MS Society and CCSVI

What can MS Society Members Do In Canada?

Take action and have your voice heard.  Find your local member of parliament below and let them know that you want more research funding for CCSVI.

Members of Parliament (Current)

307 Members of Parliament To sort, click on column header, re-click to change order

Member of Parliament    Constituency    Province/Territory    Caucus    Abbott, Jim (Hon.) Kootenay—Columbia British Columbia Conservative Ablonczy, Diane (Hon.) Calgary—Nose Hill Alberta Conservative Aglukkaq, Leona (Hon.) Nunavut Nunavut Conservative Albrecht, Harold Kitchener—Conestoga Ontario Conservative Allen, Malcolm Welland Ontario NDP Allen, Mike Tobique—Mactaquac New Brunswick Conservative Allison, Dean Niagara West—Glanbrook Ontario Conservative Ambrose, Rona (Hon.) Edmonton—Spruce Grove Alberta Conservative Anders, Rob Calgary West Alberta Conservative Anderson, David Cypress Hills—Grasslands Saskatchewan Conservative André, Guy Berthier—Maskinongé Québec Bloc Québécois Andrews, Scott Avalon Newfoundland and Labrador Liberal Angus, Charlie Timmins—James Bay Ontario NDP Armstrong, Scott Cumberland—Colchester—Musquodoboit Valley Nova Scotia Conservative Arthur, André Portneuf—Jacques-Cartier Québec Independent Ashfield, Keith (Hon.) Fredericton New Brunswick Conservative Ashton, Niki Churchill Manitoba NDP Asselin, Gérard Manicouagan Québec Bloc Québécois Atamanenko, Alex British Columbia Southern Interior British Columbia NDP Bachand, Claude Saint-Jean Québec Bloc Québécois Bagnell, Larry (Hon.) Yukon Yukon Liberal Bains, Navdeep (Hon.) Mississauga—Brampton South Ontario Liberal Baird, John (Hon.) Ottawa West—Nepean Ontario Conservative Beaudin, Josée Saint-Lambert Québec Bloc Québécois Bélanger, Mauril (Hon.) Ottawa—Vanier Ontario Liberal Bellavance, André Richmond—Arthabaska Québec Bloc Québécois Bennett, Carolyn (Hon.) St. Paul’s Ontario Liberal Benoit, Leon Vegreville—Wainwright Alberta Conservative Bernier, Maxime (Hon.) Beauce Québec Conservative Bevilacqua, Maurizio (Hon.) Vaughan Ontario Liberal Bevington, Dennis Western Arctic Northwest Territories NDP Bezan, James Selkirk—Interlake Manitoba Conservative Bigras, Bernard Rosemont—La Petite-Patrie Québec Bloc Québécois Blackburn, Jean-Pierre (Hon.) Jonquière—Alma Québec Conservative Blais, Raynald Gaspésie—Îles-de-la-Madeleine Québec Bloc Québécois Blaney, Steven Lévis—Bellechasse Québec Conservative Block, Kelly Saskatoon—Rosetown—Biggar Saskatchewan Conservative Bonsant, France Compton—Stanstead Québec Bloc Québécois Bouchard, Robert Chicoutimi—Le Fjord Québec Bloc Québécois Boucher, Sylvie Beauport—Limoilou Québec Conservative Boughen, Ray Palliser Saskatchewan Conservative Bourgeois, Diane Terrebonne—Blainville Québec Bloc Québécois Braid, Peter Kitchener—Waterloo Ontario Conservative Breitkreuz, Garry Yorkton—Melville Saskatchewan Conservative Brison, Scott (Hon.) Kings—Hants Nova Scotia Liberal Brown, Gordon Leeds—Grenville Ontario Conservative Brown, Lois Newmarket—Aurora Ontario Conservative Brown, Patrick Barrie Ontario Conservative Bruinooge, Rod Winnipeg South Manitoba Conservative Brunelle, Paule Trois-Rivières Québec Bloc Québécois Byrne, Gerry (Hon.) Humber—St. Barbe—Baie Verte Newfoundland and Labrador Liberal Cadman, Dona Surrey North British Columbia Conservative Calandra, Paul Oak Ridges—Markham Ontario Conservative Calkins, Blaine Wetaskiwin Alberta Conservative Cannan, Ron Kelowna—Lake Country British Columbia Conservative Cannis, John Scarborough Centre Ontario Liberal Cannon, Lawrence (Hon.) Pontiac Québec Conservative Cardin, Serge Sherbrooke Québec Bloc Québécois Carrie, Colin Oshawa Ontario Conservative Carrier, Robert Alfred-Pellan Québec Bloc Québécois Casson, Rick Lethbridge Alberta Conservative Charlton, Chris Hamilton Mountain Ontario NDP Chong, Michael (Hon.) Wellington—Halton Hills Ontario Conservative Chow, Olivia Trinity—Spadina Ontario NDP Christopherson, David Hamilton Centre Ontario NDP Clarke, Rob Desnethé—Missinippi—Churchill River Saskatchewan Conservative Clement, Tony (Hon.) Parry Sound—Muskoka Ontario Conservative Coady, Siobhan St. John’s South—Mount Pearl Newfoundland and Labrador Liberal Coderre, Denis (Hon.) Bourassa Québec Liberal Comartin, Joe Windsor—Tecumseh Ontario NDP Cotler, Irwin (Hon.) Mount Royal Québec Liberal Crombie, Bonnie Mississauga—Streetsville Ontario Liberal Crowder, Jean Nanaimo—Cowichan British Columbia NDP Cullen, Nathan Skeena—Bulkley Valley British Columbia NDP Cummins, John Delta—Richmond East British Columbia Conservative Cuzner, Rodger Cape Breton—Canso Nova Scotia Liberal D’Amours, Jean-Claude Madawaska—Restigouche New Brunswick Liberal Davidson, Patricia Sarnia—Lambton Ontario Conservative Davies, Don Vancouver Kingsway British Columbia NDP Davies, Libby Vancouver East British Columbia NDP Day, Stockwell (Hon.) Okanagan—Coquihalla British Columbia Conservative DeBellefeuille, Claude Beauharnois—Salaberry Québec Bloc Québécois Dechert, Bob Mississauga—Erindale Ontario Conservative Del Mastro, Dean Peterborough Ontario Conservative Demers, Nicole Laval Québec Bloc Québécois Deschamps, Johanne Laurentides—Labelle Québec Bloc Québécois Desnoyers, Luc Rivière-des-Mille-Îles Québec Bloc Québécois Devolin, Barry Haliburton—Kawartha Lakes—Brock Ontario Conservative Dewar, Paul Ottawa Centre Ontario NDP Dhaliwal, Sukh Newton—North Delta British Columbia Liberal Dhalla, Ruby Brampton—Springdale Ontario Liberal Dion, Stéphane (Hon.) Saint-Laurent—Cartierville Québec Liberal Donnelly, Fin New Westminster—Coquitlam British Columbia NDP Dorion, Jean Longueuil—Pierre-Boucher Québec Bloc Québécois Dosanjh, Ujjal (Hon.) Vancouver South British Columbia Liberal Dreeshen, Earl Red Deer Alberta Conservative Dryden, Ken (Hon.) York Centre Ontario Liberal Duceppe, Gilles Laurier—Sainte-Marie Québec Bloc Québécois Dufour, Nicolas Repentigny Québec Bloc Québécois Duncan, John Vancouver Island North British Columbia Conservative Duncan, Kirsty Etobicoke North Ontario Liberal Duncan, Linda Edmonton—Strathcona Alberta NDP Dykstra, Rick St. Catharines Ontario Conservative Easter, Wayne (Hon.) Malpeque Prince Edward Island Liberal Eyking, Mark (Hon.) Sydney—Victoria Nova Scotia Liberal Faille, Meili Vaudreuil-Soulanges Québec Bloc Québécois Fast, Ed Abbotsford British Columbia Conservative Finley, Diane (Hon.) Haldimand—Norfolk Ontario Conservative Flaherty, Jim (Hon.) Whitby—Oshawa Ontario Conservative Fletcher, Steven (Hon.) Charleswood—St. James—Assiniboia Manitoba Conservative Folco, Raymonde Laval—Les Îles Québec Liberal Foote, Judy Random—Burin—St. George’s Newfoundland and Labrador Liberal Freeman, Carole Châteauguay—Saint-Constant Québec Bloc Québécois Fry, Hedy (Hon.) Vancouver Centre British Columbia Liberal Gagnon, Christiane Québec Québec Bloc Québécois Galipeau, Royal Ottawa—Orléans Ontario Conservative Gallant, Cheryl Renfrew—Nipissing—Pembroke Ontario Conservative Garneau, Marc Westmount—Ville-Marie Québec Liberal Gaudet, Roger Montcalm Québec Bloc Québécois Généreux, Bernard Montmagny—L’Islet—Kamouraska—Rivière-du-Loup Québec Conservative Glover, Shelly Saint Boniface Manitoba Conservative Godin, Yvon Acadie—Bathurst New Brunswick NDP Goldring, Peter Edmonton East Alberta Conservative Goodale, Ralph (Hon.) Wascana Saskatchewan Liberal Goodyear, Gary (Hon.) Cambridge Ontario Conservative Gourde, Jacques Lotbinière—Chutes-de-la-Chaudière Québec Conservative Gravelle, Claude Nickel Belt Ontario NDP Grewal, Nina Fleetwood—Port Kells British Columbia Conservative Guarnieri, Albina (Hon.) Mississauga East—Cooksville Ontario Liberal Guay, Monique Rivière-du-Nord Québec Bloc Québécois Guergis, Helena (Hon.) Simcoe—Grey Ontario Independent Conservative Guimond, Claude Rimouski-Neigette—Témiscouata—Les Basques Québec Bloc Québécois Guimond, Michel Montmorency—Charlevoix—Haute-Côte-Nord Québec Bloc Québécois Hall Findlay, Martha Willowdale Ontario Liberal Harper, Stephen (Right Hon.) Calgary Southwest Alberta Conservative Harris, Jack St. John’s East Newfoundland and Labrador NDP Harris, Richard M. Cariboo—Prince George British Columbia Conservative Hawn, Laurie Edmonton Centre Alberta Conservative Hiebert, Russ South Surrey—White Rock—Cloverdale British Columbia Conservative Hill, Jay (Hon.) Prince George—Peace River British Columbia Conservative Hoback, Randy Prince Albert Saskatchewan Conservative Hoeppner, Candice Portage—Lisgar Manitoba Conservative Holder, Ed London West Ontario Conservative Holland, Mark Ajax—Pickering Ontario Liberal Hughes, Carol Algoma—Manitoulin—Kapuskasing Ontario NDP Hyer, Bruce Thunder Bay—Superior North Ontario NDP Ignatieff, Michael (Hon.) Etobicoke—Lakeshore Ontario Liberal Jean, Brian Fort McMurray—Athabasca Alberta Conservative Jennings, Marlene (Hon.) Notre-Dame-de-Grâce—Lachine Québec Liberal Julian, Peter Burnaby—New Westminster British Columbia NDP Kamp, Randy Pitt Meadows—Maple Ridge—Mission British Columbia Conservative Kania, Andrew Brampton West Ontario Liberal Karygiannis, Jim (Hon.) Scarborough—Agincourt Ontario Liberal Keddy, Gerald South Shore—St. Margaret’s Nova Scotia Conservative Kennedy, Gerard Parkdale—High Park Ontario Liberal Kenney, Jason (Hon.) Calgary Southeast Alberta Conservative Kent, Peter (Hon.) Thornhill Ontario Conservative Kerr, Greg West Nova Nova Scotia Conservative Komarnicki, Ed Souris—Moose Mountain Saskatchewan Conservative Kramp, Daryl Prince Edward—Hastings Ontario Conservative Laforest, Jean-Yves Saint-Maurice—Champlain Québec Bloc Québécois Laframboise, Mario Argenteuil—Papineau—Mirabel Québec Bloc Québécois Lake, Mike Edmonton—Mill Woods—Beaumont Alberta Conservative Lalonde, Francine La Pointe-de-l’Île Québec Bloc Québécois Lauzon, Guy Stormont—Dundas—South Glengarry Ontario Conservative Lavallée, Carole Saint-Bruno—Saint-Hubert Québec Bloc Québécois Layton, Jack (Hon.) Toronto—Danforth Ontario NDP Lebel, Denis (Hon.) Roberval—Lac-Saint-Jean Québec Conservative LeBlanc, Dominic (Hon.) Beauséjour New Brunswick Liberal Lee, Derek Scarborough—Rouge River Ontario Liberal Lemay, Marc Abitibi—Témiscamingue Québec Bloc Québécois Lemieux, Pierre Glengarry—Prescott—Russell Ontario Conservative Leslie, Megan Halifax Nova Scotia NDP Lessard, Yves Chambly—Borduas Québec Bloc Québécois Lévesque, Yvon Abitibi—Baie-James—Nunavik—Eeyou Québec Bloc Québécois Lobb, Ben Huron—Bruce Ontario Conservative Lukiwski, Tom Regina—Lumsden—Lake Centre Saskatchewan Conservative Lunn, Gary (Hon.) Saanich—Gulf Islands British Columbia Conservative Lunney, James Nanaimo—Alberni British Columbia Conservative MacAulay, Lawrence (Hon.) Cardigan Prince Edward Island Liberal MacKay, Peter Gordon (Hon.) Central Nova Nova Scotia Conservative MacKenzie, Dave Oxford Ontario Conservative Malhi, Gurbax (Hon.) Bramalea—Gore—Malton Ontario Liberal Malo, Luc Verchères—Les Patriotes Québec Bloc Québécois Maloway, Jim Elmwood—Transcona Manitoba NDP Mark, Inky Dauphin—Swan River—Marquette Manitoba Conservative Marston, Wayne Hamilton East—Stoney Creek Ontario NDP Martin, Keith (Hon.) Esquimalt—Juan de Fuca British Columbia Liberal Martin, Pat Winnipeg Centre Manitoba NDP Martin, Tony Sault Ste. Marie Ontario NDP Masse, Brian Windsor West Ontario NDP Mathyssen, Irene London—Fanshawe Ontario NDP Mayes, Colin Okanagan—Shuswap British Columbia Conservative McCallum, John (Hon.) Markham—Unionville Ontario Liberal McColeman, Phil Brant Ontario Conservative McGuinty, David Ottawa South Ontario Liberal McKay, John (Hon.) Scarborough—Guildwood Ontario Liberal McLeod, Cathy Kamloops—Thompson—Cariboo British Columbia Conservative McTeague, Dan (Hon.) Pickering—Scarborough East Ontario Liberal Ménard, Serge Marc-Aurèle-Fortin Québec Bloc Québécois Mendes, Alexandra Brossard—La Prairie Québec Liberal Menzies, Ted Macleod Alberta Conservative Merrifield, Rob (Hon.) Yellowhead Alberta Conservative Miller, Larry Bruce—Grey—Owen Sound Ontario Conservative Milliken, Peter (Hon.) Kingston and the Islands Ontario Liberal Minna, Maria (Hon.) Beaches—East York Ontario Liberal Moore, James (Hon.) Port Moody—Westwood—Port Coquitlam British Columbia Conservative Moore, Rob (Hon.) Fundy Royal New Brunswick Conservative Mourani, Maria Ahuntsic Québec Bloc Québécois Mulcair, Thomas Outremont Québec NDP Murphy, Brian Moncton—Riverview—Dieppe New Brunswick Liberal Murphy, Shawn (Hon.) Charlottetown Prince Edward Island Liberal Murray, Joyce Vancouver Quadra British Columbia Liberal Nadeau, Richard Gatineau Québec Bloc Québécois Neville, Anita (Hon.) Winnipeg South Centre Manitoba Liberal Nicholson, Rob (Hon.) Niagara Falls Ontario Conservative Norlock, Rick Northumberland—Quinte West Ontario Conservative Obhrai, Deepak Calgary East Alberta Conservative O’Connor, Gordon (Hon.) Carleton—Mississippi Mills Ontario Conservative Oda, Bev (Hon.) Durham Ontario Conservative Oliphant, Robert Don Valley West Ontario Liberal O’Neill-Gordon, Tilly Miramichi New Brunswick Conservative Ouellet, Christian Brome—Missisquoi Québec Bloc Québécois Pacetti, Massimo Saint-Léonard—Saint-Michel Québec Liberal Paillé, Daniel Hochelaga Québec Bloc Québécois Paillé, Pascal-Pierre Louis-Hébert Québec Bloc Québécois Paquette, Pierre Joliette Québec Bloc Québécois Paradis, Christian (Hon.) Mégantic—L’Érable Québec Conservative Patry, Bernard Pierrefonds—Dollard Québec Liberal Payne, LaVar Medicine Hat Alberta Conservative Pearson, Glen London North Centre Ontario Liberal Petit, Daniel Charlesbourg—Haute-Saint-Charles Québec Conservative Plamondon, Louis Bas-Richelieu—Nicolet—Bécancour Québec Bloc Québécois Poilievre, Pierre Nepean—Carleton Ontario Conservative Pomerleau, Roger Drummond Québec Bloc Québécois Prentice, Jim (Hon.) Calgary Centre-North Alberta Conservative Preston, Joe Elgin—Middlesex—London Ontario Conservative Proulx, Marcel Hull—Aylmer Québec Liberal Rae, Bob (Hon.) Toronto Centre Ontario Liberal Rafferty, John Thunder Bay—Rainy River Ontario NDP Raitt, Lisa (Hon.) Halton Ontario Conservative Rajotte, James Edmonton—Leduc Alberta Conservative Ratansi, Yasmin Don Valley East Ontario Liberal Rathgeber, Brent Edmonton—St. Albert Alberta Conservative Regan, Geoff (Hon.) Halifax West Nova Scotia Liberal Reid, Scott Lanark—Frontenac—Lennox and Addington Ontario Conservative Richards, Blake Wild Rose Alberta Conservative Richardson, Lee Calgary Centre Alberta Conservative Rickford, Greg Kenora Ontario Conservative Ritz, Gerry (Hon.) Battlefords—Lloydminster Saskatchewan Conservative Rodriguez, Pablo Honoré-Mercier Québec Liberal Rota, Anthony Nipissing—Timiskaming Ontario Liberal Roy, Jean-Yves Haute-Gaspésie—La Mitis—Matane—Matapédia Québec Bloc Québécois Russell, Todd Labrador Newfoundland and Labrador Liberal Savage, Michael Dartmouth—Cole Harbour Nova Scotia Liberal Savoie, Denise Victoria British Columbia NDP Saxton, Andrew North Vancouver British Columbia Conservative Scarpaleggia, Francis Lac-Saint-Louis Québec Liberal Scheer, Andrew Regina—Qu’Appelle Saskatchewan Conservative Schellenberger, Gary Perth—Wellington Ontario Conservative Sgro, Judy (Hon.) York West Ontario Liberal Shea, Gail (Hon.) Egmont Prince Edward Island Conservative Shipley, Bev Lambton—Kent—Middlesex Ontario Conservative Shory, Devinder Calgary Northeast Alberta Conservative Siksay, Bill Burnaby—Douglas British Columbia NDP Silva, Mario Davenport Ontario Liberal Simms, Scott Bonavista—Gander—Grand Falls—Windsor Newfoundland and Labrador Liberal Simson, Michelle Scarborough Southwest Ontario Liberal Smith, Joy Kildonan—St. Paul Manitoba Conservative Sorenson, Kevin Crowfoot Alberta Conservative Stanton, Bruce Simcoe North Ontario Conservative St-Cyr, Thierry Jeanne-Le Ber Québec Bloc Québécois Stoffer, Peter Sackville—Eastern Shore Nova Scotia NDP Storseth, Brian Westlock—St. Paul Alberta Conservative Strahl, Chuck (Hon.) Chilliwack—Fraser Canyon British Columbia Conservative Sweet, David Ancaster—Dundas—Flamborough—Westdale Ontario Conservative Szabo, Paul Mississauga South Ontario Liberal Thi Lac, Ève-Mary Thaï Saint-Hyacinthe—Bagot Québec Bloc Québécois Thibeault, Glenn Sudbury Ontario NDP Thompson, Greg (Hon.) New Brunswick Southwest New Brunswick Conservative Tilson, David Dufferin—Caledon Ontario Conservative Toews, Vic (Hon.) Provencher Manitoba Conservative Tonks, Alan York South—Weston Ontario Liberal Trost, Brad Saskatoon—Humboldt Saskatchewan Conservative Trudeau, Justin Papineau Québec Liberal Tweed, Merv Brandon—Souris Manitoba Conservative Uppal, Tim Edmonton—Sherwood Park Alberta Conservative Valeriote, Francis Guelph Ontario Liberal Van Kesteren, Dave Chatham-Kent—Essex Ontario Conservative Van Loan, Peter (Hon.) York—Simcoe Ontario Conservative Vellacott, Maurice Saskatoon—Wanuskewin Saskatchewan Conservative Verner, Josée (Hon.) Louis-Saint-Laurent Québec Conservative Vincent, Robert Shefford Québec Bloc Québécois Volpe, Joseph (Hon.) Eglinton—Lawrence Ontario Liberal Wallace, Mike Burlington Ontario Conservative Warawa, Mark Langley British Columbia Conservative Warkentin, Chris Peace River Alberta Conservative Watson, Jeff Essex Ontario Conservative Weston, John West Vancouver—Sunshine Coast—Sea to Sky Country British Columbia Conservative Weston, Rodney Saint John New Brunswick Conservative Wilfert, Bryon (Hon.) Richmond Hill Ontario Liberal Wong, Alice Richmond British Columbia Conservative Woodworth, Stephen Kitchener Centre Ontario Conservative Wrzesnewskyj, Borys Etobicoke Centre Ontario Liberal Yelich, Lynne (Hon.) Blackstrap Saskatchewan Conservative Young, Terence Oakville Ontario Conservative Zarac, Lise LaSalle—Émard Québec Liberal

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The MS Society of Canada’s Plan for CCSVI

Take Action To Fight Against MS

Every month, we try to take time in the first couple of weeks with the intent to allow for a bit of reflection and self-analysis about the current state or your Multiple Sclerosis.

Feel free to leave a comment about your current successes and/or difficulties.  Ask questions of one another, or propose a topic for future blog discussions.  This monthly conversation has been going on for over 4 years now, and I don’t see a reason to stop now!

As for my MS today?

You may have noted a lack of posts this week until today.  I was working in Portland, OR from last Sunday and, quite frankly between the travel and the work I found my limits… about 100yds behind me!

My next 6 weeks have me traveling a considerable amount (7 trips, 5 states and 4 time zones) so I’m planning on July as my recovery month!

Looking forward to hearing from all of you, as I make this a short post to conserve what energy I have left at this point.

Wishing you and your family the best of health.

Cheers

Trevis

Some, however, may need/desire a real, face-to-face group to attend while others avoid (sometimes at doctor’s urging) such groups.

As many of you know, I co-lead such a group for men living with MS in the Seattle area.  We call it “Poker Night” so that no one has to say they attend a support group.  We even played poker…once!

The range of ability vs. disability is pretty broad in our group.  We all know the “invisible” symptoms; some of the guys are in really good shape while others are further progressed.

For those for whom MS has “significantly” progressed the lack of other social outlets can make attending such meetings even more important.  We once had a gentleman attend for a while who, while quite very young, was living in an assisted living facility due to a combination of his symptoms and his family’s inability to care for him properly (but was able to afford excellent care).

When this lad was no longer able to use local para-transit to attend, we missed him.

My memory of him came to the fore a couple of months ago when I heard of a large group of people living with MS in a long-term/rehabilitation home just a mile or so from my home.  These folks are a full generation younger than the average residents of said facility and it is a rather large group (7) for such a home.

It had always bothered me that we were no longer to be a place for our guy to attend.  What, I wondered, if we were able to bring a meeting to this community?

Yesterday, we had our first get together.  I wouldn’t call it a self-help group yet.  It was more of an informational gathering to assess the need/desire of the group. I was a little nervous heading into the meeting.  I’ve done a fair amount of work with kitchen staffs in this type of operation; they’re not my favorite places…

Our group, as you might expect, was all confined to motorized wheelchair apparatus.  I guess that the medical term for their conditions would be considered “advanced”.  The age range for our group is 40’s to 70’s (while the average age of the residents in mid-80’s).  Difficulty with speech was a near universal symptom for our group as well; making communication a bit of a challenge.

We, together, decided that having a regularly meeting support group was a very good idea!  This is an underserved community and, quite frankly, I felt the need to “pay it forward”.

None of us know what tomorrow will bring when it comes to MS, let alone looking down the road a decade or so.  We hope.  We work on what we can.  We do our best to stave-off the scariest bits of a future with MS.

But still, none of us knows…

I don’t write about this group looking for some kind of praise for the doing of it!  I write to tell you about it to raise awareness for this group of people and others in like situations. 

Far too many people in the prime years of their lives are relocated to nursing homes and rehab facilities where they are (by FAR) the youngest residents.  It wouldn’t be going very far to say that I fear such a life (as my MS has been very aggressive in the past).  I think it’s time to address this unacceptable situation.

What should we do?  We have a large (and growing) voice within the MS community.  Let’s use it to address the issue and try to work out some answers.

Your thoughts, as always, will help drive this discussion.

Wishing you and your family the best of health.

Cheers

Trevis

I mentioned (or “teased” as they say in the broadcast business) the idea of modifications we may need to make to our homes in my recent post about a fall and have moved forward with plans to install a second handrail on the steps to our home office.

As we look to an eventual move back to Ireland, there are many considerations to keep in mind when buying a new home. Most of us won’t go as far (unless it’s mandatory) as moving out of our homes because of our MS.  Many of us, however, have considered the need to make our current residences more accessible.

The thought of a wheelchair ramp in the front garden may be far beyond what some of us are willing to think about at this time; even little things like removing clutter can make living our lives with MS a quite a bit easier!

I’ve, for example, always found hardwood floors preferable to carpeting.  When I go to a friend’s home who has carpet, I now know that wall-to-wall is a tripping hazard for me.  I don’t have to worry about things placed too high or too low in my kitchen (now), but it’s something I’ve thought about.

There are many resources for assistance (planning and financial) in the endeavor of making our homes not only more convenient, but also safer.  I’ve even attended a workshop for the elderly looking at making adjustments to their homes, for ideas.

Most days it’s just a cane for me; some a walker.  The difference between using those two devices in my home really brings to the fore how much modification I’d have to make were the latter become the norm.

I don’t bring up this topic for the purpose of stirring panic or bringing gloom.  I’ve always thought that a bit of proactive thinking beats thoughtless reactive actions any day!

So, have you made modifications to your home due to your MS?  Have you thought about it?  Does it scare you?  If you could change one thing today; what would it be?

Wishing you and your family the best of health.

Cheers

Trevis

It is now, as I write this post, 5:30 a.m. local time and I’ve been up for nigh 2 hours already.  I was using the wonderful world of the Internet to link into a social media meeting in Switzerland (not travel accepted, no “secret” information exchanged, no harm, no foul);  I said my piece and relayed your comments and half an hour later – I’m ready to go back to sleep!

The topic of social media has, obviously, been on my mind for some time now and your comments have helped, but have also left me wondering about the medium…

Technically, Life With MS comments are “screened”, as we try to weed out spam and personal attacks.  “Un-screened” social media is something like Facebook; a place where anyone can post anything as long as you’re a “friend”.

This opens an organization, company or group up to all manners of comment.  The whole CCSVI issue, for example, has made quite a mess for several MS organizations on Facebook.

We’ve always strived to make sure that, even though we are screened, that you feel like you can say (nearly) anything here as long as you are respectful of one another and of the group.  To my knowledge, we’ve never blocked anyone from making a legitimate non-spam comment (and some have gone right up to that “line”, trust me!)

I really don’t think that social media is someplace I’d like to see pharmaceutical companies, MS societies or patient advocacy organizations.

The very volume of attention that must be paid to keeping track of comments and banter and all the rest is, in my opinion, time I’d rather have spent on the work these organizations are supposed to be doing.

It may sound odd, when we think of it, that a blogger is questioning the usefulness of social media.  I guess it’s because I don’t really think of this blog the way I do most of those other sites.

This blog is our place.  It’s a welcoming place, I hope; one where new members can jump in, mid-stream, and take what they like and leave what they please.  But I don’t think of Life With MS Blog as “social”.

I think of it as I would an old fashioned group of people that might have met at a library a few decades ago; all looking for information in the MS section. We share, we inform, we suggest and (yes) we do socialize…but it’s not like we’re updating “status” we’re sharing hard-fought life skills; lessons we hope others won’t have to learn for themselves.

I’m rambling and I’ll chalk it up to the fact that I’m now very tired.  I’d like to get your opinion about social media and this blog.  Do you see a difference (or similarity) in the two formats?  Do you want to see a difference?  What are your opinions of MS organizations’ and pharma’s involvement in social media (not here, I think we’ve had that chat…)

Wishing you and your family the best of health.

Cheers

Trevis