THE ODDS (Debbie Does ALS)


What I've been doing

I don't believe that every little humdrum thing I do is of interest -- unless it involves my bathroom, of course -- so I've been uncharacteristically silent this last week. I've been busy, though, as you'll see.

Monday brought my new caregiver, Janet. She is scheduled to come every Monday, Wednesday, and Friday from 5 PM to 10 PM. What a difference it makes having someone here; I've already made the call requesting Tuesdays and Thursdays as well, as Rose will be working mornings for the time being.

Janet and I -- okay, Janet -- cleaned out my dresser drawers and a couple of small cupboards. We are going to go room by room, drawer by drawer, box by box cleaning and organizing all my "stuff." I want everything in order, then I will sit back and relax and enjoy my retirement. We are making a good start.

Tuesday and Thursday my goddaughter, Theresa, came by and read to me. She is a dear girl and enjoys biographies so we've been reading a book about Eleanor Roosevelt. I don't know if, when I was 13 years old, I would have been much inclined to spend time reading to an old next-door neighbor. Theresa has a kind and loving heart and I am so very grateful that she is willing to visit.

Wednesday morning my "money guy" and I went to see my lawyer about tweaking my will, adding a letter of instruction, and making my medical directive more specific. Art (the money guy) is accustomed to preparing letters of instruction such as I want so he will prepare a draft and work in concert with my lawyer. This is one more of those details I want to have in order so I can check it off the list and relax.

In addition to Theresa's visit, I spent some time Thursday contacting a company that deals specifically with mobility vehicles. Trying to find a wheelchair accessible van on my own through private owners was turning into a stupid headache. I've got the money worked out and hope to have a vehicle delivered next week. Finally. (Have I said that before? I hope this time is the last time.)

Friday was a day out with the girls! Five of the women I used to run with and I went out to lunch together. We drank sangria and had good food (and dessert) and caught up. As I looked around the table I saw the faces of women who inspired me, challenged me, and taught me. Such good women, and I am lucky to know them.

I also spent time finalizing the details for this Sunday's engagement party in honor of Becky and John. Menu, cake, flowers, etc. I'm looking forward to Sunday.

That's that. Better to be silent... isn't that right?


You can pick your friends...

My dear sweet Jenny, my dear sweet Lynne, and I went to dinner tonight. We've been trying to make it out the last couple days and tonight all the stars were aligned. Lynne got to my house just before 6 PM and Jenny arrived about 15 minutes later.

It's rather a production getting me out the door: I hobble down the hallway, glide down the stairs, then -- with assistance -- step down from my threshold onto my front porch. I am wheeled from the porch to the waiting car. This evening there was an additional step incorporated into the procedure. After rising from the stair glide I was aware of an uncomfortable sensation, due to an invasion into restricted territory. A mere five months ago I was able to manage this problem on my own, but no longer. Before I got into the wheelchair I had to ask someone to please un-wedgie my shorts. Bless her heart, Lynne didn't hesitate and she picked my wedgie like the true friend she is. My cheeks, looking for every opportunity to test one's mettle, demanded a repeat performance after we returned home and I was hobbling down the hallway back to my bedroom. Lynne came to my aid once again.

Blowing my nose now requires that I use something far more substantial than a mere tissue. Dear sweet Jenny purchased a value pack of washcloths from the Dollar Store. These little terrycloth treasures -- known affectionately as "washcloths from hell" -- are a perfect size and texture for my nose blowing needs. (Note to the easily queasy: what follows isn't necessarily delicate.) Texture is important; the little terrycloth loops catch what I so often leave behind. While on the way to dinner this evening I had occasion to use a washcloth from hell but, as is often the case, additional texture effort was required. I asked dear sweet Jenny to flip open the visor mirror so I could inspect; that extra effort was necessary was horrifyingly evident. While the terrycloth loops went to work, we three not so prim and proper women conversed about how my eldest daughter is constantly (though surreptitiously) checking to make sure my nose is publicly acceptable. Who knew.

Friends, wedgies, and noses. How many can you pick?

Doing the math

I called my good buddy at the Honda dealership today to ask about purchasing a used van from their inventory, and also inquired about modifications to same. He advised that Honda has a mobility reimbursement program, but only for newly purchased or leased vehicles. He asked if I would ever consider leasing; the payments over the term of the lease would be roughly equivalent to the amount I would spend on a lower end used vehicle.

Leasing a vehicle had never crossed my mind. It makes sense to do so, however, so I think that is the direction I will go.

What do you think?


A new addition

Comfort Keepers. On my insurance company's "approved" list. Caregivers are trained to deal with patients suffering from a variety of maladies, including ALS. My needs were assessed today; the resulting plan of care is most comprehensive. Starting Monday one of their aides will come to my house each Monday, Wednesday, and Friday. I will add Tuesday and Thursday once Rose's schedule is more consistent. I'm also hopeful that Rose can arrange to be hired by them so I can have her every day.

Everyone is happy about this new arrangement. I'm looking forward to having a shower EVERY DAY and having range of motion exercises EVERY DAY and having someone on hand EVERY DAY to help me organize my mess.

It's hard to believe there was a time when I was reluctant to have anyone come in and help. My reluctance was borne of my inability to admit that Louise had penetrated through my denial barriers. I didn't need help, I was fine -- my daughters provided all the assistance I needed. Selfish, stupid, ridiculous me; my stubbornness was taking its toll on my girls. I might not need help... but they did. Everyone has benefited from Rose's presence; the benefits will be multiplied with the addition of another caregiver.

I'll say it again: thank goodness I took out long-term care insurance.


I heart...

Turbo. Me likey. No, me lovey.

Van go back

It sucks when you get your new handicapped van home only to discover it is truly handicapped -- fortunately the seller is a good man and is going to take it back. At issue: the clearance. It never occurred to anyone to measure. Lesson learned.

It also sucks when your Internet provider is experiencing a service outage. The power went out Monday night and with it went my connection. Service was not restored until just a few hours ago.

I have to admit I was feeling rather like Mrs. O'Leary with regard to the power outage. As I am wont to do, I was laptopping in my lift recliner late Monday night. After publishing the previous post I was ready to call it a night. At the exact second I closed my laptop, the power went out. Not just in my neighborhood, I think it was the whole grid because, when she returned home from visiting a friend, Cecilia reported several traffic lights were out as well. Now I know I did not cause the outage but the fact that everything went dark at the very moment I closed my laptop was too weird.

Recall that I was situated in my lift recliner; there I remained until power was restored more than 3 1/2 hours later. Thank heaven nature kindly waited to call until AFTER I was able to leave the chair.

Everything is back to normal now and, once again, I am searching for airbrushable transportation.


Another bucket list item checked

Saturday was wedding dress party day. Wendy, Jenny, Lynne, Stephanie, baby Bella, and I met Becky in Richmond; we went to two salons and oohed and ahhed at all the silk and lace and beading. Sorry, no pictures of Becky in any of the dresses -- that will come in March.

Sorting through 876,514 plastic bags.

Pick that one, and that one, yes, that one, too...


Taking a break from the wheelchair. Those things are NOT comfortable.

Discriminating shoppers...

Becky, what do you think of this?

I think the third dress Becky tried on will be the one she gets. She looked incredible in each one, but number three seemed to suit her the best. We shall see...


Slip sliding away

Bob and Marsha have been my next door neighbors for years. Their third child, Theresa, is my goddaughter and Marsha has been abundantly helpful to me, visiting, bringing dinner, even feeding me. Tonight something happened that brought us closer together than we were before. I slipped. Some might (and some did) say I fell. But I did not, I slipped -- actually, I slid.

Cecilia, responding to my request for assistance, helped me get up from the lift recliner to a standing position (yes, even with the special chair, I still need assistance). I thought I had my balance but I was mistaken; I teetered to left, fell onto the chair, and slid to the floor. This might not have happened but for the fact that I was wearing my oh so sexy knickers (as Rose likes to call them) AND landed on my very glamorous, very functional but very slippery zebra print cushion (on which I was resting my back); my size 11 feet weren't able to support me and down I went.

Cecilia managed to prop me up, then went to call Jenny. At the same time, Marsha arrived to get my dinner for me. Not able to lift me by herself (remember, I am the walr-ass) she called in the few, the proud, the Marine. But not until I put something on over my drawers -- I still have a little bit of pride. Marsha had her work cut out for her wrestling my black pants over my uncooperative legs and rear end.

Poor Bob, I am sure in all his deployments he never faced so unpleasant a duty. He got behind me, Marsha moved to the front, Bob hoisted while Marsha prepared to catch. None of us being certain of my balance, we stood as one for several long seconds. As they slowly released their collective grip, I regained my balance and finally stood on my own.

The battle having been fought and won, Bob was thanked and dismissed. I think he deserves a purple heart -- as he walked home, I looked out the window... he was limping. Marsha deserves a medal as well. In addition to the heroic actions described herein, she became a certified potty pal.



At long last my other long-term care insurance has been approved. Now it is up to me to find a provider.

The insurance company sent me a list of potential providers in my area. I called three of them today. There are several others I will call on Monday.

Of the three I called today, two were unexceptional and are on the "to be considered" list. The third, however, left me cold, to wit:

(Phone rings.) "Hello? Hello?"

"Hello? Is this (insert providers name)?"

"Yeah. Hey, can I call you back?"

"Um, sure, okay."

(Phone rings.) "Hello."

"Hi, sorry about that, I had forwarded the phone to my cell phone and I couldn't tell if you were my family."

"I'm a little concerned about your lack of professionalism. I wonder if that translates into the service you provide."

"No, we are professional. I just couldn't tell who was calling."

"I have ALS and I am looking for a home health aide."

"Is this Medicare or will you be paying cash?"

"I have long-term care insurance. Tell me, do you care for other ALS patients?"

"Oh yeah, sure, we have other LAS patients."

"Well, I have ALS. You know, you're not inspiring any confidence. I think it's best if I just go."

"Oh, okay."

Maybe I am too quick to judge, but first impressions are important -- particularly in this sort of situation. And, as my daughters will tell you, I have fairly high customer service expectations.


Van Go

With any luck I will be in possession of a new (translated used) Ford van by the weekend or early next week. The wheelchair lift (already installed) will allow me to go about in my power chair which is infinitely more comfortable than the transport chair.

I found the vehicle on the Richmond Craigslist. The owner's son kindly sent me the vehicle ID number so I could get a Carfax report from my friend at the local Honda dealership; it came back clean so I sent my future son-in-law (I love saying that) over to do the due diligence. John is very knowledgeable about all things mechanical and his follow-up report was incredibly thorough; he concluded the vehicle was roadworthy so I made an offer.

I am poorer by many thousands of dollars but this is one of those big-ticket items that must be purchased in order to maintain a reasonable quality of life. Getting in and out of a car is close to impossible anymore and, unlike the power chair, the transport chair does not let me elevate my legs. If you've ever had the misfortune to see my legs and feet after a period of un-elevation, you know why this is an issue.

There are two rows of seats behind where the wheelchair locks in, plenty of room for everyone. This may become the official party van. If so, it will have to be properly decorated. What you think of these?
Isn't this breathtaking? I knew the moment I saw the horse running by the water it was perfect. (If I select this one, I will have to change the name to Louise.)

(This will have to do until I can master the latest and greatest in Word Art. Apologies.)

I think the palm trees, the setting sun, and the purple water are so lifelike, so exactly how every sunset at the beach lives in my memory...

This one is almost perfect, except you will only see MY straw poking out of a bottle of Corona light, not extra. Unless, of course, there is no light to be had. Under those circumstances, one's only recourse is to suffer through a bottle of extra...or an extra bottle.

So many options, such a difficult decision. Maybe I will get all three; much like people who have multiple tattoos, I will have multiple airbrushes. I will be the envy of everyone.


Oh to be a Hindu deity

Today is Cecilia's 17th birthday. (I know, I can't believe it either.) I have not had to write or sign anything in a very long time; well, long by my standards, probably 4-5 weeks. Anyway, I wanted to sign her birthday card. The first time I picked up the pen it fell right out of my hand. After several attempts, my left hand positioned the pen in my right hand in such a way that I was able to scrawl "Love, Mom." My handwriting was no better than that of a five-year-old, but it was still my hand.

When ALS struck my right hand was the first to suffer. As my hand became weaker, many duties were assumed by the left: applying makeup, brushing my teeth, using a fork and spoon, etc. But now it's becoming more difficult to use my left hand and, there being no third hand to which to turn, I have to be creative. Enter the small plastic cup, small enough that I can grasp, into which certain snack foods are poured -- including McDonald's french fries WHICH I LOVE. It may look funny but it works, and it gives me the illusion of independence -- well, after someone procures the snack, puts it in a cup, and brings it to me. That's still being independent, right?

Certain foods require that I be fed by someone else and, when my left hand becomes as useless as my right, ALL foods will require a helper. Unless by some miracle (or a hideous curse) I wake up one morning like this:

Nodding gets by the doctor

I think I neglected to tell you that I met with the psychiatrist at my last clinic. This is the second time I've seen him in 2 1/2 years. He's not a bad guy but I'm amused by his thoughtful and compassionate demeanor. He asked me how I was, I told him I had ALS and was not happy about it. He nodded, eyes closed. He asked me if I ever thought of suicide, I told him of course, but that's not my style. He nodded, eyes closed. He asked me how I managed the "dark days," I said, "Klonopin!" He nodded, eyes closed.

When I received my follow-up report last week, his note said, "patient has excellent insight."

I thought it was funny.


Amitriptyline. My newest drug. I take it to minimize the overproduction of saliva (gross) which may have contributed to my recent (last Friday, July 2) ghastly sick day (which I did not publicly document because of its grossness).

I was SO sick. I don't remember the last time I was in such bad shape but I'm sure immoderate consumption of some alcoholic beverage was the cause. Not so this time. Post-ghastly sickness analysis and research brought me to this conclusion: excess saliva (yuck) may become thickish and phlegmy (this is making my stomach unhappy) which, since I am unable to expel this grossness, causes me to gag. Which was 80% of my problem the Friday before last. I also read that some ALS patients use amitriptyline to control saliva, so I took a dose that evening. My mouth was unbelievably dry when I woke up the next morning BUT not once did I have the throat tickle that always made me cough, choke, then gag. And today, 10 days later, I am still dry mouthed and tickle free.



No fair

On Monday night a beautiful young woman lost her life in a tragic accident. The boat she was in hit a channel marker and she was thrown from the boat and drowned. The other people on the boat, including her fiancé, were hurt, some critically.

The young woman was a friend of Becky's. I met her at the cornhole tournament that Becky hosted last month, she was one of the winning team. Outgoing, friendly, beautiful, bubbling with life and excited about her upcoming wedding, this young woman had a spirit that matched her lovely smile. And in a flash, an ugly twist of fate, she's gone.

I don't know why her death is haunting me so. In the last several years I've known quite a few people who died, almost all of them from this idiot disease and, while it is troubling it is not unexpected. For someone to be taken away so soon, so horribly, someone who had so much life, so much promise... it's just not fair. Not fair at all.


At the end of April -- almost 3 months ago -- I submitted paperwork for the long-term care insurance policy I have with UNUM. At this writing I still have yet to be approved for benefits. Why? Because they have not yet received the medical records from the ALS clinic. The UNUM representative I spoke with told me SHE was told the records were mailed on June 21 but still hadn't been received, and her follow-up phone calls have not been returned. When I was at the clinic June 28 I paid for and got a copy of my records which Lynne faxed to UNUM several days later. I was told they never received the fax. I made a couple follow-up phone calls of my own and have not received any satisfactory response.

I'm totally fed up and angry. But for this one glitch I would be able to engage additional help during the week; by this time my elimination period would almost be over. It is highly irritating.



Yesterday evening, during a cookout with neighbors, the mosquitoes were plaguing everyone something fierce. The neighbors' youngest son was a prime target; his little legs were covered with bites. One person, however, remained unmolested. A solitary mosquito landed on her right arm but did not bite. She looked on calmly as her neighbors swatted and smacked themselves, wondering why she was not an object of mosquito desire.

She took the last sip of her drink and had a thought -- perhaps the mosquitoes were not attracted to her because they did not like the way she tasted. Tonic water is the beverage of choice most days because it alleviates leg cramps AND the bubbles make it easier to swallow. And what is in tonic water? Quinine, of course. Bitter, bitter quinine.

After very thorough and exhaustive scientific research (via Google using the search terms "tonic water" and "mosquito") she was satisfied her theory was correct; after all, other people reported similar un-mosquito-y experiences.

Tonic water benefit number three: mosquito repellent.


Note to self

Remember your legs are getting weaker, particularly the right leg. Whenever possible, enlist the aid of someone else in the house when attempting to stand, especially when attempting to stand in the bathroom.

Jenny came by on her way to the beach; she dropped off Stella and helped me with a few things including washing my face. I sat on the toilet (pants up), not facing forward but toward the right so Jenny could more easily reach my face. Washed and dried and moisturized, I moved to stand up but because of my odd positioning my right leg was called on to bear an inordinate amount of my girth and, consequently, collapsed. Fortunately Jenny was nearby and acted quickly, getting me into a sitting position which I was able to maintain while she called her dad to do the heavy lifting. The load was lifted and safely ensconced in the bedsit, end of story.

The remainder of the day I was forced to ask for help whenever I had to stand. I do hope the installation of the Toilevator will eliminate the need for constant attendance and assistance. Believe me, I would be most grateful for additional independence days.


As long as I am plunking, I think I will plunk some euros...

I had the great good fortune to visit Arcachon a few years ago on one of my little hops. It's only natural that I should want to spend some of my retirement in this beautiful little part of the world. What do you think? Will you come visit? Bring your running shoes and we will run along le Bassin, later we will have a salad and wine at an outdoor café. Oysters for dinner, then a meandering walk to look at the charming cottages. It's like a fairy tale...

(The last three images are mine, the others were hijacked.)

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