Parkinson’s disease and Snow

Does snow affect people with Parkinson’s disease?  Not actually the disease itself, however, it could possibly affect your mood, which in turn affects your Parkinson’s disease.

Mood disorders such as anxiety and depression are real clinical symptoms of Parkinson’s.  At least half of all Parkinson’s patients may suffer from clinical depression at some point during the course of their disease.  Snow could cause anxiety while watching the snow forecast and even worse when it is coming down.  What if you were driving in the snow and your anxiety increased due to the snow?  It is best to get your caregiver to drive in the snow for you.  Some people get depressed because of snow, especially when it dumps several inches and it is days before you can get out.  Make sure you mention any of these problems with your doctor.

Snow can make others feel warm inside.  Maybe this person loves to snowmobile, sled, ski, snowboard, just to name a few.  I know some Parkinson’s patients that go skiing all the time.  I guess they don’t have problems with Bradykinesia which refers to slowness of movement. Bradykinesia is most apparent when people with PD start to walk or begin to make other conscious body movements such as reaching or turning. Their movement takes extra effort and appears slow and hesitant – many appear to shuffle their feet when they walk. Parkinson’s patients can become clumsier. Make sure you ask your doctor before you hit the slopes or even go out to play in the snow.  Be very cautious since falls are prevalent in PD patients.

 

World Parkinson’s Congress 2016

I am proud, excited, thankful, and a little nervous to able to attend the 4th World Parkinson’s Congress and in less than 4 hours, I will be flying out to Portland, Oregon.
The mission of Congress is to provide an international forum to learn about the latest scientific discoveries, medical practices, caregiver initiatives and advocacy work related to Parkinson’s disease. By bringing physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson’s disease together, each Congress allows for a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for this devastating disease.
First of all, I am proud that my abstract was accepted and I get to display my poster board and speak with attendees about “Positive Attitude and the PWP Patient”. It has been a long time since I have completed anything of its nature. The project was anything, but easy. It tried my knowledge of program and computer skills. I felt like I was on the edge of a heart attack or nervous breakdown, but definitely it put me on the edge of my seat. I had to find a lot of patience within myself. I heard alot of “you can do it, not only from my spouse and kids, but myself too. I had to find a lot of patience within myself to finalize the poster.  I am thankful for my friends, Rick Smith, Jr. and Neil Jeffries, for their computer program knowledge,  for Tammy Smith for tracking them down, and for Dale Mulhall of Amazing Signs and Banners for the beautiful printing of the poster.  Thanks guys, I could have not completed without you.
I am excited to be able to attend a World congress such as this with over 40oo participants. I have never been to Portland, Oregon, and see its beauty.  Excitement is in the air.
I am thankful for the travel grant; that so many of us need due to the fact our incomes have drastically been reduced and medical bills skyrocketed from this chronic progressive disease. I am thankful for the many others who attend our fundraisers to help with the many expenses that come along with the travel. I couldn’t do it without you guys.
I have to say I am a little nervous, not about flying or attending, but about illness. I am usually in the confines of my own home. I am not usually out in public, therefore not exposed to many illnesses. I am lucky to stay pretty healthy with this disease.
To learn more about this congress go to http://www.wpc2016.org or follow along with my posts throughout the week. I will be posting about the many workshops, sessions, and talks I will be attending.

Until I blog again, so long!

Mary, the pd gal

 

Turtle Shell & Faith

Mary Killian

A prayer and a warm cup of tea is a great way to start off your morning after an enjoyable and fun weekend.  I’m feeling more relaxed this morning than I have in a long time and it’s not from the delicious cup of warm tea. It’s actually from the cups of faith and friendship that I received Saturday night. I went into a party feeling vulnerable and out of place.

My world usually consists of limited family, persoKTno5kkjcns with Parkinson’s disease and their caregivers. They are my strength and my crutch. When I go out, I normally crawl up in my hard shell like a turtle and don’t let anyone see who I have become. Over the past 12 years I have been ill and have built a home in this nice secure shell, closing out family, friends and my faith.

For some reason this Saturday I felt different.  I walked into the party with a smile on my face and if you know Parkinson’s you know facial expressions slowly come to an end.  I slowly stuck out my head a few times to make sure everything was safe. When I saw an old familiar face I slowly walked over and was greeted with a warm smile.  I then knew I was safe and it was time to come out of the comfort of my shell. Little did I know I was about to pour out  my heart and soul. However I still needed my husband to come around, just for only a second or so to feel comforted and know I would be okay.

My friend listened to me intently as I poured it all out about living with Parkinson’s and the trials and tribulations of life. I was proud that I didn’t portray  “ poor, poor, pitiful me” attitude since that is really not me.  She sat there not judging, not pushing faith or God, not making me feel less, but listening to every word, encouraging me and showing her kindness and compassion.

The St. Michael Community saw me not only more vulnerable but also after using up all my “spoons” (that’s another blog) and lack of medication, a feeling that my knees were going to drop me to the ground and needing assistance to walk out to the car where my wonderful son Brandon was waiting to drive us home.  Surprisingly I didn’t feel embarrassed because that is just Parkinson’s and I do the best to get around with this incurable disease.

I want to thank those that reached out with a helping hand, the ones with a touch of your caring heart and lots of 8kind words.  You all helped me feel at ease.  I want to thank Tom Ruggiero for his hospitality, Bill Downey for his delicious cooking and others that brought some delicious appetizers and cookies.   Dan Ryan for calling me out and laughing with me and not at me.

Pat Mangeot for the compliments on my postings on Facebook, my husband Tony for his caring and patient heart and for pushing me to stick with the St. Michael community, Kirk Senn for speaking with me and letting his wife sit with me and last, but definitely not least, Pam Senn for letting me vent, listening to me and staying by my side.  Your friendship and thoughtfulness is  greatly appreciated.

I am excited to say “I walked out of there feeling stronger than I have in a long time.” That feeling made my blood flow through my veins and that was invigorating.

Thanks, St.  Michael Catholic Church football coaches, Athletic Board, their families, and community for helping me feel at ease and accepted.  Hopefully because of this kindness and renewed faith I can find a way to make it back to mass.

I’ve been praying for strength, friendship and faith and I believe my prayers are being answered.

Time to log off to create more “”spoons” to make it through this day.

I hope everyone has a blessed week

  • Mary Killian

 

President Obama Letter

It is estimated that over 500,000 Americans live with Parkinson’s disease, including me, Mary, living right here in Louisville

While being in Washington D.C. last week with over 250 participates, including me and my daughter, advocating for better policies, treatments, and a cure for Parkinson’s disease, I received a copy of the attached letter from President Obama.

It is touching to know that the President of the United States and his staff have taken the time out to acknowledge that April is Parkinson’s Awareness Month and to ask for the support of our community.  I plan to send President Obama a personal note of thanks for his support and recognition of this chronic progressive disease that has not only affected me, but also the lives of my sister and grandmother.

There is really no known exact figure of how many American’s have this diseases.  While in D.C., the Advancing Research for Neurological Disease Act H.R. 292 was passed to the Senate 849.    This critical legislation will create a national data collection system at the Centers for Disease Control and Prevention (CDC) focused on neurological diseases, including Parkinson’s disease. It is estimated that between 500,000 to 1.5 million Americans are living with Parkinson’s, but the truth is we do not have accurate information on how many people are living with the disease and what causes it. This lack of core knowledge inhibits Parkinson’s research, programs, and services.

I am permanently disabled due to this disease and am in hopes to receive your support in getting this legislation passed as soon as possible.  Please contact your Senator and let him know that you are in support of Senate 849.  Your support will be greatly appreciated in the Parkinson’s community.

For more information, please comment.

I am all over the World with Parkinson’s disease

Keep in mind, I am not a doctor of any kind.  I am a person with experience living with PD.

I am sending out Parkinson’s disease information all over the world.  Exposing information that doctors do not have time give to patients living with PD, their caregivers, and the general public about this chronic progressive disease.  I enjoy educating about the symptoms of PD, about medications, and side effects of the medications.  I share information in regards to resources for PD patients and their caregivers.

My blog is being read, not only by United States, but also United Kingdom, Canada, Australia, South Africa, Netherlands, New Zealand, Spain, India, Belgium, Ireland, Sweden, Germany, Norway, France, Trinidad,  Tobago, Poland, Denmark, Pakistan, Saudi Arabia, Philippines, Coasta Rica, Finland, Malyaisa, Portugal,  Turkey, Singapore, New Mexico, Argentina, Venezuela, and more.

If you want to know more, feel free to follow my blog.

#PanForum15  #parkinsonsdisease  #parkinsons

Exercise Alternatives

Exercise; have you heard this word recently?  I know I have heard it over a dozen times this year.  I’m beginning to think exercise helps you with everything.  I’ve tried it several times and have failed several times.  I’m not making the grade to pass.  Thank goodness I didn’t do that in math and English.

I realize I have to do it.  It would make me feel so much better, but I don’t know where to start.  I usually try something and it lasts about 2-4 weeks then I stop.  I’ve tried it at home and the gym.  Oh, yes; I’ve paid a membership that didn’t last.

I’ve tried walking.  Indoors, outdoors and even on a treadmill; and I can say I just really don’t care too much for it.

Yoga is too slow and quite for me.

Jazzercise is just too darn fast that I can’t keep up.

Water exercise; well let’s just say that isn’t for me either.

I think I will Google the words  ”Exercise Alternatives”.  Maybe there is some alternative to exercising.

Wow!  I’m not the only one that has this problem.  There are all kinds of suggestions.  100 fun exercises to add to your gym membership….Dance…tried it!

Don’t forget those old exercise video’s that are collecting dust.  Now you can get them on-line and down load to your iPod.  You’re kidding me?

Kettle bells, medicine balls and even sand bags; I think I need to go back to school to learn all this.  Not!  That would be too much brain exercise.

There are some alternatives to exercise that make me think.  You can count house cleaning as exercise.   Not me; hate it!

Coaching is considered exercise.  I think that is because it gets your heart rate going.  I did that for over 15 years; burn out!  Move on; what else.

Here are some good ones:

Home gym. Keep a set of dumbbells in a kitchen cabinet or food pantry, and do a few bicep curls and shoulder presses while dinner is cooking. Use a stability ball as a desk chair to work your abs while you’re paying bills. Keep a yoga mat under your bed, and pull it out for some downward dog in the morning or before going to bed at night.  I’d probably cook the dumbbells; I’d forget to pay the bills and I have been doing the downward dog every day.  It helps me move in the morning.  Wow!  Score one for me.

Date nights in sneakers. If your date nights typically involve a dinner and a movie, ask your partner to join you on a long walk, bowling or dancing.  I can see me asking Tony to go walking, etc.

Get a dog. A Canadian study showed that dog owners spend about 300 minutes or five hours a week doing Fido-related physical activities. By taking pooch out to do his business, playing tug of war, and going to the dog park, you will burn lots of calories.  I have four dogs and they like to lay around all day under my feet.  Plus, I live in the country and just let them out the door.

There are a few more listed, but my fingers are getting tired from all this typing.   Finger Exercise!  Score!

I have gotten a lot of exercise writing this blog.  I’ve seen the word “exercise” over 100 times; I’ve gotten out of my seat at least 5 times to stretch and, my brain is tired from all this writing.

Wow!  I did about 45 minutes of exercise.  I’m tired and need to go rest.

© Written by Mary Killian

I Want My Life Back!

I want my life back without illness, fear, and pain.

I want to be able to walk fast, skip, and run.  To be able to walk up the stairs without failing would be grand.  No more bruises, scraped knees or hurt ankles would make me smile again.

Multi-tasking has left my life.  Now I understand that saying “can’t chew gum or walk at the same time”.

Where have my brain cells gone?  They’re sure not up there anymore.   To be able to say words when I’m talking and say them correctly without a slur.

I want my life back to be able to drive and go to places to see the world. Becoming a homebody more and more every day is making me feel like I’m closing out the ones so dear to me.

Cooking used to be so enjoyable now it’s a disaster in reality.  No more 3 course meals for you; only mac and cheese will do.

I love to write, but these fingers now just don’t want to type.  Oh, what to do?  Just take it slow.  You’ll get those words on paper.  It just might take a day or two.

 

© Written by Mary Killian

Mind, Mood, & Memory

I am of 50% of the PD patients that experience this mood disturbance. Mood disturbances in PD lead to worsening of function and quality of life. Despite their high occurrence and negative effect, mood changes in PD are less well-studied and understood than motor symptoms.

Studies show that 1 out of every 2 patients experience depression and/or anxiety some time during their illness. I do experience depression and/or anxiety at different times. I feel that I have isolated myself from society. I don’t go out much because I don’t want people to see me the way I am now.

I occasionally have psychotic symptoms which include visual hallucinations and sometimes suspicion thinking. This part is crazy and yes, I have had these happen to me. The first time I had a visual was about 1 year ago. I could see standing in my doorway a midget. It was so real. Plus, I have been out in my yard, by myself, and started thinking that there were people in the woods staring at me. I had to go back into the house. It was so freaky. A couple of months ago, I visualized, in the middle of the night, that there were helicopters outside my window. I could see the headlights, hear the helicopters and see the light beams from the guns they had on me. It was very real. I woke Tony up and was crying and holding on to him very tight. I was happy he had patience with me through that night.

There are times when I wake up and cannot remember my dreams.  However, Tony sure does.

At times, we can look back and laugh.

© Written by Mary Killian

Influence Congress!

Join hundreds of Parkinson’s advocates on Wednesday, March 25 for the Parkinson’s Day of Action!

You don’t have to be in Washington, DC to influence Congress and the decisions they make. On Wednesday, March 25, more than 200 advocates from across the country will be on Capitol Hill meeting with their Members of Congress to talk about Parkinson’s disease and several key policy priorities. You can strengthen our unified voice for the Parkinson’s community by calling your Members of Congress on March 25 between 9 AM and 5 PM ET.

Mark your calendar and on March 25 head to Act4PD.org to contact your Members of Congress. We have talking points and phone numbers ready to make your phone calls easy!