With Parkinson’s, Slow Is the New Fast
(Courtesy of Jean Mellano)
There is no way I have Parkinson’s Disease (PD).
That river in Egypt (‘Da Nile’)
I will never forget the day I heard the words no one ever wants to hear: “You have an incurable, progressive disease.” Although I had two good friends with PD, I never thought we would have something like this in common.
In 2015, at my annual check-up, my primary care physician suggested I see a neurologist after I told her my handwriting was becoming illegible. Little did I know, this would mark the beginning of my PD journey. The first neurologist I saw told me I had PD but suggested I see a movement disorder specialist to confirm the diagnosis. Determined to prove him wrong, I made the appointment. After conducting the standard tests (which I felt were too subjective), she agreed with the first doctor’s diagnosis.
Still convinced that I did not have this disease, I sought out other medical opinions. After all, I ate well, exercised, and always got plenty of sleep — I did all the “right” things. How could I possibly be sick? Still in denial, I saw three other neurologists — all confirmed the PD diagnosis. One doctor prescribed a PET/CT scan of the brain, which offered further clinical proof of PD.
Medications … NOT!
Of course, the consensus of all the neurologists was that I should start taking prescription medication. Initially, I refused to follow their advice. I believed I could ease my symptoms through holistic measures, diet, physical and occupational therapy, and exercise.
I clearly remember what my life partner, Steve (lost to suicide), had dealt with while trying to find the right medications for his depression. There were numerous side effects and the multiple concurrent, prescribed treatments: “This drug doesn’t work, so add this drug to enhance the functioning of the first medication.” If there was still no improvement in symptoms, medication dosage would increase. Then there was the medication’s loss of efficacy over time. It could also take weeks or months to know if the drug was going to help. Even further alarming was that some of the side effects (suicide in the case of some antidepressants) were what the medication was trying to alleviate.
From what I read about PD medications, it seemed like I would experience a very similar situation to what Steve went through.
Am I depressed, or do I have PD?
Although I refused to take medications to alleviate my symptoms, I still continued my exercise routine (walking, yoga, weights, cycling). However, I was on high alert for changes in my body.
Other strange things were happening to me that I could not explain. While volunteering at a race, I was rolling posters for athlete giveaways. I could not understand why the other staff could roll five posters to my one. Why was I so slow at performing such a simple task? Rolling around in bed at night became a chore, and I felt I needed a forklift to change positions! My left foot kept falling out of my slip-on shoes. I had trouble keeping the shoe on, especially when going upstairs. Fatigue and lack of motivation plagued me.
Could these symptoms be attributed to situational depression that resulted from Steve’s suicide, or was it PD? Should I consider medications for depression or PD?
A blessing and a curse
Having been an athlete most of my life — tennis player, weight trainer, roller-skater, race walker, dancer, and cyclist — I was very much in tune with my body and in touch with its capabilities. This has been both a blessing and a curse. The discipline to work out, along with the muscle memory I have built over the years, is serving me well in fighting PD. However, I am also very aware of how much ability I have lost. Before PD, my balance was excellent. Now it is probably closer to what someone my age has now. However, my frustration level is so high since I still expect to be able to accomplish what once came so naturally to me.
Where I was once strong, fluid, and graceful, I now feel weak, inflexible, rigid, and non-rhythmic. Most people who look at me see no signs of PD. However, I know what I have lost, and for me, that loss is huge.
Although I sometimes wish I had never been an athlete (you don’t know what you’ve got until its gone), I do accept that my years of training and athletics will be my saving grace in fighting this disease.
(Photos courtesy of Jean Mellano)
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Anne McIsaac
You put the exact words to how I feel! Being extra fit before the diagnosis doesn't make the loss easier to swallow. We still look fitter than average people our age which makes communications with health practitioners awkward.
So true Anne...I dont think my neurologists know what to do with me sometimes...
Karen Bate
Jean, I didn't take any meds for 3 yrs. and used exercise for m After my left foot started to drag I thought it was time to start meds. Started with Mirapex - no improvement. Then took 2 carbidopa levodopa 25/100 pills once a day which did stop the drag. I would delay carbidopa/levodopa as long as possible. It works for 3-5 yrs.. Three years later when I started to take it 3X per day I started to get dyskinesia - involuntary movements in my neck and head. Count yourself lucky if you have the type of PD that does not have tremors.
Hi Karen,thank you for sharing your history... I too have avoided Sinement for as long as I thought I could. Over the next few months, my column will focus on the experiences of my PD journey, culminating in what I think has helped me the most. yes, I am very thankful I do not have tremors, most of my symptoms are the non motor issues..
Ken MacKenzie
Hey Jean, thanks for putting into words what has been going through my mind lately. As a recently "retired" Elementary PE teacher i have a very high expectation of what my body can or could do. Loosing these abilities little by little feels like parts of me are going away. I am on a large amount of drugs but as my kids say it is my Jam and allows me to function quite well. I have recently started to work out at the gym with my daughter and i am amazed at how much this simple act of fighting back and getting stronger has bouyed my life. I have many extreme hobbies that allow me to feel alive, such as white water kayaking, mountain biking, hiking, fly fishing etc. I believe that when we stop fighting the PD monster grows and can overwhelm you. Keep Fighting. Ken
Hi Ken, I so relate to what you are saying.... over the next few months, my column will focus on the continuance of my PD journey, culminating in what I think has helped me the most. If you have Rock Steady Boxing near you, I highly recommend it.. https://rocksteadyboxing.org/
Brooks
Hi Ken A fellow fly fisherman. I can still throw a tight loop ;-) but cant walk in a stream - even with cleats. I went in several times last summer - and could NOT understand what the deal was. So - spent mote time in a drift boat. Not much better - I continued to do the Whoa, Whoa WHOA thing. I'm not sure if I went in with waders on - I'd be able to manage. I'll die before I stop fishing - but am going to need to engineer some kind of "fix".
Are you falling? Thoughts??
Again - still quite new here.
Blessing to all of you
Will
Thanks for a very interesting article, Jean. I particularly liked the "fork lift needed to turn over in bed" :
Cheers, Bill.
Thank you so much Bill for taking the time to read my story. I am still looking for that forklift that I can park in my bedroom LOL.
Lisa
I have a strong suspicion my husband has PD. He was diagnosed with lumbar spinal stenosis so we kinda figured his symptoms were from that.. right foot dragging. Short stepping.. heaviness and sometimes weakness in limbs...but exercise and concentration helped the walking. Started taking amantadine and movement improved.. another reason to believe it is PD in addition to stenosis. Very scared cuz hubby is really awful at the idea of any illness.. he is a bit vain and very attractive. Always needed that feeling of being attractive to feel motivated and happy. Luckily no major tremors. Slight shake occasionally but usually when doing something or nervous, not at rest. So again had a reason to dismiss PD. Don’t know where to turn. If I say the words to him it will be a nightmare. Yes maybe I am a coward. But I love him very much and am afraid of what a PD diagnosis will do. But also afraid of not acting now if there is a benefit to early diagnosis. He is only 53
Lisa, you are not a coward. You are doing the best you can. Your husband must come to terms on his own with whatever his diagnosis may be. I consulted with 8 neurologists before I finally accepted I have PD. I believe slowing disease progression and providing symptom relief (and many doctors agree) is best achieved by exercise and movement. If he is capable, perhaps you could enjoy taking daily walks with your husband. I am not sure about benefits to early diagnosis. There are many schools of thought on that.
Lisa
Thanks so much Jean for your comments. Hubby went to physical therapy and now does exercises on his own as well as going to the gym. And we walk the dog every day. He is much better physically and mentally when exercising. Still there are times he is very stiff and feels a lack of dexterity. That’s when he gets anxiety that he may have PD. Still has not seen a neurologist. I am hoping that will be our next step. I pray your situation is manageable and you have a good support system. You seem very kind!
hi Lisa, I am glad your husband is exercising. I have found massage helps with my stiffness and yoga, meditation and CBD oil have helped with my anxiety. It is hard sometimes to discern if my symptoms are due to natural aging or PD or both. If you do get to a neuro, try to do as much research as you can on PD so you can be prepared to ask questions of the neuro. I have found that some neuros just prescribe medications and send you on your way.
francisco manuel goncalves
Diagnosticado há 7 anos.Sou aposentado, trabalhei na banca.Gosto da agricultura.Julgo que ajuda.O meu braço esquerdo é o único membro que treme.Também tenho problemas de olfato,Disfunção erectil,escrita,visão.sono. Medicação,levodopa+benserazida 200mg+50mg,ropinirol 8mg. Actualmente o meu grande problema é o Dormir.Não consigo dormir 3 horas seguidas.Aceitei o Parkinsson, como qualquer outra doença.Ignorancia? Não sei.Sei que passados estes 7 anos, vivo sózinho(esposa abandonou a casa 7 dias após o diagnostico), cozinho,passo a ferro,limpo a casa, tomo banho sem ajuda, conduzo e cultivo desde castanhas a macãs, feijão etc.Tenho dificuldades? è lógico que sim,Mas penso que não me deixo ir abaixo com facilidade.Vou pela primeira vez para uma instancia termal 15 dias.Será util?Alguem já experimentou?Obrigado.
hi francisco, i used google translate on your comment. it sounds like you are doing everything right, acceptance, staying active. i dont understand what 'uma instancia termal' is
Brooks
Hi Gang.
Reaching out here. I am new to this.
I too was an accomplished athlete. A lot of "balance" things - NCAA tennis, skiing, mountain bilking ...bla, bla, bla. Most important to me was my racing. (avocation) I raced sports cars professionally. Before I was diagnosed, I found that I was having problems staying in a lane for example. Previously, I could look away - look back - and still be square in my lane on the freeway. Then - depth perception. Just could not wrap my mind around what could be wrong. Then - of course - the tripping and running into door jams were next. Stairs were sure fun. Then the diagnosis.
Cutting to the chase here - did anyone find that their driving was/is a challenge? I've had my license suspended cuz the doc's here in Cal are required by law to report to the state.(probably a good thing) Being relegated by law out of an automobile was a dose of reality. Do any of you still drive?
Again - this is all so new - I'm kinda dazed.
Thank for your feedback. Grateful.
Hi, I am always dazed and confused with this disease lol. I was diagnosed in 2015 and still drive. I am so thankful for that . It is a blessing since where I live (north fork of Long Island,ny), mass transit is virtually non existent.
Brooks
Hi Ken A fellow fly fisherman. I can still throw a tight loop ;-) but cant walk in a stream - even with cleats. I went in several times last summer - and could NOT understand what the deal was. So - spent mote time in a drift boat. Not much better - I continued to do the Whoa, Whoa WHOA thing. I'm not sure if I went in with waders on - I'd be able to manage. I'll die before I stop fishing - but am going to need to engineer some kind of "fix".
Are you falling? Thoughts??
Again - still quite new here.
Blessing to all of you
Rick
Hi Everyone, I’m 64 and I been diagnosed with Parkinson’s disease 2 years ago . Ive always been fit and love exercise to the extreme! Cycling , running, swimming, yoga, weights , sailing , Waterskiing, snow Skiing . My wife and I lived on our yacht for 7 years and sailed from NZ to Australia thru the pacific . I was doing s a 120k cycling ride Raising money for charity in 33c ( hot) climbing a lot of hills ,that day I got massive cramp half way thru then I noticed my left arm started to shake, that’s when it all started . I take medical Marijuana which helps me to sleep. I’m not depressed or suffer from anxiety I’m a very positive person and feel very blessed with the life I have . I’m Not on Parkinson’s medication yet trying to avoid it . Has anyone read John Peppers testimonial on YouTube he saying he’s reversed most of his Parkinson’s disease , interesting Article ! Power walking with light weights Help tremendously. God Bless Rick ???
hi Rick thanks for your post. It seems like you are enjoying life to the fullest! good for you. If you are looking to connect with others who have PD, you may want to start a topic in one of our forums: http://parkinsonsnewstoday.com/forums/