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AsoftVoice.com Recognized as one of the Best Blogs on Parkinson’s Disease for the 4th Year in a Row!

Healthline 2018 Best Blogs Parkinson's Disease

Healthline 2018 Best Blogs Parkinson’s Disease

I am so grateful and honored to announce that for the fourth year in a row Asoftvoice.com has been chosen by Healthline.com as one of the best blogs on Parkinson’s! I am elated to be picked with so many outstanding bloggers and such exceptional websites that I respect so highly! I congratulate all of my friends and fellow bloggers who also received this award!

Thanks to Healthline.com for including AsoftVoice.com as one of their 2018 Best Blogs Parkinson’s Disease and everyone who reads this blog! I hope that I can provide content that you will find to be interesting, educational, and helpful! Thank You!

 

April Is Parkinson’s Disease Awareness Month!

AsoftVoice.com celebrates a decade of blogging on Parkinson’s disease!

It is official—this blog, www.Asoftvoice.com, is 10 years old!

With over 300 archived posts pertaining to Parkinson’s disease and living well, it has been a labor of love! Here is to the next 10 years and with luck, a continuation. I hope to hear from more of you, so that I might address topics of interest.

I am happy to report that I don’t have a problem with procrastination—in fact, I’m good at it! Call it a talent, call it a mastery, and to think that I have no training! I am a Master Procrastinator! I admit it—I procrastinate more these days, to stay creative and fluid. I like to work odd hours, sometimes. I write when inspiration calls. So, here are some thoughts to share with you that I hope you can use:

  1. Parkinson’s disease is a strange and quirky illness with a host of awkward and annoying symptoms. I don’t make light of the seriousness of this illness, but if you keep too rigid, you will surely snap. As hard as it may be, hold on to smiling and laughing–as best as you can– it is so important to monitor and maintain a sense of humor. Humor and a positive attitude can go a long way, with any illness! Laughter really is a great medicine!

  2. Parkinson’s disease is a wonderful excuse to break convention— you may find that you enjoy living outside the regular everyday box. It may take time. I’ve had over 30 years to adjust, so forgive me if I make it sound easy. Living with Parkinson’s is anything, but easy.

  3. The fact is that structuring your day and schedule to accommodate your on-times as well as your off-times can make your days far less stress-filled and less dramatic.

  4. The label of Parkinson’s disease covers a broad range of symptoms, some apparent and some unseen by public eyes. No two of us is exactly alike and therefore, our symptoms, medications, progression, and helpful therapies may differ.

  5. If Parkinson’s teaches us anything, it is to slow down the rapid pace of life, look around and enjoy it, to eat slower and savor what we are eating. Parkinson’s is an unusual teacher that forces us to slow down whether we choose to or not. See this new pace as an opportunity.

I don’t know what the next 10 years will bring, but I plan to continue to share and expand my voice through this site, maybe a 3rd or 4th book, and maybe a few surprises (good ones) along the way. I hope that you’ll join me for the ride!

Building a Plan for Your Parkinson’s Disease and Your Health

Without some sort of plan or framework, it is very easy to get lost along the way. Whether you have Parkinson’s disease or not, just having goals may not be enough, as unexpected obstacles can arise at the most inconvenient of times. There is so much in our lives that we can’t expect, but must just accept and move on, as best we can.  Our perspective and flexibility can impact how we deal with adversity.

The following few tips are some thoughts and suggestions that you may want to consider. I hope that these tips might trigger some revelations for you.

  1. Consider building a series of plans from your personal medical team, your support network, your health team (trainer, physical therapist, massage therapist, speech pathologist, etc.). Some of these networks may overlap and vary as your providers may change over time.

  2. Keeping current on developments and timely releases about your illness is not only empowering but beneficial to both you and those who you choose to enlighten.

  3. If you have early onset Parkinson’s disease, I strongly suggest for you to consider finding a Neurologist who is a Movement Disorder Specialist, as they have special training dedicated to this illness.

  4. Don’t compare or contrast your Parkinson’s to anyone else’s. We each have our own flavor of Parkinson’s and we each have our own unique journey.

  5. Timing our medications is a crucial component to making the most of our day. Maintaining and strictly adhering to a timely regimen where your medications can work at their best, takes experimentation and some trial and error.

  6. Try not thinking of illness of any kind as a war, a battle, or a win or loss. Consider illness as an obstacle or an obstruction that must be worked around. No one wins a war. War is dark and violent. Maybe, a new perspective towards illness can take some of the anxiety out of it.

  7. Explore the numerous therapies outside of western medicine to see if you can find one that offers benefit or relief. Get good referrals from friends and family.

  8. Keep an open mind to relinquishing some of the responsibility for the good of lowering your stress level and improving your mental health.

  9. Do what you can, while you can! Whether you are healthy or have illness in your life, consider that our control is limited.

  10. While there is definitive change in our lives and the options may vary or seem more limited, we must recognize that we have more strength and control than we realize.

Healthline Selects ASoftVoice.com Three Years in a Row as a Top Blog for Parkinson’s Disease!

Healthline Best Blogs Parkinson's Disease 2017I am so honored, humbled, and proud to announce that for the 3rd year in a row, Healthline has recognized my blog, http://www.Asoftvoice.com, as one of the best Parkinson’s disease blogs!  I enjoy blogging and sharing my experiences and thoughts with my readers. It means a  great deal to me to know that my site may help in some small way! Thank you for reading my posts and coming to my site! I hope that I can continue to offer the content that you enjoy and find to be of assistance.

ASoftVoice.com Recognized as One of the Best Parkinson’s Disease Blogs.

Healthline.com- Best 15 Parkinson's Disease Blogs of 2016

Healthline.com- Best 15 Parkinson’s Disease Blogs of 2016

I am so grateful to all my readers, followers, subscribers, fellow bloggers, and the editors at Healthline.com who selected this blog, once again, as one of the top 15 Parkinson’s disease related blogs for 2016. I am so honored and humbled to be listed with such a talented collection of bloggers and writers. I congratulate you all on your work being recognized and appreciated by Healthline.com.

Thank you for this honor! I greatly appreciate this accolade and I look forward to attempting new ways to entertain, inspire, and inform you.

Be Well!

Karl

April is Parkinson’s Disease Awareness Month!

Spread the word!

Spread the word!

If you didn’t know, April is Parkinson’s Disease Awareness Month!

Also, if you didn’t know, in September, the World Parkinson Congress 2016 (WPC) meets in Portland, Oregon where thousands of people with the illness, doctors, researchers, authors, and other experts in their fields will convene to meet and discuss what is new in the fight against Parkinson’s disease. If you haven’t looked into going, I would highly recommend that you do. This will be my third WPC event. For more information on the event, visit WPC2016.org

10 Holiday Suggestions For Those Dealing With Parkinson’s Disease

Christmas Lights

Christmas Lights

The Holiday Season means parties, presents, parents, and packing on pounds. It is a special time when family comes together to share the joy and celebration. This time of year can also be difficult and trying for many people due to finances, loss of family members, or just trying to coordinate the added responsibility that comes with this time of year.

The added pressure of trying to produce “the right gift” and to cook “the right meal” on top of dealing with your Parkinson’s disease probably isn’t of benefit to your condition. I know from experience, that when I am overloaded with a laundry list of to-do items and I am facing deadlines, stress and tension builds higher and higher – only to make my PD worsen.

Here are a few suggestions to remind you how to maintain your meds, your mind, and your overall well-being over the holidays:

  1. Travel can interject a scramble in timing your medications on an irregular schedule and for people with Parkinson’s, timing can be everything. Do your best to sustain as close to your usual schedule as you can to maintain an even stream of your medications. If you need a reminder, use your cell phone or your spouse’s phone to make sure that you don’t miss a dose.
  2. The Holidays bring on huge changes in our eating habits as we eat and drink more, often of foods that we may not eat at other times of the year. Sweets, pastries, and other rich foods can play a part in reducing your maximum absorption of your medications, so pay attention to what you are eating and how much of it you intake. I find alcohol fiddles with my pills, so I try to not drink at all, but if you do, just pay attention to the impact it may have on what you are taking.
  3. It can become overwhelming when we have multiple family members from multiple families, kids, animals, music, technology, and food and drink, and loud conversation, all in one room. The energy and space can become overwhelming and feel a little enclosing. We all have different stress triggers that evoke our symptoms to come out more. Be aware what induces certain thoughts and feelings, before the trigger takes hold, if you can. The key is being aware of the situation that you are in at the time.
  4. Be sure and take time for yourself, when you need it! Everyone at the party and celebration wants you to be at your best and if it means you need to take a little extra time to get ready, ask for a change in food or drink, take a rest, or need to lower the music to be heard better in conversation, I would think that those slight concessions would gladly be made for you.
  5. Remember to breathe, breathe, breathe! Deep breathing is something very few of us do enough. It feels so good to breath deeply.
  6. Go into each event expecting to have a good time and to really enjoy yourself. Keep your expectations in check and just be present.
  7. Stay as active as you normally would on any other day. Keep on your normal health regimen of exercise, sleep, and diet (as best you can) to keep up daily maintenance.
  8. Address your needs to speak of those you have lost or miss if you can, without interfering with those who may not want to deal with past issues. I like to just light a candle in remembrance of those who are unable t be with us, as this is a way of honoring their memory.
  9. If stress creeps in and you need something, check out my last blog post on the program, HeadSpace and see if this App does’t help clear some tension and anxiety.
  10. Lastly, this time of year should be about whatever you want it to be. Placing expectations and conditions on what you hope or think it should be, only weighs you down. If you build up expectations, it can lead to less successful outcomes. Just being as good as you can be at the time of the event, and being yourself, without expectation, may just allow you to find that you enjoy all your events, even more!

Merry Christmas and Happy New Year!

A Look At Young Onset Parkinson’s Disease

If your first experience with Parkinson’s disease (PD) was anything like mine, I went into a state of shock, disbelief, and a spiral of “what do I do now” syndrome. That was a long, long time ago, here in this galaxy, not so far away.

Since then, I have had almost 28 years to digest and understand (or at least try to) what it means to face the diagnosis of Parkinson’s disease. While in my very first neurological waiting room I found myself, a 23 year old, surrounded by much older patients in wheelchairs with various conditions. At the time, I, like most of the public was positive from all that I knew that only the elderly get Parkinson’s disease. A few years after my diagnosis, it was bittersweet reinforcement from Michael J. Fox’s release of diagnosis that Parkinson’s was not exclusive to those over the age of 60. I would like to think the world outside of the Parkinson’s community has a grasp on the nuances of our Illness, but I think I would be wrong.

Many are surprised that I was diagnosed so young despite that the face of Fox has largely become synonymous with this Illness. Both,

Fighting for right(and candy) at a young age!

Fighting for right(and candy) at a young age!

he and I and many others that I know are not anomalies. We are young and we are a growing segment of the population with Young Onset Parkinson’s disease.

At the time of my diagnosis, I was said to be in the rare two percentile of patients. Now, according to the Parkinson’s Disease Foundation (PDF) it is estimated four percent of people with PD are diagnosed before the age of 50. It is estimated that 60,000 new cases are diagnosed a year and somewhere between 1 million to 1.5 million people in the United States are living with it. The truth is, until data collection is put in place, all these numbers are sheer speculation. To learn more about data collection for Parkinson’s disease and what you can do go to http://parkinsonsaction.org/our-work/data-collection/.

Neurological disorders largely remain a mystery mainly due to the sheer complexities of the human brain. Better government funding, a drive for expediency, better institutional sharing and cooperation about data, and a public outcry that urgency is required right now must be reiterated over and over.

FDA Reaches Out To Learn More On Those With Parkinson’s Disease

Yesterday, I had the honor and privilege of testifying in front of the United States Food and Drug Administration (FDA), about symptoms of Parkinson’s and how they impact daily living. The event brought out at least 20 or more of the FDA’s neurological specialists and decision makers. I watched as they listened to my fellow panelists testify about their struggles with Parkinson’s disease and many took copious notes about what was said.

A good day at the FDA!

A good day at the FDA!

I am confident that they were listening to the plights of those of us facing a variety of issues related to our illness. It is my sincere hope and plea that something positive, like an ongoing dialogue between FDA and patient, or even a rapid push for speedier development of therapies is implemented. It is encouraging and wonderful to see interest from the FDA and the Parkinson’s community. This can be nothing but positive and hopeful!

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