Keeping Relations Alive

Illness shouldn’t break up a family. It shouldn’t come between  spouses. Friendships shouldn’t  end because one of you is ill. The truth of the matter, sadly, is that illness tests the family, the spouse, and your interaction with friends. Change of any kind mixed with insecurity and doubt about one’s security is frightening for all involved parties.

This is where  communication,  understanding, patience, strength, and compassion must be expressed swiftly and thoroughly. If there was love when you both were healthy, then there ought to be love when either of you are sick. Marriage vows state “in sickness and in health”.  Real love means taking care of those that you care about as best and as long as you can. I will add as a patient and one who is sensitive to, and aware of caregiver burnout– that caregivers  need to be taken care of as desperately as the afflicted, to assure the health of everyone involved. In many ways, the relationships between friends and family can be strengthened if we treat one another with proper awareness, respect,  and appreciation.

Communication:

-Share your fears with each other and don’t hide your feelings. Show your support and love for one another through your personal strength, faith,  support groups, professional counseling, or mentor. You are stronger than you know. You are not the first person to be tested by what you are going through. This is the time to take stock in your life. Maybe, just maybe, doors close but windows open for a reason. Stay on top of your situation and seek help as you need it from family, friends, the local community. Do your research about the services that are available to you locally, statewide, federally, and even internationally.  The world is quickly becoming a smaller place thanks to the internet and the sharing of information.

Understanding:

-Common ground isn’t always easy to find when one party is in discomfort and the other has a clean bill of health. Just the act of trying to imagine another’s challenges can help to put negotiations back on track. Taking the time to listen, observe, and feel another’s pain, can make tremendous change for bonding and healing.

Patience:

Finding that part of you that slows the mind and targets the need for anything other than a focus on improving one another is essential. Patience is a virtue that you can attain with breathe, realization, commitment, and keeping love alive. Understand that all parties must observe patience for this to work efficiently and equally.

Strength

-I will admit that this one may take time, effort, exploration, and even outside assistance. Find what works for you.  Maintaining your wits in a crisis is not easy and takes a unique skill set.  Dealing with the added stress can take a toll and injure anyone around us. Whether you need a massage, to go to the shooting range, breaking  something (a non-dangerous and inexpensive object that provides emotional release), pop bubble wrap (reported to be a great stress reliever), working out, singing, or having  coffee with a friend. Finding what works for you is crucial.

Compassion:

-Loving yourself and someone else is what makes for a complete relationship. It is not egotistical to love oneself.  If one is unable to love oneself, a spouse or friend faces a demanding task. It is of vital importance to maintain our connection with others. There is beauty in the world. There is kindness even in the darkest  corners. The human is a resilient and crafty being.    

Wayne Dyer, prolific author and lecturer, has a great saying, “Don’t die with the music still in you!”  Do your best at doing what you  can and surprise yourself . You might just change and see a change for the better. This is my opinion–what’s yours?

Do you have a credo that you want to share? What do you do to improve your relationships? Does illness cost you relationships?  Do you share a positive attitude with others?

I want to hear from you!

Thanks,

Karl

Support Groups Are What You Make Them

There is no denying that Parkinson’s disease (PD) is an awful and debilitating illness that makes life much more challenging. Sometimes, whether we like to admit it or not, we need help. A support group can be an excellent way of receiving the help that you seek.

As someone who used to shun support groups, I decided that I would develop my own style of group. I wanted a group where patients and care-partners could come and feel empowered and educated. A support group should not leave you feeling helpless, alone, or without hope. Our group shares information about new developments in the world of PD as well as what is working and what isn’t working. Often, group members suggest  something to try or a tweak that maybe those seeking a suggestion hadn’t considered. In my mind, this is the model of the kind of support group that can really benefit both patient and care-partner.

Here are some suggestions to starting a support group that can empower your participants:

• Educating others and giving alternatives provides an opportunity to change one’s situation for the better.
• Maintaining a positive and hopeful spin on your meetings not only keeps the meetings upbeat but can make for a more united and cohesive group.
• Sharing doctor information can be one of the best ways to find the right doctor or neurologist for you.
• Sometimes, just going to a support group reminds you that you have more options than you thought.
• A support group is what the members make it. Like any group, the members  keep the group alive and with care and gentle adjustment from group leaders to keep the meetings on track, a support group meeting can be a very healing and beneficial tool to contribute to your healing.

Denial

When we refuse to face the obvious or place blame where it usually is unfounded, problems germinate.  Our minds and bodies are sponges that soak up thoughts, feelings,  experiences,  visions, and impacts. Both the mind and body retain their own memory. When we fail to acknowledge or accept that we are holding on to unnecessary baggage or even garbage that may be contaminating our system,  problems begin to arise.

For those of us who deny our symptoms, illnesses, or our perspective on own personal health, we fail to realize that there are warning signs being presented.  Avoiding a warning sign, be it a tremor,  balance issues, weakness, or any noticeable change in medical condition should be a wakeup call that there is work to be done and not dismissed.

Don’t deny denial. Once you overcome denial you can address the issue or issues at hand and begin healing.  No doubt, it takes courage, fortitude, awareness, and some trust to admit that you may have an unaddressed physical, mental,  or  emotional issue to deal with.  Much of improving  our lives is discovering those issues and buffing them out–not storing them. It’s called growth.

The first step in breaking denial’s hold is taking a hard look at oneself. Don’t like what you see? Guess what? You can change it!

Accepting that you see a change, either positive or negative, is a good place to begin.  Realizing that there may be work needed, be it physical, psychological, spiritual, or a combination of modalities may be the answer to get you back to the path of health. The sooner that you can make sense of the signals that your body is sending you and not ignoring them, the sooner you can help yourself and heal.

(This is just my opinion–I am not a doctor of any kind. I’m just an English Major.)

Picture Of The Week – Staying Social

There is no question that the challenges that come with having Parkinson’s Disease may weed out friendships, acquaintances, or colleagues. Our truest friends and those who care about us will stand beside us when needed most. Keeping social and maintaining your relationships as best you can will help to keep your network active and provide a foundation for support and assistance.    

Build a network of friends and support!

Celebrate Your Life — You Don’t Have To Celebrate The Parkinson’s Disease

Someone that I respect recently wrote an Op/Ed piece that I felt shined  a more negative light on people who maintain a positive outlook on people dealing with Parkinson’s disease.  My interpretation of the piece inferred  that Michael J. Fox calling himself “lucky” or anyone  who considers  themselves lucky to  have Parkinson’s,  to be a “Pollyanna”.  Pollyanna, (as I have read accounts and in full disclosure not read any of the books) went through extreme suffering but was grateful for what she did have.  I see this trait as nothing but admirable. If seeing  the glass half full as opposed to half empty, empty, or even dirty and cracked is Pollyannaish then paint me as a “Pollyanna”.  Having lived over 25 of my 44 years of life with this challenging illness, I am not naive nor am I uneducated. I am well aware that this illness robs millions of people around the world of their ability to move, to work, or to function as they choose. The mind seems to get a mind all of its own and neither the mind nor the body wants to respond to one another.   

Parkinson’s  symptoms of tremor and rigidity appeared in my life at the early age of 17. I spent over 6 years without a diagnosis, never knowing what I was dealing with or how fast it might progress.  Was I scared? Sure.  Did I feel  sorry for myself? Only, after I got booted out of Outward Bound for being considered a health risk to the rest of the hiking party did I feel a real loss, because of the bonds that I had made and my failure to complete what I had started.  Thankfully though, my dismissal from hiking the rugged mountains of North Carolina led me to my last 3 or 4 doctors who finally diagnosed me with Parkinson’s disease. Not until years later, did I realize that it took my leaving the group to get diagnosed and move on with my life. 

The diagnosis of Parkinson’s disease for most people, can be sheer shock and devastation, or sometimes provide a sense of relief such as, “I had a feeling that it might be Parkinson’s” is heard from someone newly diagnosed who was looking for the culprit behind the symptoms.

 As a support group leader, a frequent speaker,  an active advocate for Parkinson’s disease issues,  and as an attendee at several  conferences a year on issues related to Parkinson’s disease,  I can honestly say that those people dealing with Parkinson’s disease who keep a positive outlook, appear to be doing far better than those who are less positive. Staying positive is a choice.

Once I received a diagnosis, I had an idea of what I was up against. Usually, people with  early or young-onset Parkinson’s disease symptoms progress slower than older patients. The Disease can impair both mind and body, cognitive function, memory, speech, swallowing, balance,  gait, posture,  and numerous other challenges. Parkinson’s can unleash an array of physical and mental  complications and with side-effects from Parkinson’s  medicines almost every patient can have a unique combination of symptoms .  Some people with Parkinson’s  show little to no obvious physical impairments but may suffer strictly from cognitive issues or vice versa.

The really good news is that as bad as this illness is or may seem, there are numerous therapies, medications,  exercises,  doctors, and classes, support groups out there that can make a difference in your life and help you change your life for improvement. While I don’t discuss DBS (Deep Brain Stimulation) surgery, I have seen it help many friends and for some it has not been as positive.

Parkinson’s has taught me to appreciate every day, to appreciate and to truly be grateful  for the good things and the simple pleasures in my life. Whether one has Parkinson’s  disease or is in perfect health, the realization that a positive outlook not  only makes you feel better but makes those around you feel better as well. I didn’t choose to spend the majority of my life with Parkinson’s disease, but I did. Sure, illness throws roadblocks and detours in the path, but that’s where the ability to adapt and creativity come into play.  Any illness can change how you see yourself and may get in the way of your perception of who you really are.  This is an opportunity to take a hard look at your life and observe that maybe a change in lifestyle is in order. Reducing stress and altering your life for the better in diet, exercise,  and complementary therapies on top of neurological care can have a tremendous impact on mood and well-being .

I hope and wish for a cure for all of us. Until the puzzle of Parkinson’s disease is solved, I believe the best course of action is to stay informed, take the best care of your body and mind as you can, take your meds on time, eat low on the food chain, eat organic, and get your rest.

If every day were sunny and warm could you truly appreciate the loveliness without experiencing those cold gray damp days of winter? The balance of life exposes us to pain because without it, there is no knowing pleasure. 

Take stock in the fact that people care about you. Focus on the simple things in your life that you can appreciate, like having a comfortable place to sleep, clean air and water,  the beauty of Nature around,  and so many more details of life.

I would like to know what you think.

Picture of the week – Rainbow

When the clouds part and the sun comes out, there is a rainbow.

As basic and obvious as it sounds, there is no pleasure without knowing pain and you really can’t experience joy without experiencing some suffering.

This discovery came to me on my own but philosophers and most religious scholars made this revelation a long time ago. Maybe, even though I thought I had understood the balance of life. Not until I truly experienced the ups and downs that come with chronic illness could I completely appreciate the joy that comes with each day. There is an exhilaration in just being and savoring each and every day.  The rainbow may not always be obvious but if you look hard enough, I think it shines through the clouds.

The Joy Of Starting A Support Group

Support groups are just a place for people to commiserate and belly ache, or at least that was what I thought they were.  I had attended a group for a year or so, but inconsistently,  for that very reason. I was finding that meeting with the group was having the opposite effect of what I had hoped to achieve. My intention for going to these groups was to learn, to be inspired, and to come away with a better strategy of how I might live my life with Parkinson’s Disease. Rarely, did I get that satisfaction. I don’t blame the leader or the group, the meeting just wasn’t ran that way and the patients in the group weren’t in a place for my type of meeting.

Some support groups are instant successes and others may take delicate pruning. The support group is an ever evolving entity as it rotates new as well as older members. I have seen Parkinson’s  Disease support group members range from the ages of 25 to 75 years of age.  A support group binds everyone in that meeting for  one unified purpose that transcends all cultural or social labels. Rich or poor, famous or not, each of us is there to learn, share, educate, laugh, strategize, congregate, and gain a new perspective.

My vision for a support group came from what I selfishly needed. I wanted to develop a safe and welcoming environment where the group felt comfortable to be at ease enough for 2 hours to be themselves. I saw this support group as an opportunity to develop true meaningful dialogue between patients and even carepartners.  I take great joy and no credit for the amazing transitions that I continuously see in members. Once quiet members who kept to themselves or who had little or nothing to say, now take the initiative to embrace new members in need and are always willing to add thoughtful and meaningful commentary. Watching the group grow and take shape has been a labor of love.

I must admit, I think the group is 8 years old but it could be slightly older. On the evening of our inaugural  meeting, my wife, Angela, and I had no idea how many people to expect. It was a cold damp March night and I was sure no one would come. Much to my amazement, one couple showed up and I am so proud to say that they are our dearest of friends and remain in our support group after all this time.

10 Medical Questions To Ponder – I Think

1. Why isn’t there a National CareGiver’s Appreciation Day?

2. Why isn’t there a day devoted to remembering friends and loved ones who have left us?

3. Why do we (the USA as a culture) shy away from the ill, the frail, and elderly, when they need the assistance the most?

4. Why don’t we educate students in high schools, colleges, or even younger kids with classes on illnesses and illness sensitivity training?

5. Don’t the ill and disabled have even more to teach than the healthy person, because they live with an even greater challenge than those of us living with a fully functional body?

6. Shouldn’t caregivers and carepartners receive a stipend or tax break for all that they do to take care of their loved ones plus keep them out of hospitals and nursing homes?

7. Why can’t we have a more progressive healthcare and insurance system that rewards proper nutrition and self-care with lower doctor bills and reduced insurance rates?

8. When are doctors going to come around and finally embrace complimentary therapies instead of the old cliché response, “Well, you can do it as long it doesn’t do any harm, I suppose.”?

9. Are we ever going to hear a doctor admit that he/she was ever wrong or made a mistake?

10. When is the medical community going to stop treating people with illnesses as someone who is incapable of making choices or knowledge of their own condition? Who is more knowledgeable of  illness, the person living with it on a daily basis, or the doctor trying to treat and maybe even cure it?

I would love to know what you think! Please send your comments and don’t forget to subscribe to get new postings, if you like my blog. I am happy to announce that Twitter account will be active in the next day or so, so please follow me on Twitter very soon!

Thanks for reading!

Banyan Tree Photo

Banyon Tree

The Banyan tree is a majestic and inspiring tree made up of numerous individual offshoots to form a sturdy and healthy trunk. I am in awe of these trees and inspired by their sheer beauty! Enjoy!

My Zelapar Follow Up

To my few but loyal followers, I apologize for the brief hiatus that I have taken in keeping my blog up to date. I am publicly making my declaration that I will try to commit more time to keeping this space current and relatively entertaining. I ask only this, of you the reader, if you think this, my blog, to be of worth, that you pass it on to a friend, a collegue, or even just someone that you feel a need to get back at–well, okay that might be a little cruel and unusual punishment. 

I realize that I never got back to you, my friends, what the final outcome was from my nightmare account with Zelapar, a drug that I only took for 3 days but stayed in my bloodstrem for over 21 days. If you missed my saga with this drug, just check out my earlier postings to learn how this drug dragged me through the proverbial ringer.

At this time, I think that I can honestly conclude that I have no residual side effects or known damage from my stint with Zelapar. Yes, it caused weeks of frustration, weeks of aggravation,  and much more dyskinesia than I am normally accustomed to, but in the end, I came out alright. As best as I can tell, I seem no worse for wear.

I can’t say it enough: Every PD patient is different and every med is going to help, do nothing, or challenge him or her.  If I can offer any advice, from personal experience and not from a medical perspective, the patient can best serve themself if he or she monitors his or her condition closely as to best be aware of any encroaching side effects or changes in condition. What works for some may not work for all–it’s just that simple with this disease–at least from where I sit.

No thanks to the makers of Zelapar or the FDA, both with whom I filed concrns with, only to be lost in the vapor. No follow-up call, email, or contact of any kind. I would think that there would interest by someone in one of these large institutions that actually give a damn–but no! Then today, this piece of news slippped below my radar:

Aug 20 (Reuters) – The U.S. Food and Drug Administration said on Friday it will examine the potential heart risks of Novartis AG’s (NOVN.VX) Parkinson’s drug Stalevo, a combination of two treatments for the debilitating brain disease.

I am not on Stalevo but I have many friends who are taking this drug. I encourage you to keep up with the constant flurry of PD data, breakthroughs,and warnings through the power of Google and the web, whether you are on Stalevo or not. If you are on Stalevo, I would suggest that you closely monitor the outcome and keep in touch with your Neurologist about where this goes.  Remember, that’s just my humble opinion and not medical advice.

Let me know what you think and please subscribe to my blog. Thanks!