Time for a change

The last few weeks have flown by.  As I wrote last week, a dear friend passed away after a very brief (5 weeks) illness that left us stunned and numb.  Mr. Twitchy and I got home from visiting her in Arizona on Monday, and left again on Thursday for a wedding in Richmond, VA, and then to Chicago on Sunday to visit our grandchildren there.  Home in LA the following Thursday and thankfully had the chance to hug our one-month old granddaughter as soon as we arrived.  That was definitely just what the we needed since we were off to Phoenix again on Saturday for the memorial service on Sunday.  Looking forward to being home all summer, and staying off of airplanes.

Trying to keep it all together has been a challenge.  Wacky schedules. On and off planes and long drives.  Not enough sleep or exercise.  Meals, good and bad, and not necessarily nutritious.  This is not a good thing for anyone, much less those of us with chronic illnesses.   We are both exhausted.  So of course, my tremor has come back at inopportune moments.   Fortunately that is the worst of my symptoms, but the fact that it has come back again  to some degree is very disconcerting.  I was hoping that I could continue doing well for years.  I have to get back on track with exercise, which seems to bring more benefit than anything else.

When speaking to my therapist last month about the return of some symptoms after 41/2 blissful years on Sinimet, I said I felt like I was falling off a cliff.  He described it differently, that it has actually been a slow change, but suddenly enough of a change to be noticeable.  Kind of like when the PD symptoms first showed up 10 years ago. Whatever it is, I don’t like it.

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Don’t fall off the cliff!

So it is time to do something about it.  Fortunately, several other big commitments have come to an end and I no longer have those stressors.  I need to look at my diet and make positive changes, increase my exercise – both the amount and intensity, and find ways to relax that do not include playing games on my phone.  I have done it before, so I can do it again.   Maybe I will even try to be a PD Warrior!  Anyone want to join me?

We should be thankful for what we DO have

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.”   — Marcus Aurelius

It has been a tough week.  Mr. Twitchy and I lost a dear friend.  Younger than us.  Vibrant. Active. Beautiful.  Smart.  Talented.  Multi-talented.

Just two months ago, we saw her perform the lead role in a play in the Phoenix area that she also produced and directed.  She was awesome.  At the time, we noticed she had a little cough, but so do we all from time to time.  A few weeks later she started feeling some pain in her stomach, and was having moderate problems breathing.  Her doctor did her blood work and, while not perfect, there was nothing alarming.  She was scheduled to see him again in about a month.

Then she and her husband, a friend of almost 40 years, took a trip to California.  We were supposed to see them but they had to cancel.  Her abdominal pains and breathing issues had become so severe that they cut their trip short and went back to her doctor.  He put her in the hospital immediately.  Within days she was diagnosed with a particularly nasty and aggressive form of lymphoma.  In another 10 or so days, the lymphoma had won.  She went on hospice care this past Monday and passed away Wednesday morning – about 4 weeks from feeling mostly normal to being gone.

For some of us Parkies, our disease is truly disabling and life altering.  For others of us – myself included – the disease is mostly just an annoyance.  But whatever our individual level, it can be easy to fall into the woe-is-me trap, because we know we will never be fully “normal.”   We just have to be better and stronger than that.  We must focus on the quality of life we still have and can enjoy, rather than focusing on our regrets of what we no longer have.

Regular readers will remember that I have previously written that it is ok to have the occasional pity-party and cry if you want to over the portions of our selves that we have lost.  Just don’t make it a habit. We have to pick ourselves up and return to fighting as hard as we can to maintain as much quality of life as we can.

As much as anything, that is what this week’s loss has snapped so clearly back into focus.  It should not take the loss of a loved one to remind us that, while we deal with our limitations and while we still hope for a cure, we can never stop the fight to continue to live lives that are as fulfilling – and as joy-filled – as possible.

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Reaching out to the Newly Diagnosed

At least once a month, someone contacts me to talk to them, their co-worker, relative, friend or acquaintance, who was recently diagnosed with Parkinson’s Disease.   I always try to find time to talk to the newly diagnosed because it is so important for them to connect with someone who has Parkinson’s as soon as possible.  I am not a psychologist or a social worker, but I have lived with PD for almost 10 years. As a result, I have a different perspective to bring to the table.   It makes such a difference to speak to someone  who has been living with the disease, who can understand what you are going through and help guide you through the labyrinth of PD terms, treatments, and more.  But most of all it helps to see someone who is thriving in spite of the disease.  Most people have never met anyone who is living well with PD, so they are scared about the future, the great unknown looming before them.  It can be so overwhelming.  I wish there had been someone for me to talk to when I was newly diagnosed.   Instead, I had to rely on the information I could find through books and the internet.  And not all of that is very reliable.

PeanutsLucyDoctorSo how much did you actually hear after the doctor said those three little words:  “You have Parkinson’s”?  If you are like most people, you did not hear anything else for the rest of your appointment.  Your doctor hands you a prescription and maybe something from the Fox Foundation to read, and says come back in three months.  You get home and you have no clue what the future has in store for you.   The three months until your next visit can seem like years when you finally start thinking clearly enought to realize you have so many unanswered questions.  This is the time when having a patient mentor to talk to is so important.

A patient mentor can help you ask the right questions on your next visit to the doctor. They can empathize with you because they have been there too.  Often, a newly diagnosed Parkie is much more comfortable speaking to another Parkie than their doctor.  The patient mentor can suggest strategies that make life easier.  And they can help make suggestions for what to ask at that next appointment with the doctor.

I met with someone yesterday who was diagnosed a few weeks ago.  I have actually known this woman for years, and know about the back problems that she has had.  She started asking questions about medication, exercise, anxiety, what to expect, what resources are available to her.  Her doctor said to exercise, but did not give her specific instructions about how much and what type.  We talked about what would interest her and I was able to give her some options that would work, all the while thinking about her limitations because of her back.  We then discussed the need for her to contact her doctor before her next appointment in two months.   She has a lot of questions for him, but was afraid to call now.   I suggested that she either call him or email her questions to him now, because she really needed the answers sooner rather than later.  Like many patients, she was intimidated by her doctor, and was afraid to ask for help when she really needs  it.  For a newly diagnosed Parkie, this can only increase the anxiety that the diagnosis itself brings to the picture.  It is important to remember that this is a doctor whom you will have a long term relationship with, so you need to be comfortable reaching out to your doctor between appointments.

I know that some communities have a network of Patient Mentors for the newly diagnosed to reach out to.  If you don’t know who to turn to, ask your doctor if she can have someone get in touch with you.   If she cannot help you, reach out to a local support group leader or a national PD organization.  Many of the Parkinson’s organizations now have a  Patient Ambassador program and can refer you to someone who can speak to you.  You don’t have to go through this alone.  We are all there to help each other on this journey we call Parkinson’s.

 

Don’t forget to write your message of hope to be included in the Soaring With Hope for PD project which will be displayed at the WPC in Kyoto next year. Click this link and enter your country and message.  And make sure you click on my name for the Blogger’s Challenge.  Go to last week’s post for more information.

 

 

The World Parkinson Congress is just a little over a year away

At the WPC you can meet advocates from around the world.  Learn from them.  Be inspired by them.  Come away with life long friends.

Jean Burns

It is time to start thinking about going to the next World Parkinson Congress in June 2019.  As an official blogger for the WPC, I have been involved in meetings and planning for over a year now and have much to share with you.

First, if you have never attended the WPC, I can guarantee that you have never attended a meeting like this.  People with Parkinson’s (PwPs) can attend any session they are interested in,, from the most technical scientific presentations, to chair yoga, meditation, sessions on nutrition, sex and PD, the latest Marijuana research and more.  Everyone has an opportunity to contribute something to the WPC, there are song competitions, video competitions for pros and amateurs.  You can even submit an abstract or poster for consideration in the Poster Display as a PwP.

There are also opportunities to volunteer at the Congress.   You can spend a few hours volunteering on-site, or apply to become a Delegate Leader to work with the thumb_20170228_124918_21962.jpgWPC to coordinate a group of people interested in attending the Congress from your area.  There are travel funds available for those who need them, to go to Japan.  Sales of Parkie the Raccoon and other items benefit the travel grant program.  For more information on the WPC 2019 click here

I like to call Soaring with Hope for PD our “Ice Bucket Challenge” for PD awareness

So what can you do now to get involved?  Participate in a world-wide effort to bring together People with Parkinson’s, their care partners, health care professionals, etc., to create an art installation for the WPC titled Soaring With Hope for PD.  Three friends of mine from Southern California, Naomi, Clara and Amy, have created an amazing project, which I like to call our “ice-bucket challenge” for Parkinson’s Awareness.

To spread the word about Parkinson’s Awareness, the official WPC Bloggers are in a challenge to collect your messages of hope for the WPC.  We want to collect a total 10,000 messages, each of which will be printed onto a hand-folded origami crane. The 10,000 cranes with messages will be displayed as a magnificent art installation at the June 2019 WPC in Kyoto, Japan. All you need to do is click this link and enter your country and message.  If you have multiple messages, you can click and enter each message separately.   And make sure to select me as your BLOGGER.  The deadline for the challenge is July 31, 2018.

 Thank you for your messages of HOPE, raising awareness for PD globally, and for helping me with this wonderful challenge.

 

I will be sending out more information about the World Parkinson Congress as it becomes available.  I hope to see you next year in Kyoto!  Arigato!

 

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Buyer Beware – the Snake Oil Salesmen are Back

Letter from Mark Twain to a snake oil peddler: “You, sir, are the scion of an ancestral procession of idiots stretching back to the Missing Link”

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Did you know that the latest snake oil salesman is lurking in your computer?  Yes, they are baaaaaack.  Buyer beware.

About every 2 months, I get a comment on my blog from someone claiming their mother/sister/brother with Parkinson’s was cured by a “miracle product” that was made especially for Parkinson’s.  In fact, 3 have been identical except for the name of the person making the comment.  An herbal company in South Africa or Europe or somewhere else is offering this miracle drug.  Of course it is not a miracle drug and they will charge you an exhorbitant price for it, which you will be happy to pay if you believe their hype.  If you go to the company’s website, you will see that the same “cure” is offered for any number of conditions, not just PD.  Others post “cures” or products in Parkinson’s Facebook groups that are dubious at best.  But they get wide distribution this way and can reach out to Parkies who are desperate to make their situation improve, without real “drugs” of course, because by taking those drugs they are admitting that they are “sick”.

So how do you know what is real and what is snake oil?

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First, ask your Movement Disorders Specialist or Neurologist if they have heard of this product.  If they don’t know about it, ask your pharmacist.  They can look at the ingredients and give you a better idea about whether the product is legitimate or not.

Often these “cures” are just a combination of supplements that you may already be taking, but because they are packaged together as a “cure” the company will charge 3-4 times what you would pay at the local drugstore when buying the individual products.  Then there is the issue of the quality of the ingredients.  With any supplement that you take, you need to be aware that the actual amount of the calcium, B12, Co-Q10, etc. can very widely from brand to brand.  Again, check with your doctor or pharmacist about the quality of the supplements.  They can hopefully steer you towards the more reliable brands.

A Quick Google search turned up several websites that you can check for recommended brands.  The three that seemed most reliable are  Consumer Labs,  Labdoor  and Quality Supplements

And then there is also the question of toxicity and interactions with the Parkinson’s drugs that you are already taking.  Before taking any supplement, read warning labels about interactions and if there is any question, check with your doctor or pharmacist to make sure that it is safe to take with your PD drugs.  The last thing you want to do is end up in the hospital from a bad reaction.

The bottom line is this.  Don’t fall for anything that promises you a cure.  There are NO known cures for Parkinson’s at this time.  Be critical about what you read.  Ask questions and most of all, be aware that someone is trying to make some money off of your misfortune.  The snake oil salesmen have been around for thousands of years and unfortunately, are not going away any time soon.