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Tuesday, October 11, 2011

Timelines & Predictions

Bob's one year stroke anniversary will be on Oct. 22nd. This impending date has had me, I'll admit, a bit freaked out because of all the talk about "the first year" post-stroke and recovery being difficult if not impossible after that. In some ways it doesn't seem like a year has already passed. In other ways, it seems much longer than that--a lifetime maybe. I don't think I was prepared, back then, for what a long process this recovery would be and still is.

I remember one of the first "predictions" about Bob's recovery came from one of the doctors in ICU who told me, in November, that Bob would be "home, walking and talking and eating, by Christmas."

I actually believed that guy and he was wrong, on all points.

Then, another doctor in December told me "don't get your hopes up" as "he will never walk again."

We are still proving that doctor wrong.

And the doctor in charge at the Acute Rehab Hospital, who told me that Bob would never come home and would have to, sadly, spend "the rest of his life" in a nursing home. Wrong, wrong, wrong again.

And countless therapists, who told me that Bob had had too many "set backs" and got started on rehab too late, because, you know, after that "window" which is the first "three months" or "six months" or "one year" (depending on who was talking at the time) the prognosis is very poor and recovery is unlikely....

Recently, I was browsing an aphasia/stroke website and I ran across a discussion board and was horrified to find that many people on that website were under the impression that if you haven't recovered from aphasia in 2-3 months, you will never recover or improve.... I am glad no told me that.

Because Bob has had, I believe, the greatest overall improvement in his speaking, just this last month. He has said so many complete sentences that, geez, I've lost count.

Also, this week, Bob hit a new record on the rail, 25 times: that's approximately 150 feet that he is walking almost everyday. At Outpatient Rehab he was lucky to do 50 feet, three times a week, on the parallel bars. So much for "hitting the wall"--eh?

Which makes me wonder, why do these doctors and therapists and experts always make predictions? Why are all these timelines handed out as though they are "set in stone"? Because it seems to me that it only discourages people.

So, today, I'm making a vow to myself to no longer get freaked out about timelines. So what if his stroke anniversary is coming up? We still have time and determination to improve.


barbpolan said...

Diane - you are right about predictions being wrong... at my last PT session, my PT told me not to be surprised if my insurance company suddenly canceled my therapy as "no longer being medically necessary" because all the studies show that there is no improvement after 2 years - my 2-year anniversary is Nov 12. There's no way that this is as far as I'll go. I met a drummer who told me that he was still improving 12 years post-stroke. My prediction is that you both will persevere and prove them all wrong.

Anonymous said...

How many times over the years have you seen or heard of people walking, talking, laughing, when the doctors have said "it'll never happen"??? I truely believe it all depends on the perseverence of the patient and their family. If both truely want to improve, want to do the work necessary to improve, and has that mental strength to overcome the hardship, it will happen. The patient may not get back to "what was", but the patient can make vast improvements over the bottom. When doctors make their predictions or express their opinion on what will be, I believe it's based on the "norm", not on what could be. Bob is making the wonderful and amazing improvements because of his hard work, and your insistance that he not give up. It is your strength, as well as his that will defeat the doctors predictions. Keep doing what you are doing, and you'll remain his sweetheart forever. Caring1 (Dan)

Anonymous said...

Diane-I agree whole heartedly with you about the inaccurate and discouraging predictions of the doctors. They seem to forget the power of the human spirit. Bob's spirit and your's are providing the fire needed to keep him improving. Bravo my friend on your new vow to forget about timelines. You have inspired me to do the same. Love to you both. Patricia/Whya

Jenn said...

Bless you and Bob a million, no, a zillion times over! You're both incredible, inspirational people. Truly. Even if you aren't able to see it.
I agree with the beautiful people here who have commented on this post. Hugs to them as well and blessings for continued successes in their lives post stroke. <3