Lost

I started therapy last year and after 5 months I am showing no signs of improvement.  Bob agrees and is equally frustrated. In fact, he thinks I have regressed.   At the core, my walking is no faster nor am I taking the desired big steps.  It occurred to me today during my physical therapy session that I could spend every day all day doing therapy but I choose to live my life. For example, I start with stretching and core work before I even get out of bed then during the day balance exercises, sit-to-stand emphasis on left leg strengthening, and walking, recumbent bike ride for the aerobics. And then at night more core work.  The question is do I focus on the multi-day ,multi-hour unsupervised therapy at the expense of my other activities while I am still physically able, hence, the title of the blog. The answer is what I’m wrestling with. I tend to prioritize things I am interested in doing such as reading, watching TV, volunteer work, Internet, etc. I have to resolve this question in my mind

Reality

“I’m struggling, not suffering”

These are the words spoken by Alice Howland in Still Alice.

They completely resonated with me.  They also are what I often want to say to people who want to know what it’s like to live as a stroke survivor.  I’ve covered this ground before, yet, the movie and book resonated so deeply I thought it warranted repeating.  Surviving a stroke is who I am, how I define myself and how others will continue to define me. BUT, I am so much more.  I’m a wife, a sister, a daughter, an aunt and a friend.  I’m an active participant in society.  I have two volunteer jobs and my brain works reasonably well. However my body doesn’t allow me to do the things I used to like, such as run, bike, walk, kayak, walk in heels, etc.

Below, I quote a few lines from Lisa Enova, author of Still Alice. She says it so much better than I ever could.

“I know I have people I love dearly. I have things I want to do with my life. There are many moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to who I was once. So, ‘live in the moment’ I tell myself it’s really all I can do”.   

rehab phases

As my therapy winds down until Botox injections later this month, the neuropsychologist asked me how I felt about my accomplishments to date.  I replied:  “I hope that I have not plateaued because I have so much more to do. “ She wanted me to elaborate and I said, “I want to contribute to our family income by returning to a paying part-time job and get better.”

She asked me to think about my progress to date in another way.

Phase I:  When fresh out of the hospital and rehab, your focus had to be on yourself and getting to independence.  You broke this down into steps.

Phase 2: The next phase of your focus turned to your marriage and your family and how to reciprocate the many kindnesses.

Phase 3: In this phase, you are reaching out to the community and trying to help others through volunteer work.

She then asked me:  “What does getting better mean to you?”

My response was:

Working, improving on navigational skills, vision improvement, maintaining a daily home therapy program.

She reiterated that it is a process.  Everyday think about how you will accomplish your goals.

I related this to my former business world.  The CEO at Compaq always clearly communicated our vision and strategic goals to grow our company.  If we weren’t working on projects/tasks everyday towards achieving these goals, we shouldn’t be doing them.

The bottom line is I need to define what’s next and break that down into the tasks associated with accomplishing the next phase.

It is a process. Stay tuned. 

therapy part 2

I’m now over a month into therapy and the therapists are recommending I go into a holding pattern until I get a Botox evaluation and injections. They don’t believe I can progress without this so I’m waiting until the end of January which is when my evaluation is scheduled. The Botox is for my arm and leg and reduces spasticity.    During the first month in therapy I made minor progress.  They conducted six minute walk tests, testing speed and gait length.   I increased the number of steps I take in six minutes by 20%. Not great, but I’ll take it.  I think I’m most proud that I passed the test from floor to standing.  We never practiced it during the first month but when it came to test time, I popped right off the floor.  I attribute this to the excellent training I received in Kansas City several years ago. 

This past week, they discharged me from speech therapy because I met most of my goals, which included:

-         Attention strategies – slow everything down and check work as I go

-        Memory/planning strategies –write things down using phone apps and break projects down in smaller pieces

-        Speech strategies – slow down rate of speech, pause, intonate, and smile when talking will help intonation.  I still need lots of work in this arena it requires constant practice – good thing I like to talk.

Although difficult, I am challenged by this therapy in a good way and look forward to starting again.

I’m 8.5 years stroke survivor and I’m still doing therapy and s look forward to opportunities to get better

There is no such thing as a plateau in my world.

challenged

Nervous, positive, humbled, ready, needy -these are the words that come to mind during my first week of physical, speech and occupational therapy. The outpatient program at TIRR Memorial Hermann is called “challenge” and after one week I know it is aptly named.  We first worked on goals and then started the actual work.  It has been several years since I participated in organized therapy and realize that you can never have enough.  Goals were jointly identified for physical and speech therapy.

For physical therapy:

·        Improve walking speed

·        Improve gait endurance

·        Be able to transfer from floor to standing in the event of a fall.

For speech therapy:

·        improve attention to left visual field using therapies

·        Use memory strategies to improve recall

·        Reduce rate of speech; increase volume

I attend four times per week and generally 3-6 hours each time. 

After my first month, I will report back. I’m now wondering why I ever stopped therapy. It is probably because I thought I had progressed to where I no longer needed therapy; clearly this is not the case.  Bring on the “challenge.”

od friends are ike gold

This week I went to dinner with two friends from high school that I haven’t seen in a very long time.  What was unusual about the evening was all three of us are survivors, one from diabetes and a kidney transplant, one from uterine and breast cancer and me from a stroke--three soldier survivors.  Laughs ensued early because we observed every conversation these days begins with 20 minutes of health updates.   We had snacks and a cocktail at my house and then walked to a neighborhood restaurant for dinner.  Earlier in the week, I practiced the walk with my assistant.  I didn’t want to be a burden to my friends not accustomed to dealing with me. 

I looked up the common expression “Cloud 9” – it means you are having a heavenly experience, as if you were up on a special cloud. I commented to Bob later that evening that walking to a restaurant with friends, at night made me feel that I was on Cloud10.  This ability to walk is 100% attributed to the walker Bob found and purchased in April. It has augmented my life. My point is, find those tools that help you succeed.

friends

In the Sept 21, New York Times, David Brooks writes “Ancient writers from Aristotle to Cicero to Montaigne described friendship as the pre-eminent human institution. You can go without marriage, or justice, or honor, but friendship is indispensable to life. Each friendship, they continued, has positive social effects. Lovers face each other, but friends stand side-by-side, facing the world — often working on its behalf. Aristotle suggested that friendship is the cornerstone of society.”

I took a trip last weekend on my own that ties these thoughts.  My friends invited me for a weekend on the lake, which is great closure for the summer.  While at home in Houston, I spend a lot of time alone so being with my friends helps me remember how to have real conversations, share experiences, ideas, etc.

David Brooks also writes, “Friendship helps people make better judgments. “The reason it felt do good to be with my friends from Austin again is because they know me and bob very well.  They know when   I’m not being sincere and they make me think about areas for improvement.  I really enjoy getting updated on their lives and it makes me realize how in insular I can be because I focus so much on recovery.  For example one friend shared a recent health scare with her son.  I knew nothing about this and felt instantly selfish. 

Another interesting point he wrote that “Middle-aged people have particular problems nurturing friendships and building new ones. They are so busy with work and kids that friendship gets squeezed out.” I have been friends with these women for 30 + years and I’m so thankful they stuck with me.  I’m making new friends in Houston but it is difficult so I relate to this comment.

This trip personifies my ongoing sense of normal. When I am away, I don’t focus or really even think about the stroke.  I just “be”

This blog is a tribute to my friends who have stuck with me all these years through the good and the hard times. Thank you.