Our good friend, Carey, over at AccordingtoCarey, invited us to guest post for her October 31-day challenge: Surviving Chronic Illness. It's a privilege to share some hard-earned thoughts on the journey with her readers and with you. Sooner or later, you or someone you know will face an unexpected health crisis - this series could help with the process. Check it out and share, share, share! Beckie
If I were to list for you all the people in our life who have faced chronic or life-threatening illness you’d probably start running in the opposite direction. Suffice it to say, we know a few …. including ourselves. The one positive about this is, when meeting people for the first time who are facing a medical diagnosis, our personal story and experience give us some credibility.
There’s nothing more rewarding than being able to pass along knowledge that might help someone on their journey. Through our blog we have the opportunity to connect with people from around the world. We find ourselves repeatedly talking about certain issues that I refer to as my “soapboxes” ….. one of them being advocacy.
ADVOCATE FOR YOUR PATIENT
It’s pretty easy to find yourself overwhelmed in the medical process. There’s not just physical stuff going on, but the emotional side gets kicked around pretty well too. That’s why, as a patient, having an advocate is so very important. NO ONE should EVER be in hospital or attending doctor appts by themselves -- there's just too much room for error in the process ... especially when the patient is struggling physically or mentally, or is in pain. I’d say it’s next to impossible for the patient to advocate for themselves and a second 'ear' is always good when interpreting what the Doctors or other medical professionals might share with you. We often take my sister-in-law along with us to Ken’s neuro appointments. Many times she has been the ‘voice of reason’ for us, both during the appointment by offering pointed questions and later, as we attempted to piece together all the new information that had been offered.
We live in amazing times and most likely the first thing most of us do when handed a medical diagnosis is to RUN to Google, so it may seem trite to remind you of some basics. But utilizing the ‘basics’ will eventually give you a strong foundation for understanding and analyzing everything that may come your way on this journey.
Join an online support group - these can provide a broad over-view (you will need to use the grocery store method: take what you need and leave the rest)
Join a local support group -- these people will have invaluable information
on what type of support is available locally. They’ve ‘been there, done that’
Ask for reading suggestions -- and don’t worry if it all seems like gibberish, it
will eventually begin to make sense. It’s a lot like learning a new language.
ADVOCATE FOR YOURSELF
The patient in your life gets a lot of attention …. as well they should. But if you find yourself in the position of caretaking or advocating, you can’t forget yourself. There have been plenty of articles documenting stories of caretakers who actually pass before their patient. It’s very easy to focus, focus, focus on taking care of everyone else but you. Guess how I know this?
I’m still learning to give myself permission to address my physical and emotional needs. My sister has been such a good example to me in this. Her husband has Frontal Temporal Disease and most of their life together, as they knew it, has disintegrated. She has found ways to nurture her heart and her body that allow her to gather her strength. She gets therapeutic massages for stress, she walks to and from work through all four seasons, she bought a kayak and spends quiet, restful moments on the lake, she surrounds herself with people who are encouragers in word and deed, and when she’s having a really hard day she makes Apple Dumplings. She’s practically world-renowned for those things! She takes care of herself, because no one else can.
I’m learning from her. I also try to remind myself not to hold my breath figuratively. I’m trying not to put ‘life’ on hold as we walk out this process. It’s a really easy thing to do -- put your life on hold. Then you look back and realize you haven’t enjoyed the little, everyday moments that make up a life. I want to fully appreciate those moments -- reading out-loud from my mother-in-law’s journal as we complete yet another holiday round-trip drive, having the patience and time to let my grandkids ‘help’ prepare meals and together, work on a puzzle …. for the 10th time that day , and getting lost in the eyes of our 3-week-old newest grandgirl, knowing therein lies an ocean of love.
Facing down illness is a tough road, full of twists and turns with always challenging and ever changing terrain. The goal is to travel as gracefully as possible. Together, we can help each other do that.
Tuesday, October 8, 2013
Tuesday, October 1, 2013
Whenever I write and post something that is critical and negative about Parkinson's Disease, I run the risk of sounding like I'm whining. To the contrary, I don't believe there is anything more significant to a person with this insidious condition than empathy - identifying with someone who is experiencing the same feelings and frustrations. That's why I write...for you who have PD.
For those of you who don't have PD, but are still interested, this is a look "inside the Parkinson's Brain" - figuratively speaking, of course.
Up until two days ago, I had mixed feelings about the speech therapy process. In my analytical world, I don't like to be told to do something without knowing WHY I'm doing it. Initially, I was told to say "aaah" as loud and as long as I could in a mid-range tone. They were testing my capacity for breathing with my diaphragm. It also became a benchmark to assess progress or decline over the course of time. There are some other exercises we do, also, but frankly, I tolerated these in hopes that we would go deeper into understanding the problem and maybe finding acceptable solutions.
A light went on when my therapist answered a question I had asked about why I couldn't read aloud a long sentence...one that any 5th grader could tackle with ease. In so many words, she said my problem was physical not necessarily mental. What I am attempting to do (what I used to do without effort) is to synchronize my tongue, jaw, lips and vocal chords with my lungs and diaphragm until my air supply is used up, take another breath and repeat the process. "No problem," you say. Except in the case where none of the above muscles are working properly. I run out of air after four or five syllables. This is where I need to focus my attention and practice. Now I understand WHY I need to practice and WHAT it is I need to practice...synchronizing those muscle groups.
Here's an example: "Terrance cultivated tomatoes and turnips in his terrace gardens." When I try to read that at a volume of about 80 dB (so people can hear me), I quickly run out of breath. I have to break it up into manageable phrases...
Terrance -(breath)- cultivated -(breath)- tomatoes and turnips -(breath)- in his terrace -(breath)- gardens.
Try that for yourself - aloud, breathing in deeply at each break. Now, try it without reading words from a page, but rather think a thought, visualize the words - with breath spaces - then say them. If the person you're addressing, can't hear you, say it again - louder...one sentence at a time.
How did you do? For a guy like me that is used to doing everything at warp speed, it can become very interesting. My perception at this moment in time - is that asking me to try harder, is not unlike asking a person with Cerebral Palsy to try harder to sit up straight.
Hopefully, with time and practice, my talking will improve. Practice, practice, practice. If you are considering speech therapy: Don't discount it early on. Hang in there - find out WHY you need to practice then the WHAT will make sense.
Saturday, September 28, 2013
This week, our Parkinson's Support Group held a potluck.
Our friends, Tom & Jackie graciously picked me up at our house and drove to Bear Creek community - about 15 minutes north of Murrieta. Beckie couldn't attend because of work. Bear Creek is a gated community surrounding a golf course with a very nice community center building. Lorna was hosting the potluck. Jackie's enchiladas were a big hit, as well as my smoked salmon...both of which disappeared quickly.
It worked out that I didn't sit with Tom &J ackie, but sat with two couples who lived there at Bear Creek: Roland & his wife and another couple originally from New York City. Breaking a cardinal rule, I didn't focus enough to remember their names, even though we were all wearing name tags. I will be more diligent next time.
Without Beckie there to carry the conversation, I felt helpless, because as the discourse continued, it inevitably got to the point where I couldn't verbalize my thoughts. And, it was noisy in the room so the louder I tried to speak, the more stressful it became - which in turn caused more anxiety...making it extremely difficult to verbalize my thoughts. It was a vicious cycle and I found myself shutting down once again into a frustrating, unpleasant and depressing silence. AWKWARD!!!
Beckie is such a help to me in those situations when she speaks for both of us. It gives me time and space to slow down, collect my thoughts and relax. I get into trouble when trying to say long sentences as opposed to simple phrases. Mentally multitasking has become a real challenge - they call it Executive Functioning - which I used to be able to do with flying colors. The more things (thoughts) on my plate, the merrier. But now - I'm limited to one thing at a time.
I don't know which is worse, physical incapacity or not being able to express myself in conversation. I think the latter is worse. It becomes a constant battle to not withdraw and to avoid social situations... much to Beckie's chagrin. I think the toughest part is knowing that, before PD, I could carry any conversation, anytime, anywhere - with anyone. And now, half the time, my 5 year old grandson can't even understand me. THAT is hard.
Thursday, July 4, 2013
LOTS HAS HAPPENED SINCE MY LAST POST...mostly positive.
Good news first -
We've made some new friends,
my garden is growing well,
another granddaughter on the way - due in September (Rachel & Trevor),
and, after 3 and 1/2 years - the tremor that plagued my right hand is still gone!
Bad News: walking and balance are becoming an issue, as well as being able to speak.
Good News: I have a programming session scheduled at Stanford on Monday that should resolve those.
Friends: We had a nice lunch with Tom & Jackie from our local Parkinson's Support Group. I really like them. Tom had DBS a few years back, and it's good to be with others to compare notes.
Garden: Everything in pots - no dirt in the back "yard"... but they're growing well, tomatoes, cukes, basil, zucchini, rosemary, kale, brussel sprouts, and other edibles keep me busy.
Granddaughter: Last I heard, her name is Olivia Lynne, aka Vida's little sister. Our Miracle Girl - Rachel didn't think she could have any more kids after her massive cancer treatments, but Ta Dah! We're excited!!!
REALLY GOOD NEWS: I'm heading to Alaska again! Fishing, Family & Friends. Can't beat it - salmon fishing at it's best.
Tuesday, May 21, 2013
Jefferson Jones asked some specific questions about the DBS process and I asked Beckie to respond at length.
Here is Beckie's response:
We try to remind people all the time that NO surgery is without risk. I'm pretty sure that the % of surgical complications in DBS is practically nil - compared to say that of open-heart, etc. Not to say it doesn't happen. I always say that when you can't live with the complications of your disease, then you willingly jump onto the DBS bandwagon!
In retrospect, we now realize that there were questions we didn't even know to ask prior to surgery! And in our experience, you don't always get told all the details .... I think because those in the medical profession are SO familiar with the details, that they accept all that comes with it as normal process - forgetting that all this is NEW to we patients (and family & friends). That said, no question is too simple --- that's their job ... to provide the answers. Your neuro team should be able to tell you what to expect as a normal process of healing. Severe headache, nausea, fever ..... these are NOT good and should you experience these symptoms, contact your DBS hospital/ER/team immediately.
re:wires ---- I guess it stands to reason that relatively fragile wires can only withstand so much stress. Everything we've read and heard has instructed us to avoid obvious activities like sky-diving, chiropractic adjustments to the neck, crazy rides @ Disneyland and your grandkids throwing themselves around your neck ..... just kidding about that last one. But seriously, as Ken mentioned in his previous msg to you, the kids slamming against the IPG can be painful. As far as the wires showing -- Ken is mostly bald and we have YET to have someone notice his DBS bumps & wires unless we point them out. Since you have hair, I doubt even your family will notice once all your hair grows back. (good question for DR --- do they shave your whole head or just partial?)
I love that you are asking questions. It helps Ken & I refresh our memories of our journey and hopefully be a help to others if we use our convos as a basis for future blog posts. Along the way we have had the opportunity to attend several seminars for PD patients and have found them helpful. If you haven't already, check out local & regional PD support groups online to see if they post upcoming events, etc. We also belong to the Yahoo DBS group @ http://health.groups.yahoo.
you can subscribe directly from that page.
This group has a huge database of information -- the only caveat I generally issue is to use the grocery store method when it comes to postings --- take what you need & leave the rest, remembering that there are people posting from all over --- some who've had great experiences -- some not. I would add that for the most part, those who've NOT had good DBS experiences typically had surgery done at a hospital that was convenient to where they lived and advertised that they 'do' DBS, but in reality didn't have the history/experience really necessary. This is SOOOOO important to understand and something I ALWAYS emphasize when encouraging people toward DBS: the DBS surgeon/team experience/ability is as important as the programmer's experience/ability ---- if the surgeon doesn't place the probes exactly, then no matter how great your programmer is, you are most likely not going to have a great DBS experience and conversely, no matter how well the probes are placed, if your programmer doesn't truly understand what they are doing, you're not going to be happy with the outcome. Bottom line: the place you choose for your surgery is VERY important. The Yahoo group has an article in the database of FAQs --- it covers a lot of these types of things.
Phew!!!! that was long-winded!! Hope you don't mind .... but there's nothing more important than getting all the info you can when making life decisions.
Monday, May 20, 2013
Here are 3 good questions sent to me by Jeff Jones
hi ken, question #1: will I be bed ridden after the dbs operations?
question #2: do you kinda forget u have wires and electrodes in your brain eventually?
and question #3: do u always have to be careful of infection?
And my response:
1) my surgeries were on two separate days
a. on a Friday afternoon, thy placed the electrodes.
b. the next Wednesday they placed the Impulse Generator in my right chest and hooked up the wires.
the Friday surgery took about five hours. I stayed overnight and went home at noon the next day. No pain. I slept for almost 3 days, though.
the Wednesday outpatient surgery was uneventful - I woke up starved & convinced my wife to take me out for dinner! From that point on I was back to a normal at-home routine. I did not have any event work scheduled during the 6 weeks surrounding my surgeries, so that really helped a lot. Don't think I could have done 8 hr days. Any surgery seems to take its toll & some find themselves really affected by the process of the body ridding itself of anesthesia.
2) Yes, except when one of my grandkids bump my IPG or the bumps on my head. I have never had the sense of electrodes being in my head ..... occasionally in the winter I'll feel a tightening of the wires that run up my neck to the top of my head under the skin - so I'll wear a hat. But I'm bald - so maybe I'm a bit more exposed.
3) You really only need to be concerned while healing from the surgical incisions -- both on the head & on your chest. Once healed, it doesn't seem to be an issue.... at least that was true in my case.