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It seems someone is always trying to sell you something online and the Big Brother of the Internet has your demographics down to a science. I am one of those people who never gives truthful personal information online in an effort to not let Big Brother know me too well.  I told Facebook that I am a 114 year old man and yet, I get bombarded with ads for hot flash treatments and hormone supplements. How do THEY know? You only need to put one word in a google search and you will get ads for days and days related to that one topic.   These days, numerous ads for products, supplements, treatments and devices related to Parkinson's shower my social media. I know this is because of my daily searches for something, anything, new that might help me and others with Parkinson's.  As much as I try not to pay attention to these ads,  I'm as human and as desperate as the next person and it is hard not to hope something will work.   Once in a while, I will try out something if it is recommended by someone I know or I see that multiple people have recommended it.  I do this with a healthy dose of skepticism and an awareness of the company's return policy.

The first thing I bought online after reading a review from a fellow Parkinson's blogger was a weighted blanket. (Big shout out to buy lasix 40 mg for the recommendation).  I have personal experience seeing the benefit of these with Autistic children.  I LOVE my weighted blanket. I don't claim to know why it works, whether it just be the added physical weight on me or if that sensation actually does something to the nervous system but I know I feel better when I use it and my tremors are reduced.  On the downside, it is heavy.  If you have trouble turning in bed or getting out of bed, it might not be the thing for you.  It is also hot.  I have tucked it away for the summer and I miss it but the heat is just too much for me. I have actually considered using the blanket  on the side of my body affected by PD and hanging the other half out from under the covers, balancing out the hot and cold, but the gymnastics involved in keeping this balance and wanting to roll over in bed at 3 a.m. made me rethink this.
I heard there is a "cooling" weighted blanket but am waiting for  more information before I jump on that one.  It doesn't seem possible that something so heavy could be cooling but I have been wrong before.

More recently, I tried a vibrating metronome worn on the wrist called the buy lasix 40 mg online that I saw some Rock Steady coaches discussing.  The device was designed for musicians, not people with neurological issues. This one peaked my interest because I have seen people move better when they have a rhythm to move to.  I often play music with a good beat when I need to cook dinner.  Having a rhythm makes my movements smoother.  My hope was that the vibrations would lessen my tremor.  Although it seemed like my tremor was less sometimes when using it, it didn't help at other times.  After many trials, my results were inconsistent.
 I did like wearing it when out for a walk but as of right now, I don't really need it for walking so I returned it.  I think there is a definite potential with this to help someone with gait issues and I know of a music therapist that uses vibrating metronomes for gait training, speech and singing. If you try this,  I highly recommend training with a music therapist or physical therapist to figure out how this might help you.

My latest purchase was buy lasix furosemide which are vibrating devices that are supposed to stimulate the Vagus nerve and calm the nervous system. You can wear them on the wrists or other places on the body. Unlike the Soundbrenner Pulse, you have to wear two of them.  I was more than a bit skeptical but the company offers a thirty day return policy so I figured why not?  My first few times trying them were disappointing.  I really thought I would be returning them.  Not wanting to give up on them too soon, I kept using them everyday for about 20 minutes at a time.  I used them later in the afternoon when my meds don't work as well and my anxiety peaks.  After a while, I forgot I had them on and would realize later that my anxiety was less and my tremors were reduced. I haven't worn them in public yet and even at home, my husband sometimes thinks my phone is buzzing when it is my Touch Points.  The scientist in me can't dismiss the fact that there may be some placebo effect in there but even if there is, they make me feel better and  help me until my next dose of meds kick in.  I'm not at the thirty day mark yet but am likely to keep these.

I am not a doctor, just a person living with Parkinson's,  that disease of the incredibly complex and sometimes completely mysterious brain.  I believe there is knowledge to be gained in exploring alternative options and I think that we should share that knowledge.  I am not recommending trying things with the potential to harm you or trying things that you can't return if they don't work for you.  I am recommending that if you try something, share the info on how it works with others.  We are all in this together and we are better when we fight together.

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Although I never wanted Parkinson's, I am thankful for some of the things it has taught me.

I have learned to enjoy everyday, mundane activities.  Those things in everyone's day that they don't think about, often stand out to me.    I am able to rise easily  from a chair,  do laundry and cook dinner.  I can drive to the grocery store when needed.  Although household chores are not fun, I find joy in the fact that I can do them.  I know all too well now that not everyone can do these things.

I have learned to take advantage of the times when I feel my best.  Parkinson's can be so unpredictable throughout the day that there are times when simple tasks become hard.  You might find me chopping vegetables for dinner in the middle of the morning because I am feeling good in the morning and never know what the afternoon will bring.  (It often brings tremors and fatigue).  If it ends up being a good afternoon, then dinner is already prepped and  I have extra time to enjoy something else.

I am learning to be a planner. I  set early deadlines for myself.  This can be puzzling to others..."why are you working on that now?  You've got three weeks to get it done."  I don't know how I am going to feel in three weeks, or even one week or even in one hour so if I can, I seize the moment and try to squeeze in as much as I can while the going is good.

I have learned to be more patient with myself.  When the off times hit and I can't type as fast as I want or get up the energy to clean the house, I allow myself the time to rest (something I have never been good at). I try not to feel guilty when someone else picks up the slack (usually this falls to my wonderful hubby).  I try to wait patiently for my meds to kick in and for some sense of normalcy to return so that I can get back to life.

I have learned that I am strong. Adversity can knock you down and it can make you stronger.  PD is a big adversity.  It does knock me down sometimes but I get back up.  Although I know that my future is likely full of knock downs, I pray that it is also full of getting back up.

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Currently, approximately 6 million people are living with Parkinson's disease (PD).  This is up from 2.5 million in 1990.  Scientists think that this number will increase to 12 million in the coming generation.  Although, treatments and medications are getting better, it looks like we are still quite a ways away from a cure.  So what can you do about it? It is a giant problem.  Is there some way you can help?  Whether you have PD or not, there are things you can do to improve the lives of those living now with PD.

If you are living with Parkinson's:

Fight back.  When that magic treatment or cure does come along, you need to be as healthy as possible so do what you need to do to fight your PD.  Exercise, take your meds if needed, eat right, stay educated and involved.

Volunteer for clinical trials.  Clinical trials vary. Some require  a lot of effort.   Some don't take much effort at all and can be fun and educational. Some can be interviews on the phone or online.  Many require you to visit a local medical center.  Some even pay you for your time. Someday, someone will be part of the trial that results in a cure. Will it be you?  Unfortunately, without volunteers, not much will get done.  You can look for trials on the buy lasix online canada or at where can i buy lasix online.  Check with your neurologist also.  They often know about the local clinical trials and can advise you whether you might be an appropriate candidate or not.

Educate others.  I don't know about you but when I tell people that I have PD, I want understanding, not pity.  To gain understanding, people need to learn about it.   I was surprised to find out  that many, maybe even most, people don't know much about Parkinson's or they are mistaken in what they think it is.  Encourage others to ask questions and take the time to answer them.  I often hear people say they have a relative with PD but knew nothing about it.  You may be the pebble in the pond that causes ripples far and wide.

If you do not have Parkinson's:

Educate yourself.  As stated above, people with PD want, and should receive, understanding, not pity.  There are plenty of good websites out there to help answer your questions.  Try the buy lasix online with mastercard, buy lasix online uk, or the buy lasix online usa.  I have found all these organizations to be accurate in their reporting and proactive in their efforts to defeat PD and help those living with PD.

Volunteer.  Volunteering is good for the soul...and much more.  When I take the time to help others, it helps me.  I get all warm and fuzzy inside (ok, maybe that's tremors sometimes but you get the picture).  Do you enjoy exercise? Volunteer at a local buy lasix online australia or other fitness program for PD.  You don't have to make a huge time commitment. Do what you can.  Are you able to drive and have a little bit of time?  Many people with Parkinson's have given up driving and are stuck at home.  You could drive them to a support group once a month, help them grocery shop or just go out for coffee.  Loneliness is a key factor in determining the progress of Parkinson's.  By spending a little time with someone, you could actually help them feel better and cope better. Caregivers can also use a break so maybe you could fill in so they can have a few hours to themselves.  Have only a few hours a year?  Volunteer at one of the PD events in your area such as a walk or other fundraiser.  They are always thankful for help. Have some professional or personal experience with PD?   So many organizations need your help.  Consider serving on a board or maybe even organizing or running a group.

Donate.  Unfortunately, it is a reality of life that not much in the research world gets done without money.  PD is also an expensive disease to have.  People often go without much needed therapies and treatments because they can't afford them.  One of my favorite organizations is the where can i buy lasix water pills online which helps people with Parkinson's afford out of pocket expenses related to their PD.  There are many other organizations also.  Don't forget to do your homework and check out any charity before donating.  You can check out many of them at can you buy lasix over the counter.

Stay healthy.  The statistics are bleak for the prevalence of PD in the future.  You never know when or who it will strike.  I never expected it to hit me.  Thankfully, so far, I am in good enough health to hit back. You can better your odds of staying healthy by protecting your brain from the inside and out.  Get your exercise, eat a healthy diet, avoid pesticide and other toxin exposure and take precautions to avoid head injury.  If that means wearing a less than stylish bike helmet next time you go for a ride, so be it.

I pray that this is the last Parkinson's Awareness Month we ever need to have.  I pray every day that the cure is right around the corner and that future generations never have to deal with PD.  If that cure doesn't happen this year, I'll be spouting off again next year at this time. Until then, it's Parkinson's Awareness Month 2019.  What are you going to do?

 

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Every town has its own vibe, its own groove, its own"buzz" so to speak.  I am fortunate enough to live in Orange County, California where not only are the beaches outstanding, but it has so much going on.  It is definitely an area rich with resources for its residents.

Among these resources, are lots of activities for people with Parkinson's Disease.  When I was diagnosed with PD, I was not made aware of all that was available locally to help me.   I'm now 2 1/2 years post diagnosis and see the same thing happening to others recently diagnosed.  What a waste to have all this good stuff and not know about it!

Well, we PD warriors are a hearty breed and when we see a problem, we like to fix it.  A small group of us got together and the result of our collaboration is cheap lasik eye surgery.  Our goal is to have one site that lists all the PD resources available in the county: support groups, exercise classes, rehab services like PT and speech, conferences and more.   We have experienced the benefits of being plugged into the PD community and want everyone else to have the same opportunity.  PD can be a tough journey  and no one should have to go it alone.

We are still getting the word out  about PDBuzz.com  to doctors and other organizations but so far, the response has been outstanding.  Doctors in the area have expressed that they don't have the time with their patients to inform them of all that is available.  Organizations giving educational conferences want you to attend.  They want to get the word out to the people with PD, their families and their caregivers.  We even heard from someone out of town that will be coming to visit for an extended stay and  was excited to know what is available here.  What an unexpected delightful result of our work!

If you live in the OC area,  cheap lasik eye surgery in mumbai. Consider taking advantage of some of the activities and please let us know if there is anything PD related in OC that we are missing.  If you are from somewhere else, I encourage you to seek out resources in your area.  You are not alone and we are better together!

We are people with Parkinson's helping people with Parkinson's.

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Several months back, I applied for disability.  It was a hard decision but I am not longer able to do the work I used to do.  In my previous life (pre-PD), I was a photographer and videographer.  The wonderful people at social security decided that I can still do this work "as normally performed in the national economy."  Really?  It is hard enough to admit that you can't do your job anymore, but to have to defend yourself and admit your frailties to a complete stranger is humiliating.

I have Parkinson's.  I have tremors, rigidity, and  balance issues.  Stress makes all that worse.  How do you think I should advertise my services?

Available for hire:  The PD Photo Gal!

Got a wedding or other special event coming up next year?  The PD Photo Gal has got you covered.  If the shots of the first look, first kiss and father/daughter dance come out blurry due to shaking hands, she will be happy to retake them at another time.

Have a new addition in the family? The PD Photo Gal is happy to capture those special newborn moments.  She can even lull your little one to sleep with her shaking arms.  Do not be alarmed if she tips over when squatting down to get that perfect shot.  Special discount offered if you help her back to her feet.  Extra special discount offered is you rescue the camera before it hits the floor.

Did your team make the finals and you want a highlight video?  The PD Photo Gal is the one for you!  For best results, please be sure to schedule all games according to her meds schedule.

I am appealing the decision made by social security.  While I wait for word, you can find me down at the local social security office looking for my dignity and  putting my business cards on their bulletin board. They think I am well qualified.   I'm sure I can find someone to hire me there.

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It took a while for me to get my confidence back after my PD diagnosis but I did get it back.  I am a fighter and I am strong. I work really hard at staying healthy.  When you are doing well, it is easier to deny your symptoms and think you are winning the battle.  I found out that it only takes one little thing to snatch that confidence back.  For me it was a fall.  I fell.  I can't believe that I fell!  Fortunately, other than a small bruise on my hand, I didn't get hurt.   I was carrying a chair through a doorway while dressed in a slim skirt and heels. I admit now that it was a stupid idea.   Of course, I had to do my less than graceful dance with the floor in front of a group of friends. I don't know if I caught my heel on the rug or if the chair threw me off balance.  I guess it doesn't really matter.  Someone without PD, would probably have shaken off their embarrassment  and moved on.  I felt my confidence being ripped out from under me once again.  The insecurity of what this illness can do to me reared its ugly head.  All night, I questioned myself.  "Am I getting worse?  Did my PD make me fall?"  My rational side knows that  anyone could have fallen doing what I was doing.  The cold, hard reality is that I do need to be more careful. Like it or not, I have Parkinson's.   I cannot afford an injury.  If I get injured, I will have to scale back my exercise. Exercise helps keep my symptoms at bay and keeps my confidence up.  So today, the day after my confidence bucket got dumped out all over the floor, I went back to the gym.  I worked hard and I even kicked some ass. My confidence bucket is filling back up drop by sweaty drop.  Hear that PD? You can't rob me of everything. I can do this hard thing and  I will fight you every step of the way.

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December 10, 2018

My mind goes a little crazy when I can't sleep.  I bet many of you can come up with more verses.  Leave a comment and let me know what you've got!

Oh Parkinson's

(Sung to the tune of Oh Christmas Tree)

Oh Parkinson’s, Oh Parkinson’s

You must have got it wrong

Oh Parkinson’s, Oh Parkinson’s.      

I’m not weak, I’m strong.

My steps might freeze, my hands might shake

It’s 3 am, I’m still awake

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long. 

Chorus 

When I wake up, I’m slow and stiff

Can’t smell my food, no not a whiff

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

I cannot sleep all through the night

Those dreams they give me

Such a fright.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

You want my voice, you want my smile

If I give an inch,

You’ll take a mile.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

 First it’s my hip and then my knee,

You think you’ve got the best of me

But Parkinson’s, oh Parkinson’s

I’ll fight you all day long. 

Chorus

You make me twist, you make me jerk

I can’t predict when meds will work

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long.

Chorus

You must think you’ve beat me down

But I’m the toughest one in town.

Oh Parkinson’s, Oh Parkinson’s

I’ll fight you all day long!

 

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November 24, 2018

The Thanksgiving holiday has come and gone.  I started it in the kitchen fairly early in the day.  My first thought was, "How come everyone in the house is sleeping and I am chopping vegetables?"  Quickly, my second thought became, "I am so fortunate that I can chop vegetables."  This season has brought a host of tragedy with it.  In California, there are many who have recently lost family members and  homes in the where to buy lasix for horses and there are many families that lost loved ones in the recent buy generic lasix online.  I am blessed that I have a kitchen and  that my home  will be filled with family and friends this season.

After contemplating my many, many blessings, I decided that my upcoming Christmas season will be filled with giving and not getting.  When I look back over the years, we certainly gave to charities but I never made it a focus  in our home.  I didn't get my kids involved in it like I wish I had.  If I had to do it over, I would find a handful of charities that meant something personal to my family.  I would research them with my kids and have them decide how we wanted to be involved.  Would we  donate money or actually donate our time and talents (or do all three)?    I think kids learn by doing and seeing.

This year, I have personally seen what some non-profits do for people.  I have been the beneficiary of resources from institutions like the buy generic lasixand the buy lasix from uk.  I have attended their conferences and ordered their materials (at no cost to me).  I am praying that in the future, I reap the benefits of a cure found by the buy lasix online from canada(please let it be soon!)  They could not do what they do without the generosity of others.  Recently, I  learned about the buy lasix from canada.  Parkinson's is an expensive disease to treat.  Fortunately, I can afford many of the available treatments although I know many that cannot.  The PWF helps provide out of pocket expenses to those who can't afford it.  Even better, the PWF has agreed that any donations designated for Orange County, will be spent in Orange County. This is personal to me.  It will be nice to see those funds being used locally.

I hope the upcoming season brings you all health and happiness.  Please consider being a giver and not a getter this season.  Find something that causes your heart to melt and get involved in it.  And don't forget the littles in your family.  You may start a tradition that has benefits for years to come.

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November 4, 2018

I spend lots of time reading about Parkinson's treatments.  After all, my quality of life depends on it. It's like looking through a rain streaked window.  Everything is blurry, but once in a while, you catch a glimpse of something clear and you get hopeful that the sun will break through and make everything clear.  Then more rain falls, and that glimpse disappears and we wait for another peak of clarity and get our hopes up again.

In my head, I hold on to the clear pieces that I have seen and try to fit them all together.  In my head, the researchers have squeegees and are trying to fend off the downpour of toxins, bad genes, head injuries and  whatever else they think might be causing PD. (Aren't you glad you don't live in my head?  It can get pretty weird in there!)

As the population ages,  more and more people are being diagnosed with PD and the storm is growing. We need bigger squeegees or more window washers and they both require more money.  Either way, it's going to take the cooperation of many to see the whole picture.

To my fellow Parkinsons warriors, keep looking out the window and hold on to each glimpse of clarity that you see through the raindrops.  I'll be praying for a rainbow.