To My Family,
Now that I have officially been diagnosed for 5 years, I am coming to the disheartening reality that my Parkinson’s disease is progressing. I can see the deterioration in my physical health and the medications that I have used to keep symptoms under control are now becoming unpredictable. I find myself unsure what each day will bring. I know that you only want to support and love me, but you might not know exactly how to help. So I have written you a letter to give you some helpful hints as we travel this bumpy, dusty Parkie road together.
Mom, you know that I say I got Parkinson’s because you didn’t buy me all the Coach Handbags I wanted in high school (although there’s never been formal research to support my theory, it could be true). But the reality is there’s nothing that you could have done to prevent me from getting sick. In fact, I know that if it were possible to take away my pain and struggles, you would be first in line to take on this burden.
Dad, can only imagine the agony you have experienced watching your only daughter struggle with declining health. When every time the phone rings, you wonder if it’s me calling to say that I am having a rough day, or worse, that I am in the hospital again. But the one of the many gifts that Parkinson’s has given me, is the deep understanding at a young age, just how important family is. Thank you for always being my cheerleader and right by my side when things get dark. In know that you will be ready to zip over to California at the drop of a hat, with the Daddy ambulance and insulated, vacuumed-sealed Frozen Yogurt canister in hand.
To my brother, I know that as children we used to fight like cats and dogs, or how I like to think of it, Yetis and Chupacabras… just sounds more exciting. But as we get older, I realize that I have never said how proud I am of you. Up against your own health issues, you finished Optometry school, opened your own practice, married an amazing woman and had 2 beautiful children. I have to say, I’m a little jealous. And although I am scared for the future, I know that I will always have my family to fall back on if needed… assuming that I provide child-care for my niece and nephew.
Now let’s get into the list of helpful hints that you, my family, might find useful:
Perky Parkie’s Pieces of Advice:
-No, I am not being lazy when I fall asleep or need a nap in the afternoon. I fight fatigue everyday, which prevents me from having the energy that I once had.
-I may not show as much emotion as you have become used to, that doesn’t mean that I am not having fun, or that I am not happy.
-Everyday my mood could be different. I might be snippy, or I might be goofy. I don’t mean to be so emotional. It’s just me fighting an internal battle with the loss of the person who I used to be and I don’t mean to take it out on you.
-Even though I may not express it, I love you and appreciate everything that you do for me.
-Regardless of how many times you deny it, sometimes I feel like a burden.
-Push me to exercise everyday… even if I say I don’t want to. I may have apathy and will think of every excuse not to go to that Yoga class I used to love. Don’t let me sit on the couch doing nothing. Movement is life.
-If I seem unable to make a decision about what to eat for dinner, what movie I want to see, or what candy I want to shove down my face… limit my choices. Trust me, it’s way easier with 3 types of food compared to “What do you want for dinner?”.
-I know that I can move slow, but be patient with me. I have learned to accept that many of my vacations will be spent looking at your backside as you stay 2 hops in front of me.
-When you try to make plans or appointments and I don’t sound excited about the event, don’t take it personal. I don’t know how I will be feeling when it’s time to go to lunch, so making a set schedule can be challenging. I don’t want to commit to something and not be able to keep my promise.
-Don’t imply that I am making a bigger deal out of my Parkinson’s disease than necessary. Would you tell someone who has lost their arm in a violent shark attack that it’s not as bad as they say? You aren’t experiencing my pain and while sometimes my Parkinson’s can’t be seen from the outside…I can feel like I am losing my mind on the inside.
– Don’t question my Fro Yo addiction. The inability of practicing self-control can become an issue with Parkinson’s and let’s just say… they’re way worse addictions!
-Sometimes I like to have conversations that have nothing to do with Parkinson’s or the fact that it controls many aspects of my life.
-Just because I buy cool gifts for my family, like Marshmallow Launchers, or Nerf Footballs… it’s not necessary to shoot them at my head, a simple “Thank you” will suffice.
-Don’t let me become a recluse. Sometimes when I am feeling bad, it seems that being alone is better, but I need my PD Wolfpack to keep me strong.
-I am sorry if I run late, sometimes I’m feeling good, but when I get ready to leave the house, I realize that I am moving at a snail’s pace.
I am hoping that this letter has offered some clarity into my wacky and confusing world, but more importantly I hope that you know how much your love and support means to me. Without it, I wouldn’t be able to face these challenges with a smile on my face. Thank you.
I enjoy reading your post and blog,thhink start new blog write and share my story on 20 yrs of parkison only 58 now.Had new sugery done write my story on using pump new surgery people with parkison.
Hi Allison! This is Tony G, we met at Ron and and Jen’s house in Boulder a few years back. Your attitude is phenomenal, and your willingness to share with others is a true gift from above. You have helped many with your infectious enthusiasm, including me (and my daughter, Lis, who does not have PD but as you know she works for the DPF).
I have been diagnosed for 8 years now. I ,too have noticed that despite my best efforts I simply must allow the disease to exist within me and work within its constraints, rather than fight it all the time. Like you say, an invitation to do something on a specific date and time is so difficult. It is not that we don’t want to do things and plan in advance. We are as frustrated at not being able to give a definitive ‘yes’ as the non-PwP who extends the invitation but sometimes goes exasperated with our inability to commit.
You still win the award for best quip regarding DBS! As we were comparing DBS experiences and scars, I noticed that you had bilateral DBS, as did I, but I only had one IPG and a very prominent placement just below my clavicle, whereas you had separate IPGs for each side, and no infraclavicular placement was notable on my quick glance (hey, I’m a doctor, I get paid to notice such things!). When I asked you about where you IPGs were hidden, your response was hilarious….”hey, I’m from Southern California. We can turn almost any procedure into a breast augmentation!” I’m still chuckling about that. 🙂
Your positive attitude seems to benefit from the tremendous family support you enjoy. My daughters have been wonderful, and their love keeps me going. By far the single most important factor in my emotional survival this year has been meeting an understanding life-partner, who looks past the mask of PD and sees me for me. Life Partner, not Care Giver. As a recently-divorced person after 30 years of marriage, my self-esteem was non-existent as I entered the tumultuous on-line used husband market, devoid of my beloved dopamine. After a couple of early rejections based on my PD, I had the good fortune to meet a very optomistic, ebullient, caring person who refused to let my PD get in the way of knowing me. Her name is Sue, and she has given me the gift of love without restraint or condition. I am so thankful for her. This disease is difficult enough without having to face it alone.
Hope to run into you again soon! Tony
Hi Tony! Of course I remember you!! It’s awesome to hear from you! Are you going to the World Parkinson’s Congress in Porridge in September? I would love to catch up!
You are so lucky to have Sue! I’m hoping one day to have someone in my life that can see past the disease. You two give me hope!
Thank you for your comment. It made my day!
Hi Allison! This is Wendy. I was on the Exercise/DVD with you, 5 yrs ago now? I haven’t seen you since that time as we live in different states. I always remember your positive attitude especially getting PD as such an early age and then having DBS surgery. All of us who struggle with PD try to do our best and I know you are doing that. All of us know what we need to do to stay well. You are positive, you’ve kept moving even when you didn’t feel like it but lets face it Fatigue is such a pain in the butt. Just when you think you’re having a good day it shuts down and fatigue is one of my worst symptoms and the hardest to explain. It is so unpredictable. You also mentioned all the stuff happening on the inside that no one see’s and I totally understant that. I want to stay active and be with family and friends and go out and have fun yet when the time comes you simply can’t! So frustrating! You can be so grateful for family who care about you because with my experience they are the ones who really care about your well being. You helped put words to all that I struggle to explain. Thanks for being so honest. Would love to see you again. I’m in San Francisco at the moment but that still doesn’t put us very close. If you’re ever in Boulder CO, please give me a call. would love to see you!!! Wendy
Hi Wendy!! So nice to hear from you! Are you going to the WPC in Portland this September? I would love to catch up!
would you mind sending me more information about WPC in Portland? I may be able to convince a few friends to come along as well!! Good to hear from you! Wendy
Check out the website http://www.wpc2016.org/ You can register and get all the info about the speakers.. Such as myself! Hope to see you there!
Dear disease colleague. Thank you for your courage to post this letter which describes our daily fight very well. I feel like you very often, but I’m in another situation – or surrounding. I am having symptoms for 14 years now. I have always tried to remain the same person as I had been before the illness, but in the meantime it becomes more and more difficult, I care for my 84-years-old mother who has been upset (dement?) now for a long time. Every day I do the household – also for my 28-year-old daughter who works the whole day. My mother has lost any empathy regarding my Parkinson’s because of her illness. My daughter would like to help me more, but she is almost always busy and has her own problems. I wouldn’t be happy, if I caused her additional trouble. And my friend cannot understand, why I can’t come to his house more often, although I supported him with his little children in former times and for a long time. This all doesn’t make me feel better with my disease, but now I try to care for myself. I quitted the relationship with my friend after a nine-year-love (because of other reasons, too) and I am looking for a place in a senior house for my mother. I have not lost my humour and my emotional strength and I don’t want to lose it either. Being creative and having the mentality to laugh about myself keeps my mind strong (I hope so. :). I understand that you are very happy about the love and help from your family. Blessings to you and your family also from me (Sabine)
Sabine, it sounds like after 14 years with PD, you have learned to manage your stress and take care of yourself. I am happy to hear that you have not lost your humor or your emotional strength. I wish you all the best in your life’s endeavors. Thank you for your message.
Allison , you nailed this in so many ways but the note to dad broke me Into tears. My dad is my hero and I can only imagine the pain he feeels watching me struggle
Thank you for putting my thoughts into words
your heartfelt words remind me how important it is to communicate with those close to me about where we are with this complex chronic condition called Parkinson’s Disease. If we don’t talk about it and neglect asking for help we wouldn’t get the support we need and be very isolated. That;s why we should share … good on ya!
Sometimes asking for help us the hardest part. Thank you for your comment.
Thank you Allison, for sharing this very personal and touching blog.
Mariette (The Netherlands, http://www.marietterobijn.com)
this Blog is a big hit…sounds like we all need someone to articulate how we feel and you shared honestly. We all can relate…. submit this one to all the web sites on PD. You will help many to know we a species of our own!
Its the best way to share with those you love by reading someone else’s story. Some how its more believable than our own.
You are a “Pea in a very big Pod” (from the saying, “Two Peas in a Pod”)
From one Pea to another, thank you, and a big “Pea” Hug…… Bonnie
In this posting, I detect a little less perky and a bit more parkie than I have in previous posts. This is hardly surprising considering the toll PD has on the emotional state of those living with PD. Some days it can be tough to be perky. Still, I hope you’re able to continue being PERKY parkie as your positive attitude in the face of this disease is an inspiration to many who follow your blog.
Here’s something I would add to your list: “Please don’t assume that all parkies are the same. While we may be challenged by the same disease, we are challenged in different ways. We often have different symptoms and are affected in different ways by the symptoms we share. This is why PD is sometimes referred to as a boutique disease and why it is so difficult to treat.”
I will always be Perky, just felt like being honest about my current state would be the best. You’re so right that we are little snowflakes, we all have our own version of PD. Thank you for your comment.
Allison: I have been walking beside my husband, who has had PD for 16-years. He was diagnosed at age 51. Reading your posts brings everything into perspective for the person with PD. Caregivers have totally different issues to deal with in regards to PD. I admire your grit and the ability to laugh at yourself. My mantra is, “We may not have it together, but together we have it all”! My husband and I have been doing it together for 41-years of marriage!
Love your mantra!! You two are lucky to have each other. Thank you for your comment.
I just want to thank you for sharing your feelings in your writing. I’m 45 and was diagnosed last June. Reading your posts makes me feel like I’m not alone. The way you articulate what it’s like to have PD is great. Some people just don’t understand what goes on in our minds and bodies throughout the day. Unfortunately I am still stuck in the very angry stage of this journey,but my life is a work in progress. Once again thank you for what you do.
Sometimes it can be very scary to share your inner thoughts, but I believe in the power of sharing your story. Happy to hear it helped. You are not alone.
Allison you hit the nail on the head. It has been 5 years since I was diagnosed and 4 years since DBS. Family and friends don’t understand what its like having PD. It’s a disease that strikes internally. I mentioned to you at exercise class that I came back because I also was starting to experience movement problems. I decided too that I have to accept it is going to be different and take longer to do things. But I wasn’t going to let PD stop me and will continue to fight this disease.
Kudos to you for never giving up but understanding that you can still do many things that you used to do, just maybe a little slower.
I am commemorating 10 years of life with diagnosed with PD this month. Funny thing is I always felt I would conquer this disease — now I feel like I am beginning to lose the battle. You are so right about the movement and need to exercise. Thank you for the reminder. I am going to take will take the pile of clothes off the airdyne bike and face the Parkinon’s monster head on.
Stay strong, and keep moving! 10 years is quite an accomplishment. Thank you for the comment.
Thank you so much ! I don’t have Parkinson’s but my hubby does and this gives me so much insight into his day . I know he tells me these things but to hear someone else say the same things really brings it home . The thing that really hit home was when you mentioned the loss of the person you used to be. That is the saddest thing for me … Seeing my sweetheart lose so much emotion …
What a great post! I have had PD for 6 years and feel exactly like you! My medication isn’t working as well and I’m going to try a new one. My brother also has PD. I shared this with my family and friends. Thanks for writing it! One thing that is so important is exercise! I’m glad I like to do that. Keep your positive attitude! Carpe diem!
Mary, you are spot on about exercise! My friend with PD exercises daily, takes a PD ballet class, piano lessons, anything to keep the motor running! He’s doing extremely well and has the best attitude…Blessings to everyone on this journey…research is very hopeful…
I know how you feel as we feel the same way – I am progressing faster and faster and no meds seems to help much. I freeze more and more and fall more but i will keep going and going until I can’t. I am 73 and diagnosed around 3 yrs ago, live with one of my daughters. She has a lot of stress in her life and doesn’t need mine. I have another daughter also that has some health problems.My son and his family are far, far away. Love them all so much and thank them so much for helping me. Just want to stay positive.
This is so well written but it makes me sad. I hope you have many many good days in the future.
Tomorrow is a new day !
Do not get mad get even
Come on Ally! We can beat this!!
You have been an inspiration for many,
Mark
I don’t know what you are writing about. Sounds like a description of our days. That’s why we have fun together and I look forward to many, many more fun days with you. Remember my motto: Why be normal? Love, the dad.
Thanks for sharing. Solidarity forever. Four years since diagnosis, I see slow progression of PD. But I took a lovely walk with my friend yesterday and had a great martini before dinner. It’s all real. Including peeing every few hours at night. 🙁 Garrett
Your spirit is admirable and undeniable, and your writing talent is superb. No matter how hard they try no one can understand how you feel except for another person with PD. My biggest frustration is that sometimes I have symptoms and sometimes I don’t. That may give the impression that I can control the symptoms. Reader’s Digest had a column called laughter is the best medicine. that is not true.
prednisone is the best medicine .laughter comes in the second place but think about it ,laughter is contagious so that where else can one dose of the medicine help multiple people
Keep writing it is cathartic and you do it so well
Be water my friend , and … Resist ! With other medications you’ll find the groove again , and sooner or later the great effort in investigation would bring a solution … Day by day my friend ! And move on ! Daily exercise ! Concentrate in the things that you can do , and don’t desperate with things you cannot do … And keep joking about everything , life is very funny if you look it close enough. Love and Strength !
HI ALLISON! YOU’VE GOT DBS, RIGHT? I’VE HAD PD FOR 23 YEARS — DBS FOR 13. WHEN I GET WEAK OR FEEL I’M DETERIORATING, IT IS USUALLY SOLVED WITH PROGRAMMING. DON’T BE DOWN, ALLY. CUTE MESSAGE THO!
You are going through exactly what I am going through right now. Every time I walk by a mirror I am puzzled by the reflection I see. I see a frozen face And a stiff hunched over body…which reminds me That my disease is progressing. I read some poetry by a lady with Parkinson’s…and it hit home….m
Stay strong and keep praying.
I’d like to add “don’t ask me why I am so weak…I don’t know the biology behind the 275 symptoms but I do know that opening that canister, or popping the top off my hairspray, or even opening a jar is very slow and tedious, and often impossible”
So true!
You are going through exactly what I am going through right now. Every time I walk by a mirror I am puzzled by the reflection I see. I see a frozen face And a stiff hunched over body…which reminds me That my disease is progressing. I read some poetry by a lady with Parkinson’s…and it hit home….
Stay strong and keep praying.
I’m so sorry for what you’re going through…I love that you have such a wonderful sense of humor…laughter is the best! Blessings to you and your family…