Has the reality of Parkinson’s disease got you feeling down? From the moment you open your eyes in the morning, you can feel the grasp of Parkinson’s pressing down on. Every limb feels heavy and stiff. You struggle to roll over in your bed as you glance at the clock. It seems like time continues marching on without you… as you lie there, trying to find the motivation to move. You’re uncomfortably conscious of the worrisome thoughts that fill your head… why me?
You slowly pull your rigid body out of bed while trying to keep your eyes open. Sluggishly, you begin to stand up, that’s when you feel the pain. The sensation of sore muscles, tender joints and unbendable tendons take over. You take a step, unsure if you can trust your own body. It’s almost like you were abducted by aliens in the middle of the night, and they accidentally returned you to earth in the wrong body. But you take another step because you know that your salvation lies in a little yellow pill called Sinemet… why me?
The rest of your day is filled with modifications, adaptations and avoidance. Activities that once came with ease now require mental focus and leave you feeling fatigued. Your day revolves around pills. But it’s not enough just to swallow the pill. Like a sick joke, you’re unpredictable body also controls the absorption of your medication… Why me?
You avoid making plans with friends because you don’t know how you will be feeling at any given time of the day. Predictability is gone. Staying at home feels safe. You don’t have to expend energy trying to look normal, because you’re comfortable in your home and your dog doesn’t care if you have dyskinesia… why me?
Exercise becomes so difficult, that you start missing your weekly fitness classes. Now your family is noticing your withdrawal from life, so out of concern, they push you to do more. This points out your shortcomings and you begin to feel resentful of their well-intentioned requests… why me?
All this avoidance changes us into victims. We can feel that everyone is against us, so we push back, causing resistance. Now we find ourselves avoiding anything that could be helpful. We feel alone, abandoned and ready to mail out invitations to your pity party… why me?
Now before you jump off a cliff… there’s hope and it comes from within in you. Stop being a victim. Parkinson’s does not define you. You must shift your “Why me?” to “Try me!” It might be difficult to start thinking this way, but watch what happens when you change your negative thinking.
Has the reality of Parkinson’s disease got you feeling down? From the moment you open your eyes in the morning, you can feel the grasp of Parkinson’s pressing down on your body. Every limb feels heavy and stiff. You struggle to roll over in your bed as you glance at the clock. It seems like time continues to march on without you… as you is lay there, trying to find the motivation to move. You’re uncomfortably conscious of the worrisome thoughts that fill your head.
You have begun the day with a disadvantage, but you have the rest of your day to find moments of greatness… Try me!
You slowly pull your rigid body out of bed while trying to keep your eyes open. Sluggishly you begin to stand up, that’s when you feel the pain. The sensation of sore muscles, tender joints and unbendable tendons take over. You take a step, unsure if you can trust your own body. It’s almost like you were abducted by aliens in the middle of the night, and they accidentally returned you to earth in the wrong body. But you take another step because you know that your salvation lies in a little yellow pill called Sinemet.
You live in a time where there are the most effective treatment options ever created to battle Parkinson’s disease…. Try me!
The rest of your day is filled with modifications, adaptations and avoidance. Activities that once came with ease now require mental focus and leave you fatigued. Your day revolves around pills. But it’s not enough just to swallow the pill. Because like a sick joke, you’re unpredictable body also controls the absorption of your medication.
Modifications and adaptations are tools that help you be the best you… Try me!
You avoid making plans with friends because you don’t know how you will be feeling at any given time of the day. Predictability is gone. Staying at home feels safe. You don’t have to expend energy trying to look normal, because you’re comfortable in your home and your dog doesn’t care if you have dyskinesia.
You have a strong Wolfpack who understands your limitations and is willing to meet you where you’re at… Try me!
Exercise becomes so difficult, that you start missing your weekly fitness classes. Now your family is noticing your withdrawal from life, so out of concern, they push you to do more. This points out your shortcomings and you begin to feel resentful of their well-intentioned requests.
You know exercise is key to slowing the progression of Parkinson’s disease and you see your family’s gentle push comes from a loving place… Try me!
All this avoidance changes you into a victim. You feel that everyone is against you, so you push back, causing resistance. Now you find yourself avoiding anything that could be helpful. You feel alone, abandoned and ready to mail out invitations to your pity party.
You are not a victim of your Parkinson’s. You have the power to accept the support and love given to you. You mail out your Parkie Power Party invitations… Try me!
Restructuring your attitude and mindset takes time. It doesn’t come over night. Practice makes perfect. You have to work on this, it won’t be easy. Start with small shifts in your thinking and then work your way up. Recondition your negative reaction to something more positive can change your whole look on life. Try me!
I was on a roll (not physically – can’t even roll over in bed anymore) on the proverbial vicious cycle of not exercising because of the pain and stiffness, and becoming more out of shape, so I would eat chocolate and ice cream to medicate myself, and repeat the cycle. But this year I have sensed that I am close to a tipping point where if I don’t stop the cycle now I will fall down and never get up again. I have had to call paramedics at least a dozen times this year to get picked up – literally. Fortunately, I live in Canada, where any service that your doctor deems medically necessary can be yours freely, but you need to ask, and ask,and ask again. So I asked if I could have free home care to come and do my physiotherapy exercises with me, so that I have to do them. It’s like I know that I will feel better when I do it, but I still couldn’t motivate myself.My physiotherapist (a service that I asked for) told me that my lack of motivation is part of the disease progression, and that I qualified for the extra help.
Karen,
That is amazing that you were able to get some support. I wish they had something like that in the US. Keep pushing forward and remember that showing up in half the battle. Good Luck! Let me know how you’re doing with your new physiotherapist. Keep us posted.
Great Blog, and how true, i admit that I played the victim when initially diagnosed, but found that the exercise made me feel better, and I continue to coach and have taken this an opportunity to teach about adversity. That adversity with the right mindset can be overcome. Thank you for this it was awesome reading it, and seeing myself in each paragraph.
Curtis,
Thank you for your kind words. I am happy to hear that you are enjoying my blog.
Thank you Allison for the positive vibes…..I’ve been up and down with my feelings of having Young Onset Parkinson’s, diagnosed at 33, having DBS in October 2019 after enduring months of severe Dyskinesias and medication ineffectiveness at lower doses, healing from DBS and trying to be patient with the programming process, and having symptoms come back and still medication dosage at the level that keeps me from having Dyskinesias but either doesn’t kick in or most of the time wears off early! I’m on Rytary which is the extended release of Sinemet…why they don’t just call it Sinemet ER I don’t know….I don’t know what else to ask for or suggest to my movement disorder Neurologist….he says just be patient with the programming but I’m trying to work full time, raise a 3 1/2 year old beautiful little blessing of a daughter, enjoy my days with her and not have everything just absolutely drain every bit of energy I have! I am staying positive but every so often those poor me, angry feelings come over me….
Shannan,
I’m sorry to hear about your struggles. There is a Sinemet ER and Rytary. Rytary has various beads inside the capsule that are timed released. So the thought is that you can get a boost with the quick release beads and then a timed-release with the remaining beads in the capsule. Sinemet ER has a component in it that slows the break down of Levodopa… which the goal is to stay in your system longer. Hope that was not too confusing.
I agree with your Neurologist, it’s just going to take time to figure out the right cocktail mix and the perfect programming for you. Is Dyskinesia the most bothersome symptom? You could also add in something like Gocovri or Amantadine. This has helped me immensely. Thanks for keeping me posted! Good Luck!
Gocovri and Amantadine didn’t work well for me…a lot of medications make me nauseous or have no appetite. I tried both. The Dyskinesias were so bad it was like I was doing an aerobic workout, breaking out into a sweat from moving so much, losing weight rapidly because I was burning calories faster than I could take them in, and throwing my head and upper body which was killing my neck and back. There were days I’d literally have Dyskinesias all day long with a couple breaks for like a 1/2 hour or so. It was bad!
Shannan,
That’s a difficult place to be in your life right now. It’s amazing how quickly you can go from being Dyskenitic to feeling slow and rigid… It’s a cruel joke.
And no your explanation of the 2 medications was not confusing. It was actually the best explanation I’ve ever gotten. I knew about Sinemet IR..I still take that every day along with the Rytary. I knew about Sinemet CR …I was on that before switching to Rytary….is that the Sinemet you are referring to or is there a 3rd one Sinemet ER?
Shannon,
The third medication I was referring to is Stalevo. You can ask your Neurologist about it. You can also look it up online… it’s just a suggestion.
Well done Allison!!! I’m going to keep this for those days when things get tough. Thank you for making a difference to me and all the Parkies!!😊🌷You are the 🌞sunshine on a cloudy day!
Thank you Beth! That just made my day!
I manage to go about the day pretty good. Life would even be better if could get some sleep!
K
Kathy,
Sleep can be a little tricky. I’m sure you’ve tried all the sleep aids and melatonin… I hope you get a cat nap in today!
You didn’t mention your personal nurse Crash. That’s quite a loud motivator.
Dad,
You’re telling me! And soooo demanding!
What a wonderful post!
Thank you, Dale!
Hi Allison – Excellent blog. I push your blog to every new member of our support group in Southern Maine . You are very courageous and an inspiration to us all. This year our group of 10 riders – Doc’s Flock for Fox -raised over 7,000 $ for the Michael J Fox Foundation.for PD research via the annual NE Parkinson Ride in Maine .This past September 1300 bikers garnered a total of 1.3 million dollars.- the largest single day fund raiser for the MJF Foundation.
Wow Conner! Thant is amazing. I don’t even think I could ride for a block! Thank you for sharing my blog!
Thanks Alison for the positivity 🙂
You are awesome! Did you see the news yesterday Ozzie Osbourne disclosed that he has Parkinson’s on GMA. It was very touching, his family was on too, amazing family. Have a great day I know I will. Cheers Al
Al,
I did hear about it, but I haven’t seen the clip yet. I will check it out! Another celebrity joining the Parkinson’s club.
Thank you for another upbeat blog. Just read it after lunch waiting for drugs to kick in, toes are curled and so is hand. What gets me moving is my husband knows my love of refurbisbing furniture and he has been helping me on my victrola into kitchen island adventure. He knows if he starts on it without me , I will follow, curled toes and all. It is so important that no matter what,you keep moving. It’s the sitting in one spot that stiffens my body. So, keep up the good work because smiling is the best !
Carla,
That is so sweet that you guys are working on refurbishing the kitchen island together! I can’t wait to see how it turns out. You said it best… keep on moving!
Wow! You nailed it. Written so well. Exactly how I feel.
Delaine,
Happy to hear my blog was helpful!
loved your blog…….everything was so true. I feel that exact way!!
So very true
Great blog. Knowing what others are going through, such as yourself, and the way they deal with it really helps as I consider mine as minor in comparison. My greatest inspiration was my first wife and being with her through her battle with MS and the strength that she showed and the strength she gave us has definitely helped me to deal with this.
Thank you and God Bless.
Such a terrific blog today…you basically discribed almost all my mornings. The soreness from my calf muscles and my forearms. It feels like I ran 5 marathons the day before while lifting weights. My feet shufling across the floor. Struggling to roll over in bed because my shoulder is so sore which then wakes me up and then my thumb and fingers start their tremor thing again and bang here we go again with only 3-4 hours sleep..
I completely agree about having the right attitude and staying positive. I try everyday, however trying to continue working a 40 hour week is sometimes just too much.. I sometimes wish people could see me at 6 in the morning before the sinemet slowly starts kicking in by 6:45 or whenever it wants to start doing its job.
Tomorow is a new day and like every other day i will make the best of it because my wife and kids depend on me. I really enjoyed your blog today as i always need another reminder to keep it positive and keep smiling. I am so grateful for everything in my life. Including the Perky Parkie.
You are appreciated.
Gary..
Thank you for your kind words Gary. The morning sore muscles are awful in the morning. And you described it perfectly…. feeling like you ran a marathon. Still working is rough, keep up the good fight!
What a wonderful read. My husband (Dave Morse) has Parkinson’s. You couldn’t have summed it up better. So, so helpful. xx
thanks for a great post!
I agree that the’ blog is great, and everyone’s comments are good, too. My new morning ritual is to put on Celine Dion’s CD, “A New Day Has Come,” and dance to the first two songs. It perks me right up:-) Good luck everyone!
Great song!
How is this for a positive outlook? I got some great sleep during my colonoscopy today! Lol
I enjoy your blog, keep it coming!
Lol! Get it where you can!
Thank you, Allison for your blog this A.M.. You always hit it spot on. I always feel better after my morning walk with my beloved friends and then a hot cup of coffee when I get home. But there are days when I think ” I am to tired to go this morning or it’s too wet out,” but I try not to listen to those negative murmurs, not always successively. It is always a struggle with just staying home all day or force myself to get out and just be out there. Thank you for the encouraging words.
Happy to hear it brightened your day !
Thank you so much for the pep talk ,some days are hard but you have helped see it in a positive light. I have Parkinson but Parkinson doesn’t have me.
I do enjoy the comments made. Yes every day is a struggle. I don’t have relief from .Sinemet. So will ask consultant if he will try something else. My husband came with me on my scooter, even that I can’t do for long. My head feels horrible. All I would like is a bit of hope. Well sorry to go on.
Feel free to vent here. You have much support from many of us who struggle with the exact frustrations. Are you seeing a movement disorder specialist? And are you aware of all the treatment options available to you? This might help when finding your special cocktail of medications. Sending you all positive thoughts.
Having someone like you take the time and effort to reach out. It may be the only way to find someone who can relate to how you think and feel. So look, search for another way to find what you need! Try me!!!
It’s the turning over in bed malarkey that gets me, what is that all about
You’re sheets are acting like a little Diva!
I’ve heard satin sheets can help you roll over in bed. Haven’t tried it because satin would also feel cold and being chilled/cold makes me miserable and causes pain.
Love your Blog! I can learn more here than from my Dr. Since I study about PD when I can’t sleep, (like every night, LOL) when I visit my Neurologist he always asks me what new things I’ve learned lately. So why am I paying him? Oh, that’s right, I need my drug dealer….but let me say here how grateful I am to have C/L! It’s not perfect but at least we have some relief from those unrelenting symptoms. I must also say that I am blessed to have a loving and supporting husband as my caregiver and a close relationship with Jesus. Jesus is right by my side every step (big or small step) of the way. Just keep that dialog going all the time, like you just never hang up! Last Tues my husband and I were on vacation in Orlando, FL and we were going to go visit a friend in the hospital an hour’s drive north when I noticed that he was perspiring profusely! I would wipe his forehead and it would immediately bead up with sweat again. With his history of heart surgery (2016) and a couple other close calls I soon realized that I had to get help and soon. He’s a big man of 6′ and I’m 4’11” so I called 911 and within a couple minutes our vacation condo had 5 men from security and EMTs were soon arriving. The EMTs quickly realized that they should transport him to the hospital for testing and I agreed with the decision. So now, MY CAREGIVER is on a STRETCHER and we are 20 hours from home (our support system) and the C/L meds I took at 5:30 a.m. are so burned up and gone! I feel my body shaking all over from the stress and I don’t usually have a tremor. Trying to push terribly scary and morbid thoughts out of my head so I could function reasonably and not be taken out in the next ambulance, I told Jesus that He would have to “take the wheel “. I suddenly felt a calmness and a my mind cleared so I could ask reasonable questions, like how to get to the hospital in Celebration, FL. I had not been driving in FL and the traffic had been crazy so having the men from security assure me that it was an easy drive of just 4 miles helped immensely! So when I was able to find my husband in the ER I was told that he had probably experienced his first experience with A fib. Thankfully they were able to bring his heart rate down with medication and everything returned to normal–thank you, Jesus; sure couldn’t do this PD thing without you!
We just returned home last evening from our 3-week FL adventure–My it’s good to be home! And, YES! We are seeing his Cardiologist today!
(I’m sorry I got a bit long-winded.)
Esther,
Oh my gosh! What a story. Thank you for sharing. Hope the cardiologist appointment goes great!
I like your comment about NOT being a victim of Parkinsons …… why not make it YOUR victim instead of it making you the victim?
Wonderfully positive outlook – THANKS!!
Muscles as stiff as a board-
After walking and coffee is poured-
I feel much more loose-
Exercise is of much use-
Better mindset is my reward
Great blog!!
I needed that this morning