Quigley's Cabinet: Galyons' galleons

Friday, January 2, 2015

Galyons' galleons

Upon reaching their 63rd birthday on October 28th of last year, Ronnie and Donnie Galyon of Beavercreek, Ohio, U.S., became the world's oldest conjoined twins. They have outlived Italian twins Giacomo and Giovanni Battista Tocci and the original "Siamese twins" Chang and Eng Bunker, both pairs of whom lived into their early 60s. The Galyon Brothers celebrated with a trip to Florida to visit Disney World and Busch Gardens. They live with their sister-in-law and their brother Jim, who says, "It's a lifelong dream, and they are absolutely loving it." They certainly would not have been as comfortable at home or on the road if it weren't for their customized bed and wheelchair (SLIDESHOW HERE).

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§ The Health Diary

~3/1/11 Today was the day we went to Orlando so that I could be assessed and measured for a powerchair (motorized wheelchair). This big change was initiated by me and precipitated by a fall from my scooter in mid-January (see my posts of Jan. 21st and Jan. 24th). I had swiveled the seat and leaned my head on my arms on a table for a little rest - as I sometimes do - and when I raised up, the spasticity in my legs was so strong that I was pulled forward and ended up on the floor with my legs underneath me. With some pain, but no bruising and little swelling, it was several days before I went to my doctor and found out I had fractured my tibia. After an aborted trip to an orthopedist who refused to treat me because I could not get onto his x-ray table unassisted, and a weekend spent wearing a splint from ankle to mid-thigh that was put on over the course of 8 hours at the emergency room, I finally (at the office of a much kinder orthopedist) had a cast put on my lower leg. After several weeks, during which I've gotten more - but not entirely - self-sufficient at using the bathroom at night and getting dressed, the cast is due to come off in 2 weeks. Even though I now wear a seatbelt on the scooter, a powerchair will be more secure and in many ways more comfortable. It will force me to have better posture, but will also allow me to have a little catnap whenever I like (check out the tilt, recline, and leg lift features here). When I sent a similar link to my friend Cris, she said, "It looks like you will be able to leap tall buildings in a single bound on that thing!" I should have it in about a month.

~12/3/10 Sorry for the big gap since my last entry. Things have been relatively stable and I've finally worked out a routine to get the most productivity out of my day. When I watch TV at night (usually a 10pm program), I use this "Cat's Paw" hand exerciser that my yoga instructor recommended - it's fun! The weather here has changed (high of 70 during the day, low of 40 at night), but a little bit of a chill rather than too much heat allows me to move a little better. I got an e-mail from the British journal The Lancet asking me to post a link to their site about M.S. It is very informative, so I have done just that (above).

~8/12/10 To know me is to understand that I don't like to talk about my health (which is no doubt why I update this diary so infrequently) and that my reluctance does not stem from denial. I think it's because having to live with MS makes me strongly opposed to the idea of devoting any more conscious time to it. Beyond a concerned "How are you doing?" my eyes start to glaze over and I'd rather be talking about anything else. A friend who was over the other night suggested that I do a 2nd blog on the subject of MS, and was very surprised to learn that that was one of the last things I would ever do. I want to be seen as a woman with many interests and a talent for writing about them who happens to have MS, not as a woman with MS who happens to be able to write well about her many interests. Ask me about my blog, not how my last infusion went.

~5/6/10 Oops. When Del was driving me home in the van after I met some friends for our weekly Scrabble games, I slid off the seat of the scooter and became wedged in between the scooter and the front seat of the van. My legs were doubled up, but I was able to relax and not tense up, so the position was uncomfortable but not painful. We were less than a mile away, so we hurried home and my Mom and Del repositioned the scooter and lifted me under the arms to put me back on it. I have an ongoing antagonistic relationship with gravity, but no lasting effects from this incident.

Meanwhile, I've been meaning to describe the way I keep my mind occupied instead of focusing on lifting up my legs, which I cross over my lap one at a time while on said scooter to put my shoes and socks on: I spell words backwards - whatever comes into my mind, complete with spacing, capitalization, and punctuation, for instance "y-e-l-g-i-u-[cap]Q-[space]-e-n-i-t-s-i-r-h-[cap]C." Strange, but it usually does the trick.

~3/17/10 Things are steady on the health front, but over the last month I've had a flurry of news about MS treatments, so I thought I'd share the links. The National MS Society offers a fact sheet about the newly-released oral symptomatic medicine for improvement of walking in people with MS, Ampyra. Other medications pending FDA approval are listed on page 6 of the NARCOMS Newsletter. MS patients benefit from stem cell therapy and occasional reader Wendell wrote to tell me that (largely unreported) research in the U.S. and Germany indicates that people taking Tysabri have 6-7 times more stem cells in our blood. There is growing clinical evidence that medical marijuana reduces the spasticity and other symptoms of MS. Reader Chase pointed me to this site that discusses the health consequences of using aspartame, including anecdotal evidence of onset and worsening of MS symptoms. It is known that MS symptoms subside during pregnancy, and researchers are studying the possible benefits of hormones - including estrogen and progesterone - on the disease.

~2/18/10 Far fewer meltdowns now that I am leading a less stressful life. I did have a cry after coming down with a cold last weekend, because for the first 2 days it completely amplified the symptoms of the MS, so not only was I miserable with an alternately runny and stuffy nose (no cough, thank heavens), I was frustrated by moving even more slowly than usual and having my legs fly out of control every time I did so. I'm a firm believer in Zicam, and that brought the cold under control pretty quickly. It's almost gone - though I still sound a little nasally.

~12/30/09 She has not complained about preparing my meals, helping me in and out of the shower, or doing my laundry, but my Mom did make the tongue-in-cheek suggestion that I purchase this item for use as a bib!

~12/5/09 Bringing you up to date at last, I have gotten quite comfortable in my new surroundings and things have fallen into a routine. I usually check my e-mail and the weird news first thing, and may or may not ask for some tea or hot chocolate (I don't eat breakfast). My Mom opens my window shades and makes my bed. With my ceiling lift, I am nearly self-sufficient getting in and out of the shower. I do yoga in class T and Th and on my own the other days. I start my blog post, break for lunch (prepared by Mom) at noon, then finish that and do some other writing (my next book, book reviews, and right now peer-reviewing a journal article). I intermittently and rather obsessively check my e-mail (I've got at least a half-dozen games of Lexulous going) and more weird news, and never quite get caught up with all the things on my list. We have dinner at 6:30pm, while watching the national news, and the evening is up for grabs - a lot of TV, often in the background while I research a future blog post, some reading, maybe some word games with Mom, etc. She has to close my shades and turn down my bed for me. I am usually in bed at midnight and set my alarm every morning for 7:30, although I've been known to hit the snooze button more than once on occasion.

One of the things I've adjusted to fairly seamlessly is never (or rarely) being alone in the house. When my Mom and Del want to take a vacation, we arrange to have someone here to look after me. My friend Cris was here for 3 weeks (and Dad for 1 overlapping week) in September while Mom and Del went to the Florida Keys, my friend Deb was here for a weekend in October, and my Dad and stepmother were here for Thanksgiving while Mom and Del went to Texas to visit a friend.

The most frustrating thing is that due to the decline in my manual dexterity, the number of bathroom breaks I need to take, and other factors, everything takes a lot longer than it used to, so I am getting less done in a day than I was doing when I wrote, blogged, and worked full-time. I am grateful not to have the stress of having to get to work and get through the day, however, and have in fact finally been approved for Social Security Disability benefits. With Dad's help on this last visit, I am now prepared to jump through some final bureacratic hoops.

One of the annoying symptoms of M.S. is the spasticity in my legs. When I move them after sitting relatively motionless, they will stretch out straight, shake uncontrollably, or a combination of both. I use some of my yoga relaxation techniques to try to forestall or minimize this - which can be quite dramatic and nearly pull me off the scooter - but I am also on a medicine called Tizanidine. I had been taking 3 tablets at night, but just found out during a follow-up visit with my new neurologist here in Florida that I have been taking it wrong and can also increase the dose, if necessary. I should be taking it 3 times a day, because it wears off. So I started the new dosing this morning and haven't seen the progression of the spasticity as the day wears on, so: so far, so good.

There is some news on the MS front. Although I am way beyond ambulation, the first-ever oral medication specifically for MS - intended to improve the gait, has been recommended for approval. Researchers are also beginning studies of a possible breakthrough treatment that an Italian doctor has discovered. Lastly, I just heard from a reader who has a blog - Pawn to Queen - with the intention of helping people with disabilities receive proper treatment from public services.

~9/21/09 Since my last entry, I have gotten accustomed to my new lift (a.k.a. the "zip-line") and here is a video as I demonstrated it for my Uncle Chuck. My friend Cris is here for an extended visit while Mom and Del take a much-needed vacation. Del helped immensely with getting my new room ready - painting, staining, helping build the deck, assembling new furniture, and my Mom has been invaluable helping me adjust and unpack, among other things. All of my books and collections are in the right cabinets, but Cris and my Dad (who will also be here in a couple of days) will help me get the "museum" just right. Tomorrow I have to see a doctor designated by Social Security to give me a "repetitive muscle strength test" as part of my disability claim. Then on Wednesday, I have my monthly infusion. I have succeeded in making yoga part of my daily routine and - having purchased a lifetime "club membership" to the senior community where I was living - will be able to continue with the class I attend T/Th. Meanwhile, I turned 46 on 9/10 and got so many well-wishes that I am still answering them!

~9/4/09 Yesterday was moving day - hence no time for a post. Del, my Mom, and I are finally under one roof! Photos of my room will follow and I will blog later, after lunch and a power nap...

~9/3/09 I fell this morning while making my transfer from scooter to toilet, ironically two days before I will be moving into my fully-equipped room (see 7/17/09 entry) at Mom and Del's house. I survived without injury and it doesn't seem to have sabotaged my self-confidence. Also to report: I have had an uneventful follow-up appointment with my neurologist, another of my monthly infusions, and yesterday - for the 1st time in 20 years, and on the advice of my new g.p. - a flu shot. I am in the process of applying for Social Security disability benefits and they require a muscle strength test, which I have scheduled for later this month. I am also waiting to hear if I can continue my privileges here at the senior community after I move out, so that I can still attend what is the only seated yoga class in the area. I'm looking forward to moving into my new digs, to several visitors I've got lined up over the next few months (which will give my Mom and Del some well-deserved time away), and to my 46th birthday right around the corner on Sept. 10th!

~7/29/09 I have been showering with the use of a shower chair, which works very well and eliminates the stress of struggling on and off a shower bench, but I do need my Mom's assistance getting the chair - with me on it - into and out of the shower stall. She devised a method of securing my smallish towel to a string so that when I'm done, I give it a yank and it comes flying over the door of the shower into my lap. I'm big on nicknames (as my friends well know) and animals (as my readers know), so I call this trick the "flying squirrel"!

Here's something else that will make you laugh, but first the sad part....I decided the other day that I can no longer travel and stay overnight at a hotel. I just don't have the physical resources to adapt to different configurations, in the bathroom for instance, even if there are handicap rails. And I'm not sure I would be able to get up on - or sit myself up in - a hotel bed....Here's the funny part. I used to fly until recently (to Seattle, Phoenix, etc.) and boarded early because I need to be put on the plane with an aisle chair. On one airline (I don't remember which one), the flight attendant explained that he would get me out in the event of an emergency, but asked, "Would you prefer that I carry you over my shoulder or drag you by your feet?" The thought of my head bouncing down the aisle prompted me to reply that I would prefer the shoulder, thanks!

~7/25/09 My Mom and I watched "Music Within" (2007) on Wednesday and we both loved it. It's the true story of Richard Pimentel, who came back from Vietnam with a hearing impairment and became instrumental in the passage of the Americans with Disabilities Act. Sounds kinda boring, but it is riveting, at times irreverent, and has a great 1960s soundtrack. The ADA just celebrated its 19th anniversary and I am grateful for - among other things - the "blue buttons" that mean I don't have to wait for help to open doors!

~7/17/09 My application for long-term disability benefits has been approved. I have settled into my new routine here in Florida, although I hardly spend any time outdoors because my body turns to a lead weight in the heat and it's been in the mid-90s since May. The renovations to my Mom's house will be complete by September, and we will have a generator for my A/C unit in case the power goes out. We met with the SureHands rep this morning and will be installing a ceiling lift system - which we call the "zip-line"!

~6/21/09 First Lady Michelle Obama's dad had MS. I don't know how I missed this, since she talked about it during her 2008 speech at the Democratic National Convention, but I only heard it mentioned this morning. She says he taught her a lot about work ethic, since he got up and want to work on time every day without complaining about his physical constraints. He walked with a cane and died of "complications from MS" in 1999.

~6/16/09 I have been introduced in the newsletter to fellow residents of Waterman Village, the senior community where I am living temporarily. I have given up on the Nu-Step machine in the Wellness Center, because I can't keep my legs in position, and instead am focusing on the yoga, which I do in a class twice a week and on my own each morning that I don't have class. I have noticed improved strength in my arms. I go for another Tysabri infusion on Wednesday and received a couple of comments on that. There is more information about the drug here, and a reader noted that research in other countries has shown its effectiveness against cancer, as well as MS. I don't notice a day-to-day difference, but unlike other infusions I have tried, it doesn't "wear off" by the end of the month, so I guess it is keeping me on an even keel. In other news, I ran over my Mom! - I backed up over her bare foot on my scooter...

~ 6/11/09 I have established a relationship with a new primary care physician down here in Florida and had my first appointment today, which I am happy to say (although I do like her very much) was uneventful and requires no follow-up labs or tests. She was glad to know that I already have a neurologist here for specific treatment of the M.S.

Speaking of which, my friend Kristina alerted me to the fact that Exene Cervenka, co-lead vocalist and founding member of the band X, was just diagnosed with multiple sclerosis. Other notable Americans with M.S. include singer and actress Lola Falana; former Mouseketeer Annette Funicello (see my Halloween slideshow at the bottom of this page); actress Terri Garr; singer and actress Lena Horne; talk show host Montel Williams; comedian and actor Richard Pryor (1940-2005); and the actor who played "Squiggy" in the TV show "Laverne & Shirley," David Lander.

§ 6/3/09 The Breast Cancer Patient Protection Act needs your support. Lifetime has an on-line petition to support passage of legislation to allow mastectomy patients 2 days in the hospital after surgery, rather treating them as outpatients. My sister brought this to my attention and all it requires is your name, e-mail address, and zip code - and a moment of your time.

§ 5/31/09 I had my first monthly infusion of Tysabri since being here in Florida. I suffered no ill effects from missing a month, and I got along fine with my new nurse Debbie. She drew lots of stories out of me about my job, my books, and my blog...and then we discussed face transplants, gory accidents, limb-lengthening operations, etc. She used to work for a microsurgeon reattaching severed fingers!

I have settled into my routine here at the senior community, participating in seated yoga on T/Th and beating the ol' ladies at Scrabble on Thursday afternoons. On M/W/F, I have been using the Nu-Step machine over at the Wellness Center. I am hoping to build back up some upper-body strength, but so far the yoga relaxation techniques and stretching exercises are the most beneficial (help me sleep, deal with the spasticity, and reduce meltdowns).

§ 4/15/09 I just learned from author, editor, and essayist Evelyn Bence that my first boss - Rev. John B. Breslin, S.J., who hired me 22 1/2 years ago to work for Georgetown University Press - has Alzheimer's. I am very saddened by the news. As frustrated as I get about my own health, at least I still have my stories...

§ 4/11/09 I'm settling in to life in Florida, one month into my medical leave from work. My Dad and stepmother Sarah flew out and drove me down in the Mother Ship, and the trip was efficient and uneventful (except for the rescue I needed in the Cracker Barrel restroom). I spent the first few days in the guest bedroom at my Mom and stepfather Del's house, but I am now staying in an assisted-living apartment a mile away. My Mom has been staying with me until I'm comfortable with my new routines re: transfer from scooter, using new bathroom, etc. I am strongest and most confident in the morning, and by bedtime I'm ridiculously flimsy. I am wearing an "I've fallen and can't get up" necklace that gives me a direct link to the complex's gatehouse, but I haven't had to use it yet (although Mom and Del have had to help me transfer and have yanked me off the floor at their house).

Healthwise, I'm still weak, shaky, and stiff, but having a much lower stress level and staying in the A/C have helped. I have a referral to a neurologist so I can stay on schedule with my monthly infusions, and have my first appointment on Tuesday. I have not found a local adaptive yoga class, but plan to resume a daily routine by following a dvd about yoga for people with MS. It took a few days to get my phone and Internet hook-up here in the apartment, but I am on-line and blogging from my own laptop. I am also enjoying my Kindle, which makes reading books a fluid process again, instead of a 2-minute break every time I turn the page without bending or tearing it.

I'm eating much better, too. Healthy home cooking (and grilling), thanks to my folks. Very little fast food (previously a necessary staple). And lots more fruit and vegetables (although my palate for veggies is limited to green beans, potatoes, carrots, and salad - no broccoli, squash, or asparagus for me!) Less salt, virtually no junk food, and limited amounts of chocolate - except today: it's Easter, after all!

§ 3/5/09 Since my last entry in The Health Diary, I have fallen twice in the bathroom at the office and have been picked up off the floor by my colleagues. It's wounded nothing more than my pride and my confidence, but has reinforced my decision to take a 90-day medical leave from work to try to regain my health. I will spend the time de-stressing, eating better, and practicing yoga under the supervision of my Mom and stepfather in Florida. I will be blogging from there as of the end of this month...

§ 2/23/09 In better spirits and feeling like my "normal" self today. Lately, I've been thinking about my similarity to other big-brained animals (octopi, dolphins, elephants) with cumbersome bodies, but maybe I am anthropomorphizing and they are not frustrated by their bodies at all. Hmmmm.

§ 2/22/09 I woke up in meltdown mode. When my friend Deb went to China, she saw a poorly translated sign at the top of some steep, rocky stairs that warned, "Not for partial people." I feel like a partial person today.

§ 2/18/09 I've been falling with more frequency - in the bathroom at work a couple of weeks ago, in the van this past weekend, and then a very close call at home this morning. I talked to one of my favorite nurses at my monthly infusion and she told me about another patient of hers who appears to have a very cluttered home, because there are books on the floor - actually, she has placed them in strategic places throughout the house so that when she falls, she has something to read until she is rescued! I was also crying a lot, but I think I'm all cried out - in part because my neighbor Steve has given me a lot of emotional support lately and my friend Valerie has solved my saggy mattress issue by inserting a piece of plywood under it, so I am sleeping better.

I have been listening repeatedly to the song "Right as Rain" by Adele and finally thought to have a good look at the lyrics, which I found quite applicable to my own situation. At about that same time, my boss - a photographer - forwarded this link to a slideshow of self-portraits by a woman with MS, Patricia Lay-Dorsey, who calls her essay "Falling into Place." I identified with those photos, too, and plan to contact her as soon as I post this.

§ 1/30/09 I bore up pretty well under stress today, but exhausted all the same. Day started with a crisis at work, but I had to leave at noon to get the van to the shop. Of course I got lost (one of my biggest phobias, which conjures tears in moments). The Mother Ship is now driving better, but I'm not--after a long day, my arms have begun to get tired like my legs. But at least I get a second wind and refresh overnight.

§ 1/17/09 I am experiencing technical difficulties! Yesterday, I spent 3pm-3:49pm stuck in the handicapped bathroom at work. This time I didn't fall--the deadbolt wouldn't let me out and I had to be rescued by Facilities. Then today, on the way to the local mall, I noticed that the Mother Ship was very bouncy in the back and that her "kneel feature" wasn't working, so I think her hydraulics need repair. While I was on the 3rd floor of the mall, the elevator stopped working and I had to exit by way of a huge freight elevator thanks to two of the housekeeping staff. Healthwise, I am feeling fine and happy to report that none of the above caused a meltdown...

§ 1/7/09 Don't want to jinx anything, but I've been getting along fine (with BeBe's help, of course). The legs have been "good girls," instead of the "bitches" I sometimes call them. I deal with my body by committee, often yelling at various parts to do their bit! Since I have little strength and balance, it's a matter of fine-tuning how I do things so that it's most efficient, and about doing them the same way each time, so that it's habit. Overthinking an action can be a problem.

§ 12/24/08 BeBe and I are once again reunited! I picked her up this afternoon. She felt incredibly tiny when I got back on her (a good thing). In grad school, I had to make a presentation about the postmodern body. I began by talking about how my scooter and I are a cyborg!

§ 12/23/08 Hunky-Dory (as I have dubbed this big, ugly-ass scooter) and I have achieved a working relationship after an ugly tousle at the end of the evening wherein she had me stuck in my tiny bathroom for a 1/2 hour until I finally wiggled and inched her out. We're ok today: got a great night's sleep and looking forward to time off.

§ 12/22/08 Made it through yesterday with nary a tear. Valerie and Roger brought cheeseburgers from Five Guys for lunch and we hammered out the plan that we carried out this morning. The good news: BeBe is where she needs to be for repair or replacement. The bad news: the rental scooter they gave me is clunky as hell--square front, wider with armrests, and with the dreaded cushiony seat that Yellow Jacket (the last awful loaner) had, which means I have to be extremely careful with transfers. And I will probably not get BeBe back until after Christmas. Well, at least I've got that covered: I sent out cheery holiday cards and chose this year's e-card in the midst of meltdowns. Today, I had a good cry when I got home from work and since then I've been ok. Looking forward to sleeping in my bed.

§ 12/20/08 Past due for an entry in the Health Diary and the fact of the matter is that I was riding kind of low after my last infusion. The usual wiriness (plus an excess of spasticity, i.e. "shaky legs") kicked in, then I was in the manual wheelchair in Illinois, but came back with a slight cold, which dragged me down again. I got quickly reaccustomed to the scooter, then made it almost through the week, when-- ironically, since I had another infusion in the morning--I fell in the bathroom at work again Friday afternoon. I didn't hurt myself and was quickly put back up on the scooter thanks to colleages Joni and Joyce, but it gets worse. My scooter, recently repaired, had been slowing down again when going in reverse, indicating the same damned problem (a design flaw, in my opinion) that was just fixed. Of course Murphy's Law kicked in when I made a mental note to deal with the scooter as soon as the cold was gone and I was back to "normal." At 11 PM last night, BeBe decides not another inch backward. So there I was and had to call Valerie (Steve is sick) to help me transfer from scooter to manual wheelchair, which is where I am sitting now. It is much lower than the scooter, so although I can use the bathroom without too much of a problem, I can't get into the bed (have to sleep in the recliner) or the van. But I have to stay in the wheelchair until Monday, because the scooter place is closed on the weekend and I can't even leave a message. I am resigned to a manual weekend, resentful that I have to contend with physical and technical difficulties at the same time, liable to cry at the least opportunity, and alternately stubborn about maintaining the status quo and wondering how long my body will cooperate. Thinking about large and small questions with a tendency to melt down at any moment. It's hard. If you are reading this and thinking of calling me, please remember I hate the phone (!) and consider an e-mail or text message. I will call you back at an opportune moment. Thanks all for your kind thoughts. It may be the beginning of the end, but it's not the end. I'm still a trooper.

§11/21/08 Infusion this morning and worked the rest of the day. I'm feeling wiry, but in general I am exhausted by the end of the workday. I think part of this is due to a chill I get every day at about 2pm. I begin to tense up and scrunch up my shoulders...and stay that way all afternoon, despite putting on a scarf, hat, or sweater. By the time I shiver to the van, I don't have much oomph left to transfer to the driver's seat. I may have to get a space heater for the office, although I have to be careful with that, too, because I can easily get overheated without realizing it--and then I'm worse off than when I started!

§11/11/08 Pleased to report that I have been feeling better lately. I feel "wiry," like I usually do right after my infusion. By that, I mean that I feel like I have some bones in my limbs, rather than feeling like a blob. To manipulate my body requires just the right combination of relaxation (yoga helps) and wiriness (Tysabri helps), so if one or the other is missing, things can get dicey (but I'm always as careful as I can be and have my cell phone handy).

§11/4/08 Big day today! I had a mammogram (using a new machine that allows me to remain seated on my scooter). I resumed weekly sessions of Adaptive Yoga (done from my scooter - working on breathing, relaxation, and upper body balance and strength). I voted for Barack Obama (took advantage of newly-offered curbside voting). And the short piece I submitted to the Washington Post about living with a chronic illness was published!

§10/29/08 Lately, I've been dragging a bit despite my recent infusion. I've been keeping my errands to an absolute minimum because I'm so worn out by the end of the day. I'm a hermit anyway, so I rarely get cabin fever. But when I do and just need a get-away, I have found some great websites: I can see a slideshow of Pompeii or Petra; I virtually visit the Taj Mahal or the Eiffel Tower; or I can look in on the animals at the National Zoo or the Elephant Sanctuary. The best site of this kind that I found is Panoramas.dk, where I just had a 360-degree view from the top of Mt. Everest without too much of an effort!

§10/24/08 Earlier this week, I brought a good friend with me to hear a presentation by my neurologist Carlo Tornatore about current and future MS therapies. (He is very optimistic that more than a half dozen new medicines will be out within the next ten years, including some in pill form.) I am currently doing a monthly intravenous infusion of Tysabri, and I infused this morning. The effects usually last the full month, but fell a little short this month--I think because of the stress and exertion of being on the loaner scooter(s). Last night, I lost my balance and fell in the bathroom. I called Steve, my next-door neighbor, and he hauled me up off the floor. He has graciously come to my rescue a couple of times since I met him a couple of years ago. I was convinced we were meant to be neighbors when he told me he was born on Halloween!

§10/18/08 Pleased to report that I have had a pleasant and meltdown-free morning of running errands, the most important of which was my annual pilgrimage to the Salvation Army for components of my Halloween costume...

§10/15/08 I just finished the semi-annual NARCOMS survey I have been filling out for years. It is long, but pretty easy to complete, since it is on-line. The hard part is assessing the changes since the last survey (fatigue, bladder/bowel function, gait disability, spasticity, etc.), since it’s a matter of indicating current status with a radio button—in effect, locking in what one had hoped was only temporary, but in fact represents yet another step down. Kind of odd to use a walking metaphor in this context, but there it is.

§10/10/08 William J. Cheverie (1921-2008) died on 9/24. He was the father of my friend Joan and widower of her mother, who had MS. Joan shared the eulogy she recently gave in Boston and it included these words:
As you may know, Dad cared for my mother during her long illness. He did all the cooking, all the cleaning, and all of her care without any help. I watched as he brushed her hair and then held up a mirror for her to look at as he asked her if she liked it. Sometimes she said no, that she wanted it another way, which he did and then showed her again. I asked him, "Dad, why do you do this when you have so much else to do and so little time? Does it really matter?" He said to me, "Joan, this is one of the most important things I do all day. Everyone needs to be independent and this is the level of independence that she has now...so it's very important that she be able to say what she likes and doesn't like to keep that independence."
I didn't know him, but Joan's dad sounds like a remarkable man.

§10/9/08 BeBe and I are happily reunited!

§10/9/08 People tell me how strong I am to be living on my own and still working full-time. Usually, I find the comments affirming and empowering, but sometimes (like yesterday), they shake my self-confidence and it takes a day or two to build it back up and "resume my normal routine," which is in fact what is keeping me going.

§10/4/08 "I am cheerful in nature and morbid in inclination—much better than being morbid about my health!" This is how I ended my 250-word submission to the Washington Post's "Living with..." series. Maybe they will publish my entry on Halloween!

§10/4/08 Loaner scooter has not yet merited a nickname. She and I are getting along cordially, but I miss BeBe's seat for 2 reasons: the loaner's plush seat is not conducive to transferring on and off and it also doesn't lock into place at 1/8 turn. In combination this has caused close calls and meltdowns (i.e. I have almost fallen and I have cried).

§10/2/08 I am on a loaner scooter after another scooter ordeal. BeBe is in the shop waiting for a part, so REP loaned me an older scooter (immediately dubbed “Yellow Jacket” because of its color). We got along ok until she left me in the lurch literally in the doorway of my building at work after 5pm. Luckily, I had help and got pushed to the Mother Ship, got home, and got pushed to my apartment, where I got into my manual wheelchair (yes, she has a name, too: “Rosslyn”). The Sept. 30th post was written from Rosslyn the next morning after spending the night in my recliner (bed is now positioned for scooter height and Rosslyn is a good 6-8” lower). Then commenced a 2-pronged effort to replace dead-as-a-doornail Yellow Jacket. I pursued REP and made a request of the MS Society loan closet. Both came through, REP first, so I called off the MS loaner with many thanks. I am now on a newer fully-charged model (nickname uncertain) until I get BeBe back.

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Friday, January 2, 2015

Galyons' galleons

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