |
|---|---|
| 2012 | 4 |
| 2011 | 35 |
| 2010 | 38 |
| 2009 | 49 |
| 2008 | 45 |
| 2007 | 45 |
| 2006 | 48 |
| 2005 | 28 |
| 2004 | 36 |
| 2003 | 36 |
| 2002 | 30 |
| 2001 | 27 |
| 2000 | 18 |
| 1999 | 25 |
| 1998 | 24 |
| 1997 | 13 |
| 1996 | 4 |
| 1995 | 9 |
| 1994 | 10 |
| 1993 | 16 |
| 1992 | 8 |
| 1991 | 13 |
| 1990 | 18 |
| 1989 | 6 |
| 1988 | 3 |
| 1978 | 1 |
Papers per journal - note that I've yet to decipher the abbreviations:
| Journal | Papers | Most Recent |
|---|---|---|
| Neurology | 48 | 2010 |
| J Neurol Neurosurg Psychiatry | 24 | 2010 |
| J Neurol Sci | 23 | 2011 |
| J Neurol | 22 | 2011 |
| Arch Neurol | 22 | 2009 |
| Neurogenetics | 21 | 2011 |
| Am J Hum Genet | 20 | 2008 |
| Eur J Neurol | 17 | 2012 |
| J Med Genet | 16 | 2009 |
| Ann Neurol | 15 | 2007 |
| Mov Disord | 13 | 2011 |
| Clin Genet | 13 | 2011 |
| Hum Mutat | 12 | 2011 |
| Hum Mol Genet | 12 | 2010 |
| Brain | 10 | 2010 |
| Hum Genet | 10 | 2010 |
| No To Shinkei | 9 | 2003 |
| Acta Neurol Scand | 9 | 2002 |
| Zhonghua Yi Xue Yi Chuan Xue Za Zhi | 8 | 2009 |
| Am J Med Genet | 8 | 2002 |
| Clin Neurol Neurosurg | 6 | 2011 |
| Eur J Hum Genet | 6 | 2009 |
| Nat Genet | 6 | 2007 |
| Neuromuscul Disord | 5 | 2009 |
| Ryoikibetsu Shokogun Shirizu | 5 | 2001 |
| J Child Neurol | 4 | 2010 |
| Chin Med J (Engl) | 4 | 2009 |
| J Cell Biol | 4 | 2009 |
| Neuropediatrics | 4 | 2006 |
| Rinsho Shinkeigaku | 4 | 2001 |
| Dev Med Child Neurol | 4 | 1993 |
| Can J Neurol Sci | 3 | 2012 |
| Neurol Sci | 3 | 2011 |
| Pediatr Neurol | 3 | 2011 |
| Prenat Diagn | 3 | 2010 |
| Brain Dev | 3 | 2010 |
| Arq Neuropsiquiatr | 3 | 2010 |
| J Neurochem | 3 | 2009 |
| Funct Neurol | 3 | 2007 |
| Curr Opin Neurol | 3 | 2007 |
| Muscle Nerve | 3 | 2007 |
| Eur Neurol | 3 | 2007 |
| Neuroradiology | 3 | 2006 |
| Cell | 3 | 2005 |
| Curr Biol | 3 | 2005 |
| Zh Nevropatol Psikhiatr Im S S Korsakova | 3 | 1991 |
| Clin Neurophysiol | 2 | 2011 |
| Acta Neuropathol | 2 | 2011 |
| Genome Res | 2 | 2011 |
| J Clin Neuromuscul Dis | 2 | 2011 |
| BMC Biol | 2 | 2010 |
| J Clin Invest | 2 | 2010 |
| BMC Neurol | 2 | 2010 |
| Am J Med Genet B Neuropsychiatr Genet | 2 | 2009 |
| Arch Phys Med Rehabil | 2 | 2009 |
| Hong Kong Med J | 2 | 2009 |
| J Inherit Metab Dis | 2 | 2008 |
| Lancet Neurol | 2 | 2008 |
| Neurosci Lett | 2 | 2008 |
| J Biol Chem | 2 | 2008 |
| Expert Opin Pharmacother | 2 | 2007 |
| Int J Obstet Anesth | 2 | 2007 |
| Am J Med Genet A | 2 | 2005 |
| Neuropathology | 2 | 2005 |
| Amyotroph Lateral Scler Other Motor Neuron Disord | 2 | 2005 |
| Neuropathol Appl Neurobiol | 2 | 2004 |
| Nervenarzt | 2 | 2003 |
| Genomics | 2 | 2003 |
| Semin Neurol | 2 | 1999 |
| Nat Med | 2 | 1998 |
| Pediatr Neurosurg | 2 | 1995 |
| Genet Couns | 2 | 1994 |
| Ital J Neurol Sci | 2 | 1993 |
| Eur Arch Psychiatry Neurol Sci | 2 | 1990 |
| Psychosomatics | 1 | 2012 |
| Spinal Cord | 1 | 2011 |
| Eur J Paediatr Neurol | 1 | 2011 |
| Curr Mol Med | 1 | 2011 |
| Eur J Med Genet | 1 | 2011 |
| Orphanet J Rare Dis | 1 | 2011 |
| Nat Rev Neurosci | 1 | 2011 |
| PLoS Genet | 1 | 2011 |
| Genet Med | 1 | 2011 |
| Gait Posture | 1 | 2011 |
| Amyotroph Lateral Scler | 1 | 2011 |
| Rev Esp Anestesiol Reanim | 1 | 2011 |
| Mol Cell Neurosci | 1 | 2011 |
| Neurologist | 1 | 2011 |
| Mitochondrion | 1 | 2011 |
| Zh Nevrol Psikhiatr Im S S Korsakova | 1 | 2010 |
| No To Hattatsu | 1 | 2010 |
| PLoS Biol | 1 | 2010 |
| Toxicol Lett | 1 | 2010 |
| Dis Model Mech | 1 | 2010 |
| J Lipid Res | 1 | 2010 |
| Ann Clin Lab Sci | 1 | 2010 |
| Hum Brain Mapp | 1 | 2010 |
| Neuroepidemiology | 1 | 2009 |
| Rom J Morphol Embryol | 1 | 2009 |
| Clin Rehabil | 1 | 2009 |
| AJNR Am J Neuroradiol | 1 | 2009 |
| Ann Anat | 1 | 2009 |
| Adv Exp Med Biol | 1 | 2009 |
| Synapse | 1 | 2009 |
| Nature | 1 | 2008 |
| Acta Neurol Scand Suppl | 1 | 2008 |
| SEB Exp Biol Ser | 1 | 2008 |
| BMC Med Genet | 1 | 2008 |
| J Neurosci | 1 | 2008 |
| J Neurogenet | 1 | 2008 |
| J Intellect Disabil | 1 | 2008 |
| Neuroscience | 1 | 2008 |
| Med Arh | 1 | 2007 |
| Mol Cell Biol | 1 | 2007 |
| Mol Neurobiol | 1 | 2007 |
| Brain Res Bull | 1 | 2007 |
| Pediatr Radiol | 1 | 2007 |
| Tidsskr Nor Laegeforen | 1 | 2007 |
| Curr Neurol Neurosci Rep | 1 | 2006 |
| Anesth Analg | 1 | 2006 |
| J Hum Genet | 1 | 2006 |
| Trends Mol Med | 1 | 2006 |
| Ren Fail | 1 | 2006 |
| Panminerva Med | 1 | 2006 |
| Proc Natl Acad Sci U S A | 1 | 2006 |
| Pharmacol Ther | 1 | 2006 |
| Cell Mol Neurobiol | 1 | 2005 |
| Ceylon Med J | 1 | 2005 |
| Biochem Biophys Res Commun | 1 | 2005 |
| J Clin Neurosci | 1 | 2004 |
| Ned Tijdschr Geneeskd | 1 | 2004 |
| Parkinsonism Relat Disord | 1 | 2004 |
| Neuroreport | 1 | 2003 |
| IUBMB Life | 1 | 2003 |
| Exp Neurol | 1 | 2003 |
| Nihon Rinsho | 1 | 2002 |
| Masui | 1 | 2002 |
| Int Rev Neurobiol | 1 | 2002 |
| Neurol Clin | 1 | 2002 |
| Curr Opin Genet Dev | 1 | 2001 |
| Rev Prat | 1 | 2001 |
| Pharmacogenomics | 1 | 2001 |
| Retina | 1 | 2000 |
| Rev Neurol (Paris) | 1 | 2000 |
| Neurophysiol Clin | 1 | 2000 |
| Can J Anaesth | 1 | 1999 |
| Biochim Biophys Acta | 1 | 1999 |
| Electromyogr Clin Neurophysiol | 1 | 1999 |
| Physiother Res Int | 1 | 1999 |
| Neurochirurgie | 1 | 1998 |
| Zhonghua Min Guo Xiao Er Ke Yi Xue Hui Za Zhi | 1 | 1998 |
| Schweiz Med Wochenschr | 1 | 1998 |
| Hum Hered | 1 | 1998 |
| Am J Phys Med Rehabil | 1 | 1998 |
| J Clin Epidemiol | 1 | 1997 |
| Epilepsia | 1 | 1997 |
| Acta Paediatr | 1 | 1996 |
| Acta Neurochir Suppl | 1 | 1995 |
| Brain Pathol | 1 | 1995 |
| Aust N Z J Psychiatry | 1 | 1995 |
| Vojnosanit Pregl | 1 | 1993 |
| Electroencephalogr Clin Neurophysiol | 1 | 1993 |
| Paraplegia | 1 | 1993 |
| J Neurosurg Sci | 1 | 1993 |
| Neurourol Urodyn | 1 | 1993 |
| Aust Vet J | 1 | 1993 |
| Orthop Rev | 1 | 1992 |
| Minerva Med | 1 | 1992 |
| Clin Neuropharmacol | 1 | 1991 |
| Clin Exp Neurol | 1 | 1991 |
| Fortschr Neurol Psychiatr | 1 | 1991 |
| J Assoc Physicians India | 1 | 1990 |
| Am J Hematol | 1 | 1990 |
| N Engl J Med | 1 | 1990 |
| Prog Clin Biol Res | 1 | 1989 |
| J Med Assoc Thai | 1 | 1989 |
| Medicina (B Aires) | 1 | 1988 |
| Ann Pediatr (Paris) | 1 | 1978 |
More details in a later post - the link with all this lovely info is here: http://www.ncbi.nlm.nih.gov/pubmed?term=%22Spastic%20Paraplegia,%20Hereditary%22[Majr]
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