What do you get when you cross Parkinson's & Dystonia?

You get a boat load of meds and a bit pissed off!  Dystonia & Parkinson's are both Degenerative Neurological Disorders.  You can get Dystonia as a disease on its own or as a symptom of Parkinson's.  For some reason people with Young Onset Parkinson's are more likely to develop Dystonia.  YAY there's that gift that keeps on giving right? 

It's been 2 years and 36 days since I was officially diagnosed with Parkinson's.  2 years and 7 months since first being told 'I think you have YOPD" and subsequently starting treatment.  However it's been 3 years & 4 months since my symptoms started & the road to figuring it out began.  In that period of over 2.5 years since starting treatment I'm now on my 3rd medication change/addition or increase.  A tad bit frustrating to say the least.  However the silver lining this time around was I was expecting it, it wasn't a denial based shock for the first time in my 7 trips to the Saint John Regional hospital for diagnosis and/or follow up appointments.  Sadly I've gotten worse at least half the time.  Of course I've gotten worse it's degenerative, progressive, those words we Parkie's hate because it's the one time "progressing" isn't a good thing.  It's not like playing the guitar and progressing that's great, this not so much. 

This bi annual 704km nearly 12 hour day that I make twice a year to see my Doctor was different.  It was the first time I had a "list" of all the negative changes my body has been having.  The first time that it wasn't him asking a question to discover progression, but me knowing full well I had indeed gotten a bit worse and wasn't in denial about it.  Hate it yes, but not in denial.  My forearms have begun to feel very tight and sometimes pain or ache much like my calves, hands & feet all which have been plagued by Dystonia.  My ring finger on my right hand has started to pull in to the palm of my hand and often will twitch in that direction which is painful.  My right leg has started to have noticeable tremors when standing still.  My right foot started to tingle months ago in between my big toe & next one and up the top middle part of my foot, it now is numb all the time.  It feels like when you go to the dentist and get frozen.  My apathy without a doubt is much worse and I'm struggling with some emotional issues still like social anxiety and my new loss of identity having both my girls in school, being unable to work and home alone.

The long and short explanation of almost all of the above is the continuing gift of Dystonia.  I have most definitely come to the conclusion that although Parkinson's Sucks, so does Dystonia and it in fact can be worse as it's painful.  My forearms are Dystonic and there's a tendon in the right forearm that's significantly twisted and that's what's causing the pulling in of my ring finger.  My caves are so dystonic that although the numbness isn't a result from the brain he figures it's a direct result of the dystonic muscles one of which is likely pressing on the nerve to my right foot.  The increase tremors & stiffness are simply PD itself progressing.  So the result of all this?  Yup, you guessed it my medication alarm will be going off more often.  I'm not getting enough levodopa so I have to increase a full extra dose a day starting this morning to try and keep my dopamine levels more consistent as There's too much time in between doses,  I'm to try that for a week and then call the PD nurse for a discussion on how it's working.  If it's a drastic positive change perfect, if not I must increase my dosage of pramipexole to 3 pills three times a day rather than 2 pills.  If we make that increase it should also help with the apathy.


On a positive note.... because remember even when things are rotten there is always a bit of joy in every day it's just sometimes really hard to find.  However I've been playing the fiddle and taken up the guitar a bit again.  I can't play the guitar long it hurts my dystonic hands but the fiddle has a small neck and I can play it longer.  Since starting to play music I've been doing that at night rather than watching TV after the girls go to bed.  I've noticed after doing that for a couple of weeks that I've been getting more sleep.  Rather than my usual 3-4 hours a night I've been getting more like 5-6 consistently and sometimes even 7.  I asked him if it was a coincidence and he said absolutely not.  That I should continue to play music that there are tremendous amounts of research proving music therapy can be very beneficial in anyone but particularly neuro related sleep issues.  So if you are having trouble like probably 90% of other Parkies sleeping, maybe take up an instrument, or listen to soothing music for at least 20 minutes before bed. 

I shall end on this...  I choose not to throw a pitty party this time.  I choose to remain positive and find the joy I each day.  Our circumstances may be entirely out of our control but our attitude daily is entirely up to ourselves.  Wallowing in your negative circumstances in life whatever they may be will do nothing but make you feel worse and when you have a crap load of rotten stuff to deal with why in heavens name would you want to feel even worse?  It's ok to be pissed off don't get me wrong and I most certainly am often at the cards dealt to me, but that being said life is precious we only get one chance at it and do you want to spend it being angry or do you want to spend it joyfully?  So I shall choose to laugh at the crappy circumstances, make light of my situation because that's just how I deal and I think laughter is great medicine.  I will choose to be grateful for the medication that's available to me that allows me to live my life not without struggles but where I still am fortunate enough that most people don't "see" my symptoms or how I'm affected daily.  If it weren't for the many meds I take I would not be able to walk properly, I would often struggle to get out of bed if I could at all, I would be in severe pain 24/7 and life would be pretty bad.  So if I think of it in that respect I am indeed very lucky and as my many medication alarms go off in the run of a day on my phone I will remember to be grateful for the pills that make my life possible while rolling my eyes! 

I mean really, how lucky am I?  Two beautiful girls to "play" with everyday!

That's a lot of Joy!

If you'd like to know more about Dystonia you can view a previous post about it here: http://natashachronicles.blogspot.ca/2016/05/lets-talk-dystonia.html
Visit a Broken Body's Journey Facebook page:  www.facebook.com/brokenbodysjourney



Brian Grant ~ Life with & Parenting with Parkinson's ~ A candid conversation between 2 Parkie's

I had the utmost pleasure to meet former 12 year NBA player Brian Grant while at the World Parkinson Congress.  On two occasions we had brief conversations and photo’s taken.  I was particularly struck on the fact that despite his insane schedule that week with the congress itself and media given it was happening in his home town, he never rushed a conversation with someone with Parkinson’s that wanted to meet him.  He spoke on a couple of occasions and participated in one of the panel sessions on living well with PD and he was genuine, honest and very down to earth.  I watched from afar on several occasions his willingness to oblige handshakes and photo ops and he was attentive to each person that crossed his path.  I watched this with great respect.  In one of our brief conversations I told him that he was very gracious to the countless people there that wanted to meet him and that I thought that was extremely kind of him.  He told me that when at other public events if he’s tired or his tremors are bad or he’s not feeling great he has the ability to simply leave.  However that at the WPC there was no way he could or would want to do that, he said he respected the fact that people with PD wanted to meet him and speak to him and he appreciated that they wanted to.  He said simply “how could I not take the time for them?” 

 

When I was given the opportunity to “interview” Brian for an article for my blog I was over the moon!  There was no way I would refuse that once in a lifetime chance.  We were originally set to meet in person at the congress to have our conversation however things were hectic for him and I told his assistant that I’d be quite happy to chat with him after the congress was over and things settled down for him.  I was exhausted so I could only imagine how he was feeling given his schedule that week.  And well, it’s pretty cool to be able to say that Brian Grant has my phone number, I’ve told a few people “Brian called the other day we had a great 20 minute chat” Ha!  I’m considering us friends now, but at the very least he’s incredible and an inspiration to the PD community, we are lucky to have such spokes people to bring awareness to the disease, particularly that it’s not only old people that get it like him and Michael J Fox.

 To give you a brief background, Brian was diagnosed with YOPD around 36 years of age, he had recently retired from his NBA career.  It started with a slight wrist tremor while still playing in the NBA where he joked in one of his speeches that upon asking one of the team doctors about it and what it was they simply responded “old age” as when you’re a professional athlete that’s considered old I suppose.  Brian has 6 sons and 2 daughters and has been married and divorced twice.   Below you'll find the questions I posed to Brian.

How did your children handle your Parkinson’s Diagnosis?

My older boys 20’s & late teens handled it alright.  They started to dig into finding out what Parkinson’s is and how will it affect Dad.  When they ask me things I try and be honest and answer as best I can.  I tell them about new meds and things that can help life be better with PD and about dyskinesia’s and other side effects.  They’re at the age where if I say something like that they run to the internet to Google what dyskinesia is.  My now 13 & 14 year old daughters were quite young.  They’d ask ‘why does your hand shake?’ and I’d tell them because I have Parkinson’s.  When they’d ask what that was I’d simply say it’s when your hand shakes.  And at the time they would simply associate PD with a hand tremor.   I always try and be honest with all my kids about it but at the same time I don’t want to scare them.

Do you think overall it’s important to involve your kids in your PD journey?

For me it was important, I can’t really speak for you or anyone else, but for me I found it to be very important because if I’m not telling them what PD is they might go to the wrong web site or the wrong friends.  I want to give them my definition of it and what that means for me, because otherwise they could go to their friend who’s Grandpa has it and what it means to them might be something totally different.  I want to make sure the information they get comes from me.

I even joke around with my daughter sometimes and I’ll say ‘can you get me another sprite’, why can’t you get it Dad? ‘cause I have the Parkinsons’.  I try and laugh at myself and allow others to laugh.  It’s a serious disease but as you know we have a chance to be around it’s not like stage 4 cancer or ALS or something.

Did you get any advice on parenting with PD from anyone you know with PD?

I didn’t get any advice specifically from Fox or Ali or anyone, but who I do get information from is Soania Mathur, a GP in Canada has a couple books out and anytime I have questions about the kids I always refer to her.   (Below you'll see a photo of myself and the lovely Soania www.designingacure.com/)

 

Do you think your Parkinson’s can enrich your children’s lives in some way?

I think it can in some ways because for me up until I was diagnosed I was like everyone else in the world, I was going to live forever, always be healthy but once you’re diagnosed with a life changing disease like Parkinson’s it changes your perspective, in fact it changed mine immediately.  So I don’t want to put that burden on the kids if they ask I’ll tell them but I’m not going to sit them down and talk about specifics right now.  Maybe someday I will as I progress.  They are involved in the foundation I don’t make them go but they attend every event we’ve had and they enjoy it, its fun.  They’ve always enjoyed participating in that stuff.  My older boys when they are home volunteer at any events and things we have.

What advice would you give to someone newly diagnosed with Young Onset Parkinson’s?

I would tell them to take the time for themselves before they try and help everyone else understand what’s going on with them.  If you just get diagnosed other than your partner, they need to know but as far as the kids and relatives and others come out at your own pace.  Unless there’s questions being posed to you, like why do you look like that when you stare at me, or why does your hand shake?  Things that aren’t normal to them and the doors open, then tell them.  But I would advise everyone to do that at their own pace and speed, to wait until you’re comfortable with it before you let everyone else in.

And what advice would you give to someone who is a parent and diagnosed?

The disease affects everyone so differently and we are all in our own unique situation maybe you’re in a marriage or a single parent.  The initial blow is so emotionally heavy, or at least it was for me.  I didn’t want to deal with it right away, but then again I was going through a divorce and was just retired there was so much going on in my life other than my diagnosis.  I will say this, once I was able to explain to my kids what was going on with Dad I felt so much better.  It was like a big weight lifted off my back, I didn’t care if anyone else in the world knew at that time they were the ones that mattered.  I was focused on how it was going to make them feel, I didn’t want them to feel bad or worry.  And another thing I focused on was I didn’t want to embarrass them.  Sometimes when I’m at games  and stuff and I get surrounded by parents talking, I’m tremoring and stuff and in my mind I feel like I’m embarrassing my kid when that couldn’t be further from the truth.  My biggest fear is embarrassing my kids because if I saw that I was it would devastate me.

As you mentioned we are all very different and our Parkinson’s symptoms are often unique.  What are your biggest challenges as far as symptoms go? 

The tremor definitely and my gait.  I’m assuming I’m walking normal but it definitely feels different when I’m walking.  And then there’s depression, I’m on medication for that which has helped tremendously.  Anxiety, here I am a public figure trying to be a champion for this disease and help defeat Parkinson’s and then get this deep anxiety that makes it really hard to go out and speak to people.  I’m sure you understand this (which I most certainly do) but it gets so bad.  My mouth will get dry, my eyes will get dry, and I start to tremor its crazy.

Do you think your career in the NBA can help you in living your journey with Parkinson’s?

It absolutely helps me; more importantly given I’m a retired professional athlete I know how to be in tune with my body where as someone else with PD may not be.  When something starts to happen with me that isn’t normal I think that must be Parkinson's.  I know how to train which can be a curse too, I know how hard it is I know before I even start to do it.  Sometimes I’ll think to myself I don’t have to do that, I don’t have to be in tip top shape.  I don’t know how to just coast and how just a little bit each day can be such a help, no no I’m full bore ahead.

I was watching an older interview you had done where you discussed that you weren’t sure “they” wanted to find a cure for Parkinson’s and other diseases given there’s so much profit in medications for our disease.  What are your thoughts on that today?

I think a lot of people make those statements, I still think everyone is trying to find a cure.  It doesn’t benefit drug companies to find a cure pushing forward.  I think they have their place within the Parkinson’s community because without them a lot of foundations couldn’t get their programming off the ground.  Not to mention we need their medications in order to survive and I’m thankful for those medications and hopefully someday when there is a cure they are instrumental in putting it out there.

What do you hope you can continue to achieve with the Brian Grant Foundation moving forward?

We’ve gone through some changes and they’ve been very good.  Right now our programming we have is our wellness retreats and our boot camps and also our nutritonal cooking classes.  Those are the things we are trying to roll out.  Our goal or at least my goal is in the next 5-10 years to be able to roll these things out in other cities where we go through things and organizations in those cities can adopt them.  That’s my dream!

 

We discussed anxiety and depression in a bit more depth and in asking me if I experienced it I told him that I never had an anxious bone in my body before, but now I suffer with what I refer to as social anxiety and there are times it can be quite bad, cause me to withdraw and yet be lonely at the same time.  I told him that I find it difficult to deal with the aspects of the disease that change your personality, that change all the parts of you inside that you always knew yourself to be.  And he told me how he feels the exact same way, that when he gets around a bunch of athletes or friends he was always in tune to the moment and what had to be done or what he was up to.  And the thoughts of depression or anxiety happening to him never occurred to him that it wasn’t that he felt negatively towards people who had those issues but he just knew it would never happen to him, until it did.   And now he has to change the way he thinks about all those things because there’s no surgery or treatment for these aspects of Parkinson’s disease like there are for the motor symptoms.  He explained how well depression medication works for him and made a huge difference but nothing truly changes how our identities and what we’ve always known to be ourselves being altered permanently. 

We also discussed candidly Apathy and I told him how my get up and go has gotten up and left and how it’s extremely difficult if not impossible some days to get motivated to do something.  That things I love I still procrastinate on to the final hour and I was curious if he like many others had issues in this area.  He told me that he finds it very hard to get motivated at times and he was often MIA in his own life space.    He spoke of how he always put his hand in his pocket or sat on his hands and all the things many of us do to hide our tremors and that a point in time hit when he told himself he wasn’t going to do it anymore that he didn’t care what people thought, but clearly he did and still does.  So sometimes it’s hard to get out there and be motivated when you want to do something when in the back of your mind you’re struggling with other things too. 

Our conversation ended with him asking me how long I have been living with Parkinson’s and a bit about my life which I thought was so kind of him.  I got the feeling that like myself this wasn’t an “interview” like thousands he had done before.  This was two people living with Young Onset Parkinson’s Disease, two parents trying their best to be the best they can be for their kids; two ‘young-ish’ people fighting a disease for a very long time to come that were simply having a conversation about life with Parkinson’s.  Or at least that’s certainly how he made me feel and it was pretty awesome.  We talked about how we are lucky, I believe we share the same opinion on that and that yes we have PD but it could always be worse.  He truly is an amazing man and a wonderful advocate and spokesperson for the Parkinson’s community and I’m very grateful to have had the pleasure of meeting him, speaking with him a couple of times at the World Parkinson Congress and having this lengthy conversation over the phone with him.  We ended our call with him thanking me for following his foundation and for writing a blog and told me to keep doing what I’m doing.  And that nearly brought me to tears hearing it from him.  How incredible and gracious is he? 

You can find out more about Brian & the work his foundation does at www.briangrant.org

If you look closely you can tell I'm wearing heels the second time

I spoke to 6'9" Brian Grant in Portland!  Ha! Ha!

 

 

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