Updates on David

It’s been almost three months with David (and the dog) living 4 to 5 days a week in Seaside. He’s adjusted to the routine pretty well (the dog that is). David and I still have a ways to go yet.

David still goes to the Kernes Pool for therapy twice a week (I take him usually) and home therapy three times a week. He is trying to make progress, but it’s very slow and not encouraging to him. We see the progress more than he does and it’s hard to convince him that it’s happening. He is trying to get things done at his house in Seaside, but still has to depend on others a lot so that makes it difficult for him.

And then there’s the problems that come with reduced physical activity. When David is not moving around a lot the affects build on themselves and make everyday activities harder. I’ll skip the details but it’s not fun for him, we’ll say.

His doctors are all giving him good attention, of course, and trying some adjustments to his medications to help increase his stamina to do better at physical therapy. Mixed results so far, but they have some new additions starting next week that they think will be helpful. Changing has its risks so we’ll be on the lookout for new side affects.

More good news – David is making progress and doing more on his own. A few months ago I would not have considered leaving him on his own even for an hour (that’s the overly controlling part I suppose) but recently he has been fine at home for 4 hours or more alone and able to get around by himself.

More news in a few weeks….

Drew

David is doing ‘okay’ these day now that he’s been home from the hospital just over one year. The news is a little slower these days but I will try to do a better job of updating the blog, even if it’s just once a month or so.

Where are we now that one year has passed? Well, I think the answer is different for each of the two of us.

From the beginning, people told me that my relationship with David, and his with me, would change, no matter what the outcome or progress in his rehabilitation. That is certainly true. I suppose I ignored that admonition too long and did not fully understand his need for independence and restoration of his self image as a complete and separate functioning person.

I can never truly understand the frustration he feels with the scope and speed (or lack of it) of his recovery. My help, no matter how well intentioned, can’t make his arm or hand work any faster or better. He is dependent on me, or someone, for just about everything and that dependence is understandably very difficult. I know it would bother me also. I try to make it easy for him, and in doing so make it hard for him to try to do for himself.

He is not a kid, and I am not his Mother, and unfortunately I can’t help that it seems that way to him. A lot. I do what I do, and say what I say, because I think it’s the right thing to do. When he feels he is not making progress and I am not there pushing him to work his arm he feels I am not doing enough. When I do push him, I am doing too much.

His need to be an adult individual again with more independence and self reliance, without me there 2 feet away 24/7, has led him to move to his house in Seaside for 5 days/nights a week. Seth and Dick are usually around there to lend a hand, but not as much as I tend to do. He needs that increased self reliance and I am glad it helps him.

Depending on whether his is mad at me for one thing or another (some times deserved, some times not) he calls this a divorce, a separation or just a vacation. We’ll see where it goes, but for now it is what it is and we’re not packing up any boxes and counting out the table napkins.

But things might not be quite the same again. What is ‘the same’ anyway?

We’re still together at home on the weekend, and I take him to his appointments or therapy during the week for the 3 weeks out of 4 when I am here in California. We’re out to dinner a few times a week, or to Costco, or someone’s house, or recently a charity event for the pool. It’s been a month so far like this and we’re getting used to it. Sort of. There are many challenges in both our lives and we’ll work through them, together and separately.

His physical therapy work continues with 5 sessions a week, two in the pool and three ‘dry’ workouts. Some changes in his medicines have helped him feel a bit better too, although the doctor has him out of airplanes for now as a precaution. My biggest concerns remain his overall health and emotional well being and his not falling down. He’s good about knowing when he feels strong, or not, and after pool therapy(very relaxing) he is always careful when walking. There I go again being parental.

I think about his bicycle story (when he first got a 10-speed bike and the accident going down the hill and he did not know how to make the brakes work – then finally figured them out front wheel first) and realize what a completely neurotic parent I would be (and probably seem to be to him even now). I have been that way for the 18 years we’ve been together (as he reminds me with many examples) so he’ll either get used to it or not.

Among other things his being in Seaside helps him get a handle on getting some things done at the Seaside house since his parents passed away (four years now last month).

Once I get his internet and phone working again at Seaside he will be more reachable directly, for now if you have his cell number it’s the best way to reach him if you need him during the week. He does get his emails at the store when he is there a few days a week on his new schedule. On the weekends he is home here and has his computer here still set up.

Thanks for listening….

Okay, so it has been almost two weeks but a lot (good) has been going on and all of the sudden here I am again.

Between the meds, the oxygen, and lots of attention, David is breathing a lot easier. The post nasal crap, as I call it, has subsided for now and the third in a series of chest x-rays confirms his lungs are now almost completely cleared up. His oxygenation is still not at 98%, as a healthy non-smoker would measure, but it’s getting better. A side affect of the stroke and the left paralysis is that the muscles in his chest that expand his lungs on that side just don’t do it as well as the right side. That’s part of the reason that his left side is where the pneumonia kicked in.

David still uses the oxygen most nights, since his night oxygen levels seem to go down (sleeping, lying on his side, etc) but we’ll be adding this to his PT plan now to try to build up his breathing more.

This week was the start of a SECOND pool therapy day, so we’re up to 5.5 hours a week of PT and related activity. That’s double where he was in the hospital. It’s possible we’ll try to add another 2 hours a week to that in the next month. The pool therapy is very productive, but the heat of the water takes a lot of stamina and he has to rest at least 2x the therapy time afterwards.

Went to the orthotics lab today and got his brace adjusted to make his ‘gait’ a little smoother. David is very focused on more mobility and leg strength. In the pool the buoyancy helps him exercise his balance and ankle strength with walking exercises without the brace.

We’ve got almost 30 days with no doctor visits planned so it’s a vacation of sorts. Time for me to go get my physical in the meantime and to fit in another workweek in New York at the start of the month. Luckily my trip in May was uneventful, having just missed a snowstorm in Denver.

David did manage to get me into the garden center and then into the yard with me this last week and we got all the vegetables, herbs, and flowers into the planters in the yard. We’re waiting for ‘one more’ rainstorm before the weed trimmer comes out for the jungle in the front yard and the hillsides. David is determined to get the front yard planted this season with lavender and a few olive trees so that it looks like people live here. Has it really been 7 years since we dug up the yard for the new septic tank? Wow. How time flies. Makes two weeks seem like nothing….

Until next time.

Earlier this week David’s lung crap problem went from bad to worse, and back to slightly better tonight. The coughing, hacking and wheezing got worse and the phlegm got darker. Yuck. More tests on Thursday and another chest x-ray. This time there it was, in the bottom of his left lung. Temperature went through the roof. As if he did not have enough to deal with.

Thankfully David has some pretty dedicated doctors. He’s on a antibiotic cocktail, the nebulizer to get the bronchial medicines into his lungs, and now the oxygen concentrator to feed him pure oxygen to make it easier for him to breath while his lungs heal. The temperature is back to normal and the hacking is down to about once an hour. The goo still has some color so it will be a few days before we’re sure that everything is headed back to normal.

It’;s a good thing that David needs to have noise in the room for him to sleep since the oxygen machine sounds like a noisy air conditioner and a sump pump going at the same time. ZZZ thump ZZZ thump ZZZ thump, just in case you want to get the real feel of it. He has little canisters to take along with him to the store (we can refill them at home from the machine) so we’re a little more limited than before, but we’ll manage. The unit has a 50ft hose so I think I will be moving it to the Foyer and maybe sleep a little better myself. Once the lung thing is fixed he can stop the oxygen therapy hopefully.

The doctor canceled the pool therapy today but he was still able to do his home PT and exercise his arm a bit. He did the bike, and walked around outside in the warm sun a bit. Getting vertical is an important part of the lung therapy also. The pool is the highlight of David’s week so with any luck he can to the pool next week on Friday.

Thanks for keeping up.

Drew

For about 8 years, or so, Tuesday has been “David’s day off” to do stuff around the house, go run errands, or just do nothing. For him, doing nothing on a Tuesday usually meant doing something in the kitchen and us ending up with something great for dinner or dessert. David is pretty frustrated not being able to do that the way he would like to anymore.

So he sleeps on Tuesday afternoons waiting for me to finish my work at 3 and then maybe run errands in town or grab a bit to eat at The Cookhouse or Jose’s. That’s what he’s doing now while I write this.

Still haven’t solved the runny nose/lung crap problem. He’s been on every medicine known to man or ever advertised on TV. We went to the Ear Nose Throat doctor Monday to see if it was any real underlying problem. The sinus scan showed there was nothing there. That just confirms David’s theory that when the did the brain surgery they took his out and forgot to put it back in, The doctor did not have any solution for David other than to suggest ANOTHER over the counter spray that MIGHT do the trick.

In the meantime I am up every few hours turning him and moving him up onto the pillows so his head is elevated. It takes about two hours for him to slide down and start choking on his own snot. Sort of nature’s alarm clock. We’ll keep trying things until we find the right answer. (as long as it’s not me he’s allergic to).

Drew

David wanted me to make sure that no one thinks this has anything to do with him eating half a box of Oreos. I suppose that means it really does.

Actually it has more to do with his moving two toes on his left foot. Doesn’t sound like much but it’s a lot. Early on one of the therapists said that its common with AVM Bleed strokes that the patient does not get back the toes, but they are moving so that is encouraging. Having the new leg brace makes walking a little easier for him, and the more he moves around the better. He is known to answer ‘vertical’ when asked how he is these days.

This was the second week with three therapy sessions. Friday is always a busy day with both the pool in the morning and PT in the afternoon so by now he is completely exhausted (in the good way). Our trip to the doctor last week was moderately eventful in that he prescribed an electronic unit for his arm, we’ll just have to figure out which one to buy and then get a schedule going to use it.

We’ll be in the store all weekend which is sure to keep him busy!

Drew

I was sitting down to finally update the blog after a week or so and (of course) the dog wants to sit in my lap and as I was explaining to the dog why he had to leave me alone for a few minutes (don’t you talk to your dog?) David said all I needed to write for the week was “Same S$*#, Different Day”.

Well, it’s not exactly like that.

Truth is that a lot has gone on since the last update. Last week I was in New York for work and, since I had not been there for a while, there was a lot to do last weekend to get ready (uhh, taxes). Friday night before I left we went to a fabulous flute and guitar concert in Monterey where a friends adult daughter played masterfully. Wow.

It was pretty hectic up to the last minute before I left Monday morning.

David had help while I was gone and things went pretty smoothly considering all the scheduling for PT, therapy swim and getting wired up for the new 30 day heart monitor. The doctor is still trying to figure out what makes his pulse go all over the place some times.

On the topic of racing pulses, on my trip back home Friday night the plane made a ‘sudden’ unscheduled approach and landing in Lincoln, Nebraska due to a suspected fire in the avionics bay under the cockpit. Oops. After 5 hours in famous Lincoln, we got a new plane and I ended up in the hotel in Denver overnight for only a few hours sleep before getting back up for the 6am flight to SFO. Yawn. 12 minute connection in SFO and made it back to MRY by 9am though. Yawn again.

The rainy weather has come, gone, and come back again. The bottom line is that David (who has always been very susceptible to allergies, asthma and all things bronchial) got the worst of the changing weather this last week. He is doing better today, thankfully, but the past few days have been pretty hard for him to breathe. Now I have it too.

Sniffle. Great.

Last year about this time David had just been moved to the hospital in Santa Clara and had not started therapy there quite yet.

The physical therapy on his arm is just starting to make some noticeable difference. Yesterday he was able to lift his arm to his face with not as much shoulder movement as actual brain to arm control. Yea! We are doubling the PT starting this week, so it will be 2 hours twice a week with the assistant doing exercises focused on his arm. The rest of the week its up to him to try to move his arm as much as possible.

Thursday is another trip to the Physiatrist (rehabilitation doctor) to check in so we’ll know more then.

Thanks for keeping up.

Drew

Finally a little sunny weather. David has been feeling better this week and got plenty of exercise and a really productive ‘full session’ visit to the therapy pool today.

His doctors are talking to each other to figure out if one or more of his medicines are causing the situation where the hair on his legs is ‘hyper sensitive’. It’s just one of the things still bothering him.,

With the nice weather I decided to try to see if the wheelchair, totally disassembled, would fit in the trunk of the roadster. It’s amazing that if actually does fit, Well almost. David has to ride with one of the wheels on his lap and the trunk is packed like a sardine can. It was worth the effort. I feel sort of like a Marine disassembling and reassembling a rifle in 15 seconds with my eyes closed. Now that the rain is over we can take off the hardtop next weekend and enjoy having the top down this summer! It’s a lot easier for David to get into the roadster than climbing into the truck, assuming we don’t need to take much more than some Kleenex along with us that is.

Drew

I am happy to say that David is still making progress (no fooling).

In France April Fools day is called Poison d;Avril. the tradition is to have little chocolates shaped like sardines as a token of the day (it’s pronounced pwah son, the French word for fish).

The weekly exercise is starting to help a little. Made it to the pool again this week (oops, had the time wrong and only got part of the session in). Next week will be better. Still working on getting the medicines adjusted to just the right balance for handling the blood pressure, nerve pain and seizures while trying not to be too sleepy.

David has had a few episodes where his blood pressure and pulse rate has spiked for no apparent reason, so this week he had a monitor wired up to see if they could catch it happening. Of course it didn’t happen when the thing was hooked up. Sort of like taking the car in to the shop and of course it runs fine then. The good thing is that there was no problem, the bad thing of course is that there was nothing that happened that they could then look at.

Friday we were able to get to the new neurologist to try to understand some of the neurpathic pain that David is having and try to find some solutions, even if it means changing some of his medicines around. Today we are increasing one of his current medicines and possibly changing one of them to one of those medicines you hear on TV every 20 minutes (Lyrica). It is kind of funny being able to tell the doctor what the side affects are. I guess the advertising works. The sleepiness is my main concern, but if changing helps him get his arm working we can figure out how to recover from the sleepiness later.

Tonight was fresh made pasta and meat sauce. It was a mess, but some friends were over and did a lot of the work and cleanup, David really had a good time directing the action which I know he enjoyed.

Happy Easter/Passover to everyone! (or Eastover as David refers to it).

Drew

Lots of good stuff going on this week.

Monday was the return visit to the sports medicine doctor to follow up on David’s foot and leg muscular and nerve pains. David has a list of exercises to loosen up his foot, together with a special night splint.

On Tuesday David returned to the therapy pool for a second evaluation and now has a weekly schedule. The sessions in the warm water with the therapist really helps his arm flexibility and ankle strengthening. I know it must really feel good since he hates being in the water normally!

Wednesday was David’s weekly exercise session which is also helping him to loosen up his arm. It also really helps to have someone else that is here on a schedule to make sure the exercise gets done.

Today was the fitting of the NEW leg brace. This one is graphite and much less irritating to his foot, since there is less of it surrounding his ankle. The design is flexible along the botton of the foot, then a single piece up the left side to the part that holds on to his shin and calf. It bends when he walks but keeps his ankle straight. It also fits a lot more easily in his shoe and can be put on in one action with the shoe, not a two part process. With his new velcro shoes we can work on him putting on his own shoes, or at least making it a lot easier for me to do it when he wants to get out of bed.

The old brace did its job, but was designed for less flexibility. David pretty much hated it. He is looking forward to tossing it off the Bixby bridge.

Our friend the massage student has been practicing on David a few times last week and that has been a wonderful addition to the therapy for his back, arms and legs. Probably more addicting than any medicine he is taking.

That’s the good news of the week. Next week we go to the new neurologist to see about his leg and arm and we are hopeful that he will be able to prescribe a stimulator for David’s arm and leg that will help him get things moving again soon.

Thanks for keeping in touch!

Drew