I have been thinking about how to start this blog. I know that it has been a long time since I have written a new post. I wish I had a better explanation other than I just didn’t feel like writing about Parkinson’s. I needed a break from it consuming my life. A necessary mini-mental vacation you may call it. I have received multiple messages from my loyal readers making sure that I was okay because of my blog disappearance. I wanted to thank everyone for their concerns, love, and support. But I have to be honest, I didn’t have it in me to write about how Parkinson’s is impacting my life.
I thought I was doing a good job at pretending as if everything was sunshine, fro-yo, and puppy dog kisses. Sure, I felt sad about the progression of my illness, I was moving into a different stage of my Parkinson’s. But then my parents come to visit and my Dad took me aside and wanted to know how I was “really doing”. He felt as if I was “not telling the whole truth” about my current state of mind. I was busted. I didn’t want to tell my parents that I was struggling.
The best way to explain it was that I have reached a part in my life where everything is just a little more difficult. For example, I used to have no problem styling my hair. I mean come on… have you seen my locks? My curls could rival any Disney princess. The thing is taking a shower and washing my hair takes effort now. Then, blow drying my mop with a round brush, my hands move so slowly, I start to smell burnt hair while my scalp is on fire. Gawdawful.
Timing is crucial for the success of daily tasks. I have to wait for my body and mind to be in the right place to take on certain activities. And let me tell you, that isn’t always very easy. I find myself having to accept help on the little things. Throughout my day people offer me support, such as running errands, putting on my couch cover, replanting flowers, carrying groceries from my car, moving a piece of furniture to vacuum underneath it, walking my dog Penny Lane, making a plate of food, holding onto a friendly arm when I’m moving over uneven ground, trying to install a bidet on my toilet… which I am sad to say, was not successful. You see, I can do all these things myself, it would just take me much longer and a few surprisingly salty curses.
It leaves me questioning how much I accept help because I don’t want to depend on someone else’s kindness. I see many Parkies who realize one day that they rely on their caregivers to do the majority of tasks necessary to live. With me being single, I have faith that if I really needed support my wolfpack has my back. But how much help does one need? Do I just do everything on my own because I won’t let Parkinson’s win even if everything is more difficult for me to complete? Or do I accept help because it’s easier and will take a bit of stress off my shoulders?
Sometimes it feels as if I’m slowly shrinking while this thing slowing growing is taking me over. It steals from me without even knowing I’m being robbed. I’m not depressed, but I have had a large dose of the reality of this disease. And as I know you reading this it might seem that I am not my normal perkiest self. I thought that you would appreciate the honesty of why I haven’t been blogging lately. But I’m still here and looking forward to posting more content. Parkinson’s may knock me down, but I will stand up, dust myself off, and keep moving forward. I just needed a break.
Thank you for your support. Hopefully, you can relate.
I was feeling the same way so I took a break from Parkinson’s too. I felt like I was doing everything that a good Parky was supposed to do. I was involved in my local PD community, I participated in boxing classes, and I went to support groups. I should have been thriving, but I soon realized that I was allowing myself to become Parkinson’s rather than be myself with Parkinson’s. I completely disconnected from everything Parkinson’s here locally and found a new community to be a part of that didn’t know I had Parkinson’s or anything to do with Parkinson’s. Taking a break from Parkinson’s wasn’t easy, but was the best thing I’ve done for myself. I reconnected with my local PD community again, because true friends always welcome you back with open arms and I feel better than ever mentally because now I have multiple communities that I’m part of. My break reminded me that I’m still able to be part of the world. Sure it’s not easy, but anything worth doing isnt. Glad you didn’t sink in quicksand. 😜
Allison. Thank you for sharing your life stories with me and with everyone on the web. I remember one time I emailed you because I was going through a bad depression time, as my dementia started getting worse. You sent me words of encouragement. Thank you again, and I am going to miss your wit and humor. Love to you and your family
Hello Chris,
I am not going to disappear on you. I’m still here if you need words of encouragement!
Allison, you have always been a warrior. That’s why Sharon admired and respected you so much. But even the bravest and toughest of us have difficult moments. Your ability to face these moments, and overcome them, is what makes you special. Baring your soul like you have in this blog is another example of that ability to overcome. Bravo!
You have many, many people who love and support you. There is absolutely nothing wrong with accepting their help when you need it. That doesn’t make you any less of a warrior. Keep up the fight. Love you,
Jer Bear.
Hi Jer-bear,
Thank you for your kind and encouraging words. I know that if Shar-bear was here today, she would tell me the same thing. Miss her. Miss you!
Hi Allison,
I am not far into my journey with Parkinson’s Disease, having only been diagnosed three years ago. But I can see that it is progressing, and I can certainly relate to the struggle to be honest and talk to people around me about what I am really experiencing. I can also relate to just taking a break from thinking about it! Thank you for your incredible gift to me and others with PD as you gently show us how to keep walking forward.
For me, like a few of your other commenters, Jesus Christ is my hope. He is teaching me to accept this heavy diagnosis with its daunting future. I do weep with grief and fear at times. But then He reminds me that He is with me and will provide for all that I need day by day. He has an amazing eternal future of perfect health in store for me, and He has purpose now for me even in this disease.
Last winter, I heard an amazing speaker, Katherine Wolf, who suffers from different disabilities, but is so full of joy and thankfulness because of Jesus’ powerful work of hope in her. Her speech at the Passion Conference in Atlanta in January 2023 is well-worth the time for gaining (or reminding myself) of Jesus’ whole new perspective on our situation as disabled people:
https://passionconferences.com/message/start-with-the-finish-line/
Allison, I hope you and others will have a listen and be greatly encouraged.
Hang in there!
Thanks for being honest. All of us try to keep a positive attitude, but there are times we are just plain tired. I appreciate your comments about being robbed. I am still trying to adjust to our situation. There have been a number of times recently I thought it would be fun to do something before realizing that is no longer feasible. Alas.
Hi Curt,
It just plain sucks when you realize that something is not possible anymore due to Parkinson’s. Just like when I realized I can’t ride a bike anymore. But then I look at all the things I still can do and it helps me with the fight.
YES, I have missed your witty comments.
.I never know how to respond to your posts and in this case it’s with sadness.
Whereas I am not a Parkie or even know a Parkie (other than you via), I do and have always supported you. I cannot same that I emphasize
I am sorry to hear about the decline. I have always thought of you as one of most remarkable people that I have ever met and over my somewhat charmed life, I have met many remarkable people.
All that I can say is that I have and will continue to support you in any way that I can. I have never asked you and I hope you don’t mind but in the course of my employment, I have often talked about you and your life. Few people would have survived one of the challenges that you have faced and most would have given up long ago.
Hi David,
Thank you for your comment. It makes me feel good that I still make people feel good even after all these years!
Glad to see you. Thank you! My spirit follows along!
Thank you! I am grateful you checked in. Glad to see you every once in a while. Know my spirit is with you !
Hello Marla,
I’m still here. Just needed a little vacay.
Alison, Perky Parkie is a state of mind, which includes the whole spectrum of successes and challenges we have living with PD. I enjoy reading your posts because you share all of it and are honest. We are looking forward to the next post called “Perky Parkie’s new haircut”!
Hello Kai,
Thank you for your brilliant title for my next post!
People tell me that I’m always seeing the positive. In reality, there’s too much to do for me to take time to be negative. Oh, and I am Cleopatra, Queen of Denial! The other day, as I thought about the mobility issues that I’ve developed and all of the related difficulties, I got discouraged. I wanted to just curl up into a ball and weep. But I can’t lay on my side these days due to hip pain, so I just got out of bed and moved on with my day. I am a single mom, and my youngest child has two more years of high school, so I have to keep going. I don’t have much physical support; I am my own caregiver. My parents have both passed away, my sister lives in Texas, my BFF has two adult children with autism… you see how it is. I love to make people laugh, and PD is full of those “free gift with purchase” things, including excessive sweating, urinary incontinence, choking on mixed textures… As long as I can see the humor in it, I’ll be okay. I walk with a cane, and when I meet another cane-wielding person, I sometimes say things like, “Let’s joust!” I recently joined a Parkinson’s Boxing Program, and I’m enjoying that. The coaches are incredibly supportive and encouraging. It’s near the Orange County airport, you may want to check it out! I have a GREAT nurse-practitioner at Dr Martinez’ office. And I have goals to move out of this crazy state when my daughter finishes high school. And I want to encourage the person who posted about fear of getting the DBS system. It’s incredible! I am thankful every day for it.
So, Allison, hang in there. I’m so glad that you have support. Your family sounds awesome. Everyone has blue times, just don’t stay in that valley too long. Praying for you. Hang in there!
Good to see you back on the trail after taking a well-deserved break. I’ve learned that feelings are not right or wrong, they just are, and it is good to acknowledge them, especially riding a rough trail which, you have had. The big difference between most folks and you Allison is your decision while on that rough trail to reach out to help others navigate that rough trail more successfully. The greatest joy in living is the joy in giving and from my judgement you should be among the happiest people on the planet Allison. You have given so much of your energy, knowledge, time, resources, talent, encouragement, strength, and expertise to all always altruistically. You have given freely from the heart. In this regard you have reached the pinnacle of that rough trail and it is a good time to dismount, loosen the cinch a couple of notches, take a deep breath and feel the warm sun on your face as you look on your backtrail and see what you have achieved in helping others. We all have a purpose here and a big part of that is to positively touch the lives of others while we pass on the trail of life. You have done that Allison. I know there were many times when you got home, exhausted but still willing to turn on the computer and begin your quest to reach out and offer help to those you knew needed it.
R. Harbour has found peace and security in Jesus Christ, and I too am a follower of His and find myself looking forward to experiencing what He has in store for me next as I trust in Him. I would invite those interested to explore the life of Joni Eareckson Tada, who has a powerful story to share after breaking her neck incidental to a diving accident in the Chesapeak Bay at a very early age. Her life’s story as a quadriplegic and her spiritual walk with Jesus Christ is indeed powerful.
TO: R. Harbour
Ditto
Thanks for your post. You can count me among those in your wolfpack who were concerned that we had not heard from you in a while. l appreciate your honesty in admitting that life with PD is not a walk in the park and that even Perky Parkie is not always Perky. I too have found that progression is a harsh reality and not always easy to deal with. I try to keep it at bay but the fact is there are things I could do quite easily in the past that I struggle with today. But, like you, I try to keep a positive attitude and do all that I can to slow progression. Your blog helps me do that and for that I thank you.
Hi John,
As always, thank you for your kind words.
Perky: I enjoy reading your blog, whether it is positive encouraging words or hearing how you’ve faced your challenges. I know I’m hearing from someone who truly understands the hurdles faced in a life with our “conjoined twin” named “PD.” PD is a selfish life-partner. Consistently taking the good gifts and leaving behind something broken, wrapped in ugly, soiled and torn cellophane called “Pity” (PT) or depression (DP),
But like any gift, we can refuse it. “No thanks PT/DP, I refuse to live in the refuse of depression and self-pity (your idea of a gift!). Instead, i am choosing to receive the gifts of friends who love me… the give kindness, faithfulness, mercy, gentleness, shared fun memories of the past & what we share today to make memories for the future. They remind me of what is true and life-giving. No matter what i must carry during my journey of life, i have a will & a choice in HOW & with WHOM i walk with. I also choose how I move on the journey (forwards or backwards, crawling, dancing, stumbling along, or sitting in a wheelchair propelled by a motor, or self)… i am not helpless or without a powerful will. Personally, i have chosen to
Journey thru my life with Jesus Christ and His people…and it has made all the difference. Jesus gives good gifts that PD cannot take away. He gives the broken new meaning and new life. He turns “dys-“(bad) “kinesia” (movements) into a beautiful dance. He is creating something new out of what i thought was unchangeable. I’d like you to meet my truest, most faithful friend! Jesus, the Savior, friend of the broken, my joy on my journey.
You are only human. We are only human and we have our ups and downs. PD may highlight our weaknesses, but it cannot cancel a beautiful sunset in front of the sea or the pleasure of reading one of your blogs at the end of a stressful day. I can only tell you thank you for your outstanding thoughts and carpe diem!
Hi Christian,
Happy to hear that my blog has brought you some peace in your life. Thanks for sharing!
Hi Alison, good to see to see you again.
we’re at about the place on our journies.
i’ll simply accept what I can not change….
Hello Rog,
That’s the only way to do it. Accept what you can’t change. Sometimes easier said than done.
Thank you for this honest blog. It must resonate with all of us. Everyone loses their mojo at times.
The trouble is, with PD, we are scared that the future we try to ignore/deny seems to have arrived too soon. Is this it? Will I be this feeble for the rest of my life?
It is hard to deal with anxiety at the best of times, and thinking about what we might not be able to do is soul destroying. Have goals and something nice to anticipate.
Go ahead and make plans. Call them off on the day if necessary. Friends will understand. With luck, better days will return.
I relate to the hair situation! I am thinking of getting a stand for my hairdryer, so that I can use both hands to hold the hair and hairbrush!!!
Best wishes always
Posy xxxx
Hi Posy,
You are a genius! A stand for your hairdryer! We should start a business…
Hi Alison
I hear you!!! Just exactly how I’ve been feeling – and I guess a totally natural progression as we’re impacted more in what we can and can’t do anymore! I think it’s great in theory to think we’ll just adapt and find different ways of doing things (which we undoubtedly will) but the reality is it’s a huge blow when it happens and mentally, as much as physically , takes time to adjust to. It’s exhausting being positive about PD !:(
Sending lots of love x
If misery loves company, here I am! Like you I was able to fight it for some time (6-1/2 yrs) and appear normal to the rest of the world, But the PD honeymoon was over 1-1/2 yrs ago. I am glad that MJF was finally honest with himself and the rest of the world. No, there will not be a cure in his or my lifetime. My problem is that I need more meds but my system cannot handle them. I get vertigo worse than the disease symptoms themselves. So I am applying for DBS and scared to death. But there’s a 75% chance for a positive outcome and a senior military person told me he would take those odds any day. I am most grateful for fellow PDers like you. I learn more from PDers than I do from the docs. TY
Sparky – DBS made a world of difference! I am a “rapid metabolizer” of medications, so I was taking a long acting PD drug (Rytary) but only getting a couple of hours or symptom relief. The fantastic nurse-practitioner at my neurologist sat down with me and discussed DBS. The previous neurologist had pushed really hard for me to have the surgery, but I hadn’t been ready. It had been all that he’d wanted to talk about, which had turned me completely off of it. When I switched doctors, I told them that I most definitely was not ready for DBS, and the NP put that in my chart. She let ME decide when the time was right, and my BFF came with me to the consultation appointment with the neurosurgeon. Overall, it was a really good experience. I don’t know where you live; I’m in southern California and my surgeon was Alexander Taghva, at Mission Hospital.
I know how you feel. I think we spend a lot of our time and energy trying to live our lives as well as we can and – in my case – try not to give Parkinson’s all your headspace so that it is not consuming you. But, it’s not always easy. I know when I feel like you look like you are feeling at the moment, I need to acknowledge it in my Blog and not pretend that all is fine if it is not! It takes courage to admit that not all is sunshine and roses in the garden.
There are definitely times where you just can’t summon up the energy to be ‘Perky’. The best thing is to acknowledge it and let our readers/followers know that while we try to be positive, it is still difficult.
As for not posting for a while. I was brought up by my parents saying ‘If you don’t have anything good to say, don’t say anything!’ They might have used it in slightly different context, but it fits doesn’t it!
Oh Allison, I don’t know what to say except that I think you are courageous, bold, insiteful and resilient and I expect you will pass through this phase any day now and be all the wiser for it. Sorry cuz I know this isn’t an enjoyable spot to be in… It just seems to be as necessary a part of life as the good times. Dang it all.
Hi Eugenie,
Thank you for the words of encouragement. It’s all apart of living the life were given.
Ever hear the expression, honesty is the best policy? When you hide your problems you don’t allow friends to show their love and support. Why would you avoid that warm feeling? From my generation… let the sunshine in!
Awww, thanks Dad!
Hi Perk, you don’t mind if I call you perk do you? Perk like percolator, like coffee pot, like wake up and smell the coffee as my old friend Ann landers used to say. You didn’t think that crappie happy was going to take you to the end zone, did you.? Sometimes you have an absolute right to to just be pissed off. Ain’t nothing wrong with that. As long as you’re not hurting the ones you love.
Now take MichaelJ Fox. I really loved his movies. Liked his foundation too. But then somebody whispers something into those tiny little ears of his and we don’t count anymore. The money is in prevention, early identification, genetics.
And what about the rest of us? After all that’s not what we donated for, is it?.
I can see Michael is turning a big corner and probably is thinking more about his legacy than a cure. I just hope when they finish with that big whatever with his name on it they leave space for the names of the people who died along the way.
Now that might seem a bit angry but I have said my peace and am done with it. Try it sometime the hardest part is the letting go.
Hello John,
You’ve touched on some important issues, but you’re right, the hardest part is letting go. Thanks for your comment!
Allison,
We are all pretty good at pretending. I watch my husband struggle more each day, but I pretend not to see. I will never fully understand how all of you feel, but please know those close to you really do care. Don’t give up the fight. Use every ounce of your strength to keep going. We care and we want you here.
Paula,
Thank you for your kind words!
That is so beautiful. Xxx
Oh Allison, I could tell that you weren’t quite your Perky self last week, but that is just fine by me. Reading your blog tonight made me think of the 60 MInutes segment last Sunday on the advances made in Bioengineering to enable quadriplegics to not only move their hands or feet but to actually FEEL them. I was moved as one man spoke about his newly re-found ability to really hold his wife’s hand again and FEEL it… finger by finger – it was awesome. Not sure why that came to mind, except the hope that there will be scientific advances in PD that may help us all as well. I know you are a very resilient gal and you are honest about what is hurting you now. That is enough for me and I thank you for sharing that part of yourself.
Thank you, Eugenie!
Yep, Parkinson’s sucks, plain and simple… One morning, after a long and pitiful, “why me, ” party the nite before, I also had to be honest. I made a brave assessment of what I could and couldn’t still do – surprisingly enough, the list of things I was grateful to be doing, was almost 4 to 1, what I had lost.
When I was a kid, I labored for a cemetery, doing anything and everything: hand digging graves, mowing, setting head stones etc. then I had a rational thought, Why would I seek employment for a company, that I will someday, inevitably find myself retired there. I didn’t want to participate in anything footnoted for Parkinson’s, no Boxing, stretching, dance; I mean, why would I wish to see other disabled bodies, let alone hang out with them? No, for me I would meet the schoolyard bully myself, and in doing so, I found the warrior I hadn’t seen before…
Hi William,
What an interesting life you’ve lived! Thank you for sharing!
Now, I’m not suggesting a person should become as “Simon and Garfunkel” would write, about life as an island, hardened as a rock by past misfortunes; but where you spend your time, their you become…
I became a published author, during my physical ailments, and do my therapy work, through the antics of various animals in children’s books. Writing for me has become my ministry, and since people are dealing with worse atrocities, it feels great to reach out to them. What would life be like, living with Parkinson’s in a third world country; devoid of specialists, medications, and all the while wondering where your next meal may be coming from?
When you get yourself bummed out, think about the blessing you still retain.
Hello Wm,
I have often thought about what it would be like to have Parkinson’s in different places in the world. I definitely wouldn’t have the resources that are available to me now. Thank you for reminding me of my blessings!
Thank you, Allison, for your honesty in showing us you are human. Appreciate you for it. Do what you need for you! Sending a big hug.
Hi Nancy,
Thank you for such a sweet comment! Hope everything is going ok with Joe!
nice to see you back.
I think we are all on parallel tracks, different landscapes, but similar destinations. I was carefully doling out my supply of denial, and keeping up my internal inventory of small changes when I noticed that I was starting to lose my balance, with attendant breaks and damage to these ageing bones. It wasn’t the osteoporosis that set me off – I know I’m getting older, What affected my mood, was the reference to loss of balance as a common, if not universal symptom of mid to late state Parkinson’s. Whoah! late stage? All of a sudden, and for the first time I could clearly hear my clock ticking. I gather you are listening to yours.
So instead of listening, maybe we can find a way to dance to it. Good luck to us all.
js
Hello JS,
I like to think of dancing our way out of the challenges that Parkinson’s brings. Thank you for sharing!
Keep up your wonderful work when you can. I love your blog ! I am a caregiver for my husband with Parkinson’s. Some days are not easy but you have brought so many smiles to us. We have a small dog, a 13 year old toy rat terrier who is a constant joy and we love seeing and hearing about your dogs too! I have passed your blog info to many others in our Rock Steady Boxing classes. Best of luck to you and thank you!
Hello Rhonda,
Oh! Give your dog a kiss for me! Thank you for sharing my blog. It’s brightens my day to know that people are enjoying it!
that was a beautiful blog story. it’s beautifully written and articulately spoken. I have been feeling the same way but I’ve never taken the time to stop and verbalize it. I found it very encouraging.
Hello Twylla,
Happy to know that my blog has helped… even just a little bit!
i really enjoy your blog and I missed you, but the reason I love your blog is that you are authentic and not writing it is authentic, too. Take good care of yourself and be grateful for what you can do and come back when you feel like it. We are stronger together. Peace.
Hi Laura,
Peace be to you!
I can absolutely relate. First and foremost, take whatever you need to prioritise yourself. Yes, we your readers miss you but we also want you to put yourself first. Whatever else you have time, energy and inclination for sharing is great but numero uno is you, sweet girl.
Sending you my very warmest wishes, 🤗🤗🤗🤗
Rebecca
Hi Rebecca,
Thank you for reminding me that I need to put myself first. People will understand!
Can totally relate 😞 you have summed up my daily battle perfectly. Young Onset and the realities of natural ageing are really starting to kick my butt these days (my symptoms started in my 20s, diagnosed in my 30s, have fought it all the way in my 40s, now 50 and my future scares the bejeezers out of me).
Hello Jennifer,
Symptoms in your 20’s diagnosed in your 30’s? You were way younger than me! And here I thought I was alone! Ha!
We.re glad to hear from you but so sorry about the Parkinson’s getting you down. Unfortunately it had to happen someday; it’s amazing that you have handled it as well as you have for so long. I think of you often and still miss your exercise class. Ken can’t walk more than a few feet unassisted any longer and his Lewy Body dementia makes it difficult to communicate so he wouldn’t be able to attend anyway, but I might still go!. After he fell and pulled me down with him a few times, I got a caregiver to come in every day. I know it’s not the same as your situation but I sure didn’t hesitate to get help! And Ken seems to appreciate it, too. We understand completely if you don’t get back to being as perky, but we sure are hoping you do!
Hello Janet and Ken,
I’m sorry to hear about Ken’s challenges, but I am happy to know that you have help! Miss you two!
This is the best statement I’ve ever gotten on the reality of Parkinson’s (8 years in). It is exactly how I feel and I haven’t really shared it with anyone. I’m on a very intense exercise schedule and have adjusted my meds to be more effective. It’s gone pretty well, but not as good as I am, hoping for. I console myself by thinking the symptoms would be a lot worse if I wasn’t doing the exercises. I can fake it and come across almost entirely normal when I need to. No one knows how much I dread standing up and walking across the room. I also realize that I’m actually waiting for a cure and I want it soon, so I can be PD free in my lifetime. Anyway, your non-perky posting tonight was the best thing I could’ve heard. Thank you…
Hi Chris,
Keep up the good work, even if it doesn’t feel your personal best! Happy to hear that you found something useful out of my lack of perky post!
Thanks for being honest Perkie.
Anytime Royall!
Thank you for your honesty, Alison. It is validating to know that it is OK to feel down sometimes and be honest about it. I’ve passed the point where styling my hair is difficult, so I cut it short, and I feel liberated! I’ve had really bad days, and they have been followed by really good days, unexpectedly! Your honesty makes me like an admire you even more. Thank you for sharing!
Hello Melanie,
Thank you for your kind words!
Oh how I can relate. I just had DBS surgery and I am realizing how much more I am depending on others, especially my wife (and caregiver).
I wish you the best in all of life.
Same to you Bill!