Columns Fall Down, Get Up Again- a Column by John Connor Wrap Up Warm: It’s Colder than Mars! Wrap Up Warm: It’s Colder than Mars! by John Connor | February 8, 2019 Share this article: Share article via email Copy article link I'm too disabled for wrap! (Photo by John Connor) OK, I’ve used a typical tabloid headline to draw you into a column about dealing with lymphedema. Well, the topic is not exactly sexy! Though my calves are now extremely toasty due to being effectively embalmed. Lymphedema has been plaguing me for years now. There seems to be a possible link between the condition and multiple sclerosis (MS). My first column about my experience with it elicited 58 responses, more than any other I’ve written. Finally, after persistent hassling, I managed to get myself seen at a lymphedema clinic, one of only three in the U.K., despite the Lymphoedema Support Network’s estimate that there are 240,000 of us suffering from the condition here. To save you from plowing through previous columns, I was informed by my lymphedema specialist — sotto voce — that they think MS is connected to the condition. As yet this is unproven, but research is ongoing into this possible link. I mentioned this to my neurologist last week, and he immediately replied that there was no proof. Don’t shoot me; I’m only the interdisciplinary messenger. Lack of movement exacerbates the build-up of lymph fluid. Yet I notice my feet begin to swell despite walking, swimming, and zooming about playing wheelchair tennis. When my activity was severely curtailed by a relapse last February, the lower halves of my legs already resembled those of the Stay Puft Marshmallow Man in the “Ghostbusters” movies. Join our forums and be part of the Multiple Sclerosis News Today Community! So another layer, fittingly, of rigmarole has been added to my post-shower routine. It can take me an hour to get my compression stockings on; that’s after liberal quantities of athlete’s foot cream and various lotions are applied. I never thought that I’d have to adhere to the strict foot discipline of a First World War soldier — the small battles often need to be won before anything else. Then over the top goes — and this is a bit of a mouthful — multi-layer lymphedema bandaging, or MLLB for short. It took me a few days to get the hang of it; get the right bandages on the right leg, rather than the left. I also have had lymphatic massage, though at my initial assessment the doctors weren’t overly keen on its effects. My legs before treatment. And after. (Photos by John Connor) This seems to be the best treatment option, and so far it is highly effective. After a few days of the wrapping routine, the appearance of my left foot and leg were practically normal. For the film buffs among you, I won’t attempt to paint with it. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author John Connor In the ‘80s, John Connor created the first regular column about the burgeoning London stand-up scene. In 1990 he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge (It was destroyed in 2020!). In 2009 John was diagnosed with relapsing-remitting MS, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with MS. Tags lymphedema Comments Teri Alicea Espinoza I know this has nothing to due to the page above.but I have had m.s for over 6yrs and if anyone has any help on what im about to talk about.recently im finding it harder and harder to keep my head up without it dropping especially when I wake up.its very painful.I cant find anything on. It that reference with m.s.im wondering if anyone has or had this happen to them?please share if so Reply Kristin Hardy hi Teri, yes, I deal with this a lot. there are a few things I do significantly improve matters for me. Usual caveats: this is only what works for me and for my disease, be sure that you consult with your doctor before making any medical decisions, etc. Get enough sleep: if I get less than five hours of sleep, I absolutely can't hold my head up straight. Seven hours or more is essential for optimal function. Do the cobra yoga pose: look this up on YouTube. The gold standard is to do it on the floor but I have had good success doing it in bed before going to sleep or even standing at the kitchen counter. The key is using the back and neck to raise of the head and torso. E-stim of the erector spinae, lower trapezius, rhomboids, and rear deltoids: This doesn't just strengthen the muscles, it retrains the nerves to communicate more effectively. Ampyra: Ampyra is a potassium-channel blocker FDA approved to treat walking issues in MS. Potassium channels don't know from whether a nerve controls leg muscles, muscles, or neck. I take it about our before I plan to get up really helps. Conversely, when it starts to wear off, my head definitely droops. Anyway, this is what works for me. I'd be interested to hear if any of these work for you –directors I made, lower trapezius, and hoists Reply R Deep breathing exercises pump and circulate lymphatic fluid. Does your treatment plan include that? Reply John Connor No. I’m no expert but the experts stressed the bio-mechanical nature of exercice was the best way of shifting it. Supply peer reviewed medical evidence & I’ll give it a go. I won’t hold my breath.... Reply The lymph life- meg Great read! I've had it for 15 years, it's always a trial a error or treatments and combos. Maybe try another MLD therapist, sometimes it just helps to soften and keep it moving and doesn't 'look' better. Swimming is good too. Hope you get some respite soon? @thelymphlife. Reply Jan I have something that meets the description of lymphodemia, previously (wrongly in my view) diagnosed as Reynaud’s. Observationally, it seems to have a correlation with autoimmune drug therapies (DMTs). Is this a possible side effect? Reply Brenda Sometimes it is a separate disease. Like I have a hypothyroid.But it doesn't make it any easier. My husband had lymphedema also, had surgery to remove some on one leg, it really helped him, he wanted to do the other leg as well. Few plastic surgeons would do anything. Reply Pamela Williams I've had MS for 13yrs.and ive never had that problem but the problem i have is that my head jurks at times im looking for answers for this.Hopefully we're get a reply. Reply Jennifer Bodurtha It's already May 31st, but will add my story: Have had MS for 31 years and I am now 58. Been thru Copaxone, Techfidera and now have infusions of Tysabry.sp? Anyway, am also eating more healthy including calcium, magnesium and vitamin D. Too soon to tell, only been 3 days but have avoided saturated fat all this time. Use a walker, and am very blessed to have such a great family and church brethren at my local Independent Baptist Church. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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