My Life as a Semicolon ; ): In Search of the New Normal

Sunday, December 19, 2010

In Search of the New Normal

Before my first surgery, I went to see a counselor (who I referred to as "my other head doctor,") to help me deal with all the challenges ahead of me. Hewould talk about the frustration of waiting for the "new normal".
In retrospect, those were relatively simple, innocent times, when the fear of death and/or a stroke were abstract.

Well, on Saturday, I got a day pass from the rehab and had a chance to take the new normal out for a spin.
That meant the opportunity to try out the wheel chair ramp we had built in our garage (running into our family room), as well as the grab bars in the downstairs bathroom, and the hospital bed now in the office.

I'll be living on the ground floor when I first get home()officiall(scheduled for this Tuesday)but hope to be able to manage the stairs wiyhin the next month(with the the help of at-home and out patient therapy.

A lot of figuring out the new normal has to do with reconciling old roles and routines with new limitations. The Father in me wants to be able to play with my sons, help get them ready in the morning, and put them to bed at night -- to be a parent again. I've been away for a long time and can't help feeling like I need to make up for lost time.Wyatt very sweetly said to me,"I wish this hadn't happened to you." Ditto. And I wish this hadn't happe3ned to him.

Late last week I practiced getting up off the floor. In principle it's in. case I fall,but I'm thinking about it more in terms of being able to get on the floor and play.

I want to be able to do that as Husband too. I'd never have made it through all this without Jamie by my side, and I want my return home to be more help than burden. But Jamie and I both have another struggle before us - hers is to help me without overdoing for me; mine is to ask for help when I truly need it but not to let her coddle me. I also need to challenge myself safely and without scaring her half to death, like on Saturday when she turned around to see me standing at the pantry door, looking for chocolate chips (for the cookies the boys and I were making). I should get some level of permission to do things like that at the rehab tomorrow, but we're going to need to make our own rules at home.

Needless to say, it was a successful visit - bet tween the aforementioned cookies, reading a dinosaur book, building Santa's village out of blocks, and decorating the Christmas tree.It was a good test of what I can accomplish sitting down, and further encouragement to get back on my feet.

Then Jamie's sister came over to watch the kids (Thanks, Jen!), and Jamie and I went out to dinner. That was another first - the first time I'd gone out in public in my wheel chair. It was fine, butI know I'm going to be self-conscious about it whenever we do it. I kept thinking people were saluting me. What with my newly shaved head and sutured scalp, I do look like I've been in battle. But I don't deserve that level of tribute or attention.

5 comments :

Anonymous9:10 PM, December 19, 2010
You (and Jamie) have the admiration and respect of all who have been witness to the amazing strength and will you haves showed us all.

Rachel C.
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Anonymous9:21 PM, December 19, 2010
Standing at the pantry looking for cookies sounds like it might be good exercise!

Ahh! What do I know about it? Sounds like a good time was had by all. You know Jamie isn't having fun unless she has something to fret about! ;)

Glad you'll be home soon.

-Doug
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Anonymous10:19 PM, December 19, 2010
Like hell you haven't been in a battle! That brain invader forced a peaceful man to take on the fight of his life. That counts, Ken!

I like that the new normal includes excursions to the pantry for chocolate chips and the chance to make cookies with your kids. That sounds like a great kind of normal to me. And, yeah, you'll have plenty of motivation to keep doing the hard work of out-patient PT to help you get back on your feet. :)

What kind of pre-Christmas help do you need? That question is directed at both of you . . . I LOVE to wrap packages, bake cookies, do targeted xmas shopping . . . what do you need?

--Amy & Ed
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Anonymous8:12 AM, December 20, 2010
Dear Ken,
Sorry we missed trimming the tree with you on Saturday. We would have loved to have been there. I know this is something that you have probably thought about in detail, but I am wondering if you have considered writing a book about your experiences and insights during your inspiring recovery. I can envision that with your wonderful writing ability you could write an best seller. I mean it. Your strength, ingenuity, humor and love that has helped you along in during these past months would be a welcome and inspiring read. ...or Movie.
-Shane
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Rosafaerie9:57 AM, December 20, 2010
Sounds like a wonderful day! We're looking forward to seeing you back in your own home. Sorry we couldn't make it Saturday either...out of town for early Christmas with the Browns. And I've got bronchitis anyway so no one wants to be around me coughing my fool head off. Jason's on vacation next week so I hope we can stop in for a visit...keeping fingers crossed that we'll be purged of all viruses by then :)

I'm sure it will take some adjusting when you move home, but, really, "normal" is constantly changing all the time...yours more so than some, of course. Just being with your family will keep you motivated and inspired.

Love you guys! See you soon! Oh...and let me know what I can bring over next week for food! Maybe some enchiladas and black bean salad to contrast with all the Christmas goodies?
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My Life as a Semicolon ; )

Sunday, December 19, 2010

In Search of the New Normal

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Activities	Immediately after Stroke(early Oct. 2010)	When I left MGH/arrived at NERHP(mid-Oct. 2010)	When I left the rehab (12/21/10)	Now (02/21/13)
Eating	I started with an an NG-Tube, which was inserted during my original surgery and soon was given a G-tube, during a separate surgery. My primary source of nutrients was called Jevity, which is not as much fun or tastyas it sounds.I actually have no idea what it tastes like, but it looks and smells like a combination of coffee milk and Yoo-Hoo	Still on an all-liquid diet of Jevity through my feeding tube.	Early in my stay at the rehab, I took a Modified-Barium-Swallow test with my speech therapist in order to confirm that the stroke had not damaged my ability to swallow or my gag reflex. After passing the test, I was allowed to eat solid food, though even that came in stages. For instance, I rememberthe first group of foods were "mechanical soft" and I drank "nectar thick" liquids"	I try to eat a healthy diet and have no specific restrictions.
Therapy	approximately one hour a day of OT and PT.	approximately three hours a day of OT, PT, and speech therapy (speech encompasses talking, drinking, eating, and cognitive functions.	approximately three hours a day of OT and PT. I was discharged from speech therapy relatively early on, once it was determined that my cognition, speech, and swallowing were relatively fine	After leaving inpatient at the rehab, I began outpatient OT and PT twice a week and also had in-home OT and PT twice a week. after receiving the results of my neuropsych evaluation, speech therapy was added back in. I then had to eliminate some therapy in order to free up time for my return to work. In 2012 I did no formal OT or PT but tried other forms of therapy like chiropractic and Feldenkrais. I am also going to try craniosacral therapy. I've regularly seen a psychologist throughout my recovery.
Walking	None	None	walking with close supervision and the support of an AFO brace and quad cane	walking independently, with the support of a KAFO brace and a straight cane, now equipped with a standing tip(which I love). I periodically walk without cane or brace, when the occasion calls for it (like carrying something).
Toileting	during my original surgery, I was given a Foley cath– an internal catheter – which remained in place for quite a while. It think after not producing enough in my catheter bag, I was given another internal catheter – this time a Straight cath. They can only stay in for relatively short time,I think, so I was granted the opportunity to try aTexas Condom Cath. After that proved unsuccessful, I was given what was simply called a Urinal, but which I referred to as my "pee jug"	Urinal	urinal at night, toilet during the day	all toilet all the time; no assistance required
Bathing	bed/sponge baths	bed/sponge baths,though after about two weeks inpatient at the rehab, I started showering periodically with assistance	showering, seated, with minimal assistance	showering, seated, with no assistance, standing with some assistance
Dressing	maximum assistance required	maximum assistance required	some assistance required	no assistance required, except with some jackets and zippers
Balance	could not stand or sit up straight	could not stand or sit up straight	could stand and sit for short periods of time	can stand and sit without assistance for relatively long stretches of time
Left Leg/Foot	no movement	no movement	large movement from hip and quad.weak in hamstring. no movement in ankle or toes	still weak in hamstring, but much stronger in leg overall. Some ankle motion, but nothing in my toes.
Left Arm/Hand	no movement	no movement	large movements from the shoulder and bicep. Some hand grip. No finger extension.	similar to when I left the rehab, though large movements are easier and my grip is a bit stronger.
Speech	Little and/or slurred	slurred Jamie often remarked that I had a "flat affect."	relatively clear.	most people say they don't notice any issues with my speech, but I still notice some slurring when I raise my voice (which, of course, never happens in a house with two young boys) or when I try to string together too many thoughts or syllables at once; I can't seem to whistle like I used to, my pitch is a little off when singing; and I can't curl my tongue anymore.
Pain	negligible	negligible	negligible	headaches periodically, but no general pain
Aneurysm	primarily removed	no change	no change	as far as we know, no change
Seizures	gone	no change	no change	gran-Mal seizure while sleeping, in August 2012.
Skull	a portion was missing (on purpose)	no change	cranioplasty completed	scars are healing well. There are some "irregularities" in how the plates have healed, especially with the plastic skull flap. That's not unusual. Sensation is returning to areas of my scalp where nerves were severed during surgeries. Sometimes this can cause odd sensations, but not pain per se. I do have some pain when yawning.
Medication	antiseizure meds,Heparin anti-clotting shots to my belly (which is standard for bedridden patients), beta blocker for high blood pressure, though, that was primarily a reaction to my heart episode, not an actual issue with high blood pressure; Lipitor to lower cholesterol, though, that also was prescribed primarily in reaction to my heart episode and the stroke. Baclofen for spasticity.	no change	no change	I'm no longer on the beta blocker, since my blood pressure has stabilized. I've also reduced my Lipitor intake, because my liver enzymes were not reacting well with it.Since I am no longer in bed as much, I did not need the Heparin shots once I returned home. Anti-seizure meds were increased after my 2012 seizure. Lexapro for mild depression.
Heart	some sort of heart episode had occurred, but no direct cause – other than brain surgery – was identified	no change	chemical stress test did not identify any long-term damage caused by heart attack or risk factors for future concerns	no change
Falls	None, though if I had been left alone, I certainly would've fallen over	same	no falls during my time at the rehab, though, I had a couple close calls during transfers from my wheelchair, or when trying to move too quickly	I've had a few falls at home, up through 2012, but have also regularly practiced getting up from the floor during PT. I have to be cautious but not fear falls
Wheelchair	the only way I could be moved was by wheelchair or gurney, primarily gurney	same	I did use the wheelchair for "long"trips down the hall.	When first at home, the wheelchair was the easiest way to get me around or in and out of the house and car. I no longer use it except on excursions that would require a great deal of walking, such as at the airport.
Stairs	None	same	some use of "practice stairs." And actual stairwells, always with supervision	when first at home, I stayed on the ground floor of the house at all times, but now go upstairs to sleep and shower, as well as down to the basement for exercise. I still mostly go one step at a time (as opposed to stepping "reciprocally"), but only need supervision when there is no railing on my right side – up or down. Regularly exercise at work by reciprocally climbing three flights of stairs.
Driving	none	same	same	Car modified for one-handed operation, I got my license back at the end of January 2013.
Sleep	this fight, the noise of the hospital, I generally slept okay. I was pretty exhausted and at times still groggy from anesthesia.	same	I went through some periods of sleeplessness due to noise in the rehab and was given some sleeping aids, which helped.	I've been sleeping pretty well, aside from typical interruptions of young children. Diagnosed with mild sleep apnea in February 2013.
Work	none	none	none	From 7/11 through 12/11, ramped up from part-time at home to fulltime from home . From 1/12-6/12, ramped up from part-time in the office to fulltime in the office, which continues.
Mood	upset by my circumstances but generally positive	same	same	I think working has given me a boost to a certain extent. I try to be positive, though certainly get frustrated at times. I'm also on Lexapro, in part because a study showed a connection between SSRIs and neurological healing. At worst, the study found that patients were less depressed and more motivated to work toward recovery.
Exercise	Little to none	same	I considered all therapy to be exercise.	Again, therapy has been exercise. Without formal therapy, I do regular stretching and have recently added a treadmill to our inventory of equipment. This will hopefully help improve my stamina in preparation for time in the office, as well as help me focus on walking pace and form. I've also been using ourWii balance board, which includes fun, but safe ways for me to put my balance to the test.
Tactile sensitivity	slightly diminished– if tested subtly, for instance, with a Q-tip, I could not easily identify which finger on my left hand was being touched.	same	improved	relatively normal, though I am somewhat hypersensitive to heat and cold.