Recovery IS a TEAM sport….

I don’t know why that statement is in my head…but it is!  My wife ALWAYS says that to people who are aiding others who are recovering from a stroke. She doesn’t mince words and she tells it like it is…with total honesty.   I like that.  She involved my family in lot of the things I did during my initial recovery.

Would YOU like to participate in YOUR long term goal setting?  Would YOU like to monitor YOUR progress? Would YOU have great satisfaction from that experience?

Following is another post from my wife:

A Great Response

I always say Recovery is a Team Sport.  Every sport requires scheduled practices, specific drills, and a goal.  Successful recovery takes the same discipline.  I suppose the first question is does she want to be on the team? Does she want to recover? Is she willing to work to make it happen?

For me and my husband (11 years post stroke), we first agreed on the goals. I made the practice schedule and the therapists gave us the drills.  I scheduled our exercise time and put it on the calendar. We did not deviate from the schedule. Depending on the day, we had an hour or two to devote to therapy then we always did something fun. Luckily for us, walking was always our main source of fun and connection so post-stroke we always walked (I pushed him in the wheelchair in the beginning).  Walking had a huge effect on his recovery–happy, oxygen to the brain, increased bloodflow, strength.

We were wildly aggressive in our goals and we did not hit a single one BUT we recovered far more than anyone thought we would.  What did this mean? We became much closer as a couple. We were in agreement about what we wanted to accomplish and we were in it together.  Win win win.

If you can’t be there for all the exercises, is there someone who can join the team? Is there someone who can commit to certain days and helping with certain exercises at a certain time?  Can your little boy be involved with some of the work? LIke, can he sit on her foot when she is working on leg raises? Silly things like that?

The great thing is that recovery is always possible–as long as you are willing to put in the work. Our brains are amazing and our bodies are resilient. Working on recovery can be slow but so what? Make it fun, include friends, family, music, anything to keep the momentum.  Good luck.

Will This Lead To Recovery from Stroke??

Every 40 seconds, someone in the United States suffers a stroke and available therapies, such as clot busting drugs or clot removal devices, are focused on limiting the extent of brain damage. Now, research from the University of Pittsburgh School of Medicine and the VA Pittsburgh Healthcare System shows that a brain protein called UCHL1 may be critical to how nerve cells repair themselves after stroke damage. The research, conducted in animal models, could aid in the development of therapies that enhance stroke recovery by improving the underlying biological repair process.

“Even though traditional stroke therapies are very effective when available, the treatment must be started in the first hours after a stroke and most patients are not able to get these treatments. So there is a clear need for new approaches that can improve recovery days after a patient experiences a stroke,” said co-senior author Steven Graham, M.D., Ph.D., professor of neurology at Pitt’s School of Medicine, and associate chief of staff for research at VA Pittsburgh. “We think we have identified a protein that is at the root of how the brain recovers from stroke, making it an attractive target for developing drugs that help improve recovery.”

UCHL1 is an enzyme that is highly active in the brain and plays a role in clearing away abnormal proteins. Mutations in the gene coding for UCHL1 have been thought to cause motor function deficits in humans. Previous research from Graham’s lab had provided some hints as to UCHL1’s function, showing that cyclopentenone prostaglandins (CyPgs) – fatty acid molecules – released in nerve cells after a stroke bind to UCHL1 and impair its function.

Graham teamed up with Feng Zhang, Ph.D., an assistant professor of neurology at Pitt’s School of Medicine and a co-senior author on the current study published in the Proceedings of the National Academy of Sciences, to tease out the exact role of UCHL1 in stroke and to determine if it could be a viable drug target.

Mouse Model

The researchers created a mouse model in which they inserted an altered version of the UCHL1 gene that was resistant to the effects of the CyPgs. They then surgically modelled the effect of a stroke in both genetically engineered and normal mice to compare how the nerve cells recovered.

Preventing CyPgs from inhibiting UCHL1 decreased the amount of injury to the axons after stroke when compared to normal mice. Axons – the long cables projecting outward from the center of the nerve cell – are needed to carry electrical signals and connect to other neurons and make up the bulk of the ‘white matter’ in the brain.

Further experiments showed that keeping UCHL1 active after a stroke helped preserve the function of neurons and brain tissue by activating cellular repair mechanisms that quickly cleaned up damaged proteins, preventing further nerve cell loss. The mice with the resistant form of UCHL1 also had improved recovery of waking, balance and other motor functions.

“While most stroke therapies focus on preventing neuronal death, preserving axonal integrity and decreasing white matter injury could be equally important for improved recovery,” said Graham, who also is a neurologist at the UPMC Stroke Institute. “UCHL1 is a central player in that process.”

New Efforts

Graham and his colleagues are now engaged in efforts to identify new drugs that could prevent CyPgs from binding to UCHL1 or to replace damaged UCHL1 proteins with a derivative that can be given intravenously.

First authors on the study were Hao Liu, M.D., Ph.D., and Nadya Povysheva, Ph.D., both from Pitt’s School of Medicine.

Additional authors on the study included Marie E. Rose, Zhiping Mi, Ph.D., Joseph S. Banton, Wenjin Li, Ph.D., Fenghua Chen, Ph.D., Daniel P. Reay, and Germán Barrionuevo, M.D., all of Pitt.

The study was funded by National Institutes of Health grant 2R01NS037459-14A1.

 

Hello this is ______. How may I help you?

I cringe when ever I hear those words!

I think it was from all those times calling HP and all those companies supplying support to the PC platform.  Unfortunalely, I never could understand what they were saying.  It wasn’t THEIR fault,  but it was hard and very difficult to deal with.  The calls were frustrating to me: I had to keep asking them to repeat.  I am sure it was frustrating for them…also.  When I heard a few years that Apple Computer had a total US call center, I went with Apple…and I haven’t looked back.

There is one PC program I still use: Quicken.  I even recently bought a new PC just to run that!  I have been using Quicken for years (since 1989), but never had a problem.  That changed last year.

I used to be able to figure things out.  With the stroke, that changed completely.  Luckily for me, I still try to figure problems out. But when I get stuck, I call the help line.   So far, I placed 3 calls over the past year.  The first 2 were easy solutions that my wife could answer..I just didn’t ask her.

The call today was different

I  won’t bother you with the details, but I spoke to a girl from Guatemala…and I could only detect a very slight accent. I asked her how long she worked there…she told me only a few months.

When the first thing didn’t work, she told me she can fix it, but it will take awhile.   She could tell I was super happy, because I gladly said YES.  She had me looking for things (she didn’t tell me why each thing was important) and told me exactly where to look.  When I didn’t understand (a normal occurrence for me) she didn’t get mad…she just said it in a different way.  Isn’t this the kind of call you always wanted?

When she was done (in 45 minutes) she asked me if there is anything else she can do.  I wanted to  think of something just to see how she handled it…but I told here she did a great job.

Quicken is a fabulous company and they truly care about their customers. Here is what they sent to me after the call:

Quicken offered excellent help and I will tell anyone who will listen. HP and all those other companies can learn something from this!!!!

Can you explain what HE does??

Frustrating!!!!  I ran into Kevin the other day.  We first met when he and I started going to National Speaker Association meetings.  We both completed the number of paid engagements we needed to join and we went out for coffee to talk about our experience in the process.  I felt I had a complete understanding of what he did.

A few years ago, he put on a presentation of what he was doing to get ahead.  It was so compelling, I began the same process.  Kevin has earned a CSP…only a few have this certification.  Kevin is among the top speakers in the industry.

So why am I telling you this?

My wife saw me say hello to Kevin and later, asked me how I knew Kevin.  I quickly answered “he is in the NSA with me.” But when my wife asked me what he did, I could’t answer.  I knew exactly what he did… and I could picture what he did…I just couldn’t articulate it.

I guess the same thing goes on in my mind when I try to say what I do.   I know it… but I can’t explain it.

Frustrating is the word that comes to mind..but I can’t do anything to change that. So to me, everything is fantastic.  Just don’t ask me open ended questions..and I will be fine.

START Now!!!!!

My Wife Jill, wrote another note to a fellow caregiver…and she didn’t mince words….  Just reading this makes me proud of Jill!

Your question seems to be the most common question among caregivers. Disappointment and frustration mixed with fear and loss often creates an environment where all parties are stuck, unable to move forward. It is an awful place to be.

I have been my husband’s caregiver for 11 years (massive stroke at age 51). We are extremely blessed that he never even considered not recovering.  Full disclosure: the first few years he was so disconnected from reality that he didn’t really know how bad off he was. It took years for him to understand his situation. The good thing was that we had been working so hard on recovery and had made such progress that when he did understand, he was motivated to keep improving. We regularly meet with survivors and caregivers and offer encouragement and perspective.

That all being said, I am an advocate for strength and goal setting. So here it goes:

There are moments in our lives where we have to look in the mirror and ask ourselves “Who am I really?” More importantly, “Who do I want to be?” Is quitting is better than trying? Is today going to be better than yesterday? Did I teach my kids to quit when things get hard? What are they going to see when they see me, now that things are hard? Is it all just about me or do I care how my actions affect others? Does Poor Me EVER end well? 

How you and your husband answer these kinds of questions will help you chart your course foward. Recovery is a choice, a choice we have had to make every day. We decided together that life was still going to be good, and it is!  It is different, but it is good. Hard, but worth the effort.

Our life changed dramatically in an instant, as has yours. I pray you will take this time together to decide what you new life is going to look like. We only live one day at a time so I encourage you to start with that perspective.  Today we will accomplish _____________. Remember that you are in this together. Together, you can create a beautiful life worth living. Start Now!

Curious…..

I was curious…as I anxiously await to hear about my talk from about 2 weeks ago. Did it go ok?  Did he want me to do more?

The “Pink Card” index was on the low side…45%.  I have been averaging 50-60%.  Maybe it was because many of the people already heard me speak.  OK, now I feel better!

Of the speeches I gave over the 5 years, THIS one was my favorite.  Why?  Because so many things went wrong and I was still able to complete it.  While I couldn’t see the image being projected without looking at the screen (still a problem), I don’t think that affected my talk too much.  At one point, I put this image up:

before I said:

I was a young, healthy, active, non-smoking, non-drinking- mostly non-drinking  – normal cholesterol man, just like this guy!

They still  laughed!

I look forward to talking to my sponsor and seeing what he thought.  I can always IMPROVE.

Aphasia……….

Here is a note that my wife recently wrote for the American Heart Association about aphasia:

Patience, humor, and lots of pointing!! We are 11 years post-stroke and my husband’s language ability has changed dramatically.  He started with only Yes and No and he said those words indiscriminately.  In those early years, we needed patience and strategy.  We started with big picture: person place or thing. We worked our way down to what he wanted to say. It was important to let him try rather than start guessing and talking for him and over him. We made games the whole family could play to help him learn words again. No matter how he was doing, we encouraged him and assured him it would get better.  Yes it was hard and frustrating but we kept at it. After about 4 years, he could put 3 words together.  They may or may not have been the right 3 words or in the right order but…3 words!!

Then he started reading out loud. After about a year of reading out loud (usually reading the exact same text so he could measure his improvement) he started saying sentences. Around the 5-year mark, he was able to say 2-3 short sentences in a row. It was an incredible breakthrough.

He still struggles with speaking. Around the house he is pretty good. It is quiet and no stress so he is relaxed and mostly able to express himself. Outside of the house, we try to keep it simple.  No open ended questions. It is a new normal but it works for us.

Don’t give up!  Giving up is the only guarantee that there will be no progress.

Hurry up…and wait!

It was like this the past few days…hurry up and wait!

We left for our meeting in Denver on Wednesday, because I NEVER want to be late when speaking on the following day. We got to the hotel at 4:30pm and we quickly went to dinner.  We got back to the room at 6:00pm and just relaxed the rest of the night.

We got up at 9:00am, and had an enjoyable breakfast. Our ride wouldn’t be picking us up until 1:30pm, so my wife and I had a truly enjoyable time talking.  It was great to relax while talking with my wife; REALLY talking with my wife was truly memorable.

Then, our ride came and got us to the event at 2:00pm. That is when the fun started. It’s fortunate, I had everything I needed. The presentation was going to be viewed on GOTO Meeting, which mean my sound didn’t work. I DID have my presentation backed up to Powerpoint, so we were ok.

Then we gave our talk (which was fabulous) and we had to get to the airport IMMEDIATELY!   We rushed down the stairs and found 2 other guys waiting for their rides.  Fortunately, my ride came first..and we rushed to the airport. The was a lot of traffic, but the Lyft driver went 90 on some parts of the freeway where there  wasn’t top much traffic.

We got there 30 minutes before my flight boarded.  Not bad. We had TSA Precheck, so we breezed thru the line. We took the train to my gate and we decided to grab a meal before we took off.

Unfortunately, the cashier was new and didn’t know how to ring up my order. We FINALLY got the receipt, and we rushed to our gate. 2 minutes lates, we boarded!

If anything had NOT worked out, we wouldn’t have made our flight.

 

How Did I Do????

I was cleaning out my file and I discovered this sheet of paper:

It was the follow up I did with the audience I addressed.  I just wanted an idea of how it went and if I should be presenting this speech to anyone else.   I reserved the URL; I put in on hold incase I needed to do something after the speech.  I got so many positive reviews and so many names of people who would like to hear a similar message, that I launched my business a week later.  I told my partner, Scott, that I would be leaving his practice.  It was good timing for him, because his practice was exploding!

This is interesting: Back in 2012, I included pens with the hand-out; I didn’t know any better!   I wouldn’t do that today.  I would just hand them my questionnaire and collect them afterwards…like I do now.  I didn’t know it at the time, but most people have pens.

I am still getting 25-60% of the people filling those out.  When I said “go to my website and fill out the form, I got 2-3% of the audience to fill it out; who knew.  I thought the high tech thing would work–nope!!!!

I Am Back!

I Am Back…and ready to change the world!!!

OK, NOT ready to change the entire world…but ready to take on the daily challenges of running a business. I am rested and eager to start.

I just completed fifth my year in business.

I can not believe I have been doing this for over 5 years! It started out giving one speech to    all my friends and has evolved into a full time job.  OK, not really full time job because of me having to nap and because I can’t really speak in full sentences.  If they would only get beyond that….

This is tough for me to get used to…Not being able to communicate properly.  I have an idea, but I just can not put it into words.  You wouldn’t believe how frustrating that is. I read the Wall Street Journal daily, but it is hard for me to stay focused. After reading 2 paragraphs, I am ready to switch stories.

Then if asked about what I just read, I can’t get the words out to describe it. Like I said, is is frustrating.

But what REALLY keeps me going: