Hello everyone. My name is Eric Slominski. I'm new to this site and new to this life of living with PD. I wanted to write a little about my story as I think it will be therapeutic for me. Maybe someone else will read this and feel less bad about their own plight. I know reading others stories on this site has been helpful for me.
I'm 38 years old, just diagnosed couple of months ago. I am married with two young kids aged 9 and 7. I have always been very athletic and very active. I participated in soccer, track, football, wrestling, and basketball in high school and ran track and mountain biked in college. However in my mid 20s I started to notice some weird foot and knee pain on my right leg. I used to love to run. However the discomfort got bad enough in my late 20s to where I greatly curtailed the running and switched to mostly mountain biking as that didn't cause pain. I really got into mountain biking and regularly competed in local races. However, in my early 30s I noticed that biking longer rides was starting to cause knee pain. By my mid/early 30s this was a significant issue, and I was no longer able to compete. By around 35 years of age I couldn't run more than a mile without my right calf cramping. Around this time as well my right arm stopped swinging normally. Also, I walked with a limp. Over the next three years I steadily declined until I got to the point that I could only hobble short distances because of terrible knee and hip pain. I was also incredibly stiff and achy, fatigued easily, was in a constant brain fog, my right leg felt like it weighed 1000lbs (making it difficult to drive), and I was generally miserable all the time. Getting myself out of bed and to work was a very difficult chore by this time. Also by this time I had an very difficult time dealing with my kids as they couldn't understand why I was hurting and tired all the time. Ofcourse at the time, I couldn't understand why either.
Over the years I had been in and out of the doctor for limping and pain but nothing came of it until I got so bad that I kept going to doctor after doctor and I finally ended up at a movement disorder specialist who was 95% sure it is PD. Since then, I've seen two other movement disorder specialists who confirmed the diagnosis. Only then did I fully accept the diagnosis. Only then did I agree to start taking Carbidopa/Levedopa (C/L) 25/100.
Fortunately, C/L immediately significantly reduced my stiffness, lifted the brain fog, and helped me move better. I'm up to taking 3 doses per day. I still usually have immense trouble walking however and use a kick scooter to get around work. Fortunately, my wife graciously does most of the shopping.
Now that the medication has allowed me to move again, I have found that exercise really helps improve my symptoms. Throughout the week I do Tai Chi, Yoga, Boxing, Cycling, and strength training. I also regularly stretch. My goals are to keep my medication dose at a minimum and to re-learn how to walk.
Since I have been diagnosed, I have been very open with my family and people at work about my health. I think that overall, though sometimes its difficult to talk about, being open about it has made it easier to deal with. In a strange way, being diagnosed was almost a relief as I finally knew what had been ailing me all these years. Now I'm very determined to stay as positive as possible and live as fulfilling a life as long as possible. This is not easy, but I find so far staying focused on what I CAN do is immensely beneficial. I also avoid feeling sorry for myself as self pity does nothing but make me feel worse.
Thanks for reading.
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Limpmaster
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I wish I could retire....on the other hand my job does give me something to do with myself during the day. And of course much needed income. Definitely have seen that keeping the stress at a minimum is critical. For now, I think losing the income would be more stressful than having to go to work.
I agree with you, finding out for me was a relief however I was older than you. I also agree with you about being opened about Parkinson's to other people. Most of the people are very understanding. Since you just joined you probably haven't heard about John Pepper, he is the man that recommends fast walking for Parkinson's. You can always do a search and come up with a lot of emails about the subject.
Thanks for sharing your story. Its not nice getting a longterm condition but as you say good to have a name for all those symptoms. As well as useful info here you will find the ones that test cedibilty with their claims but no more than expected. There is a good international network of YOPD on various social media sites. All the best limpmaster. And check out World Parkinson Congress site. Worth attending.
You have a great attitude! I have found this to be a valuable resource and I hope you will, too. Continue the exercise and keep the positive attitude. Best wishes always.
I am so glad that you shared this with us! I appreciate your writing this. Amazingly, this is how my PD started also. I had pains in knees and cramps in calves etc. Then I got stiff legged, dragged one legged and had big trouble walking. Finally, walking several blocks to a big hockey arena and then climbing to the top, became such a big chore, I couldn't hardly walk back, after the game, without stopping every 10 feet. I couldn't keep up with my son-in-law and grandson. That was the last straw. For a number of years, like you, I'd been having the pains. I also had essential and resting tremors, but my doctor had never given me a clear diagnosis. So, my daughter made me an appt. at a regional medical center. The Internist there, after testing me, said, in his opinion, he felt that I had signs of Parkinson's, so he had me wait, while he called a movement disorders specialist. They set up an appointment a couple days later. The neurologist found cogwheel rigidity and other classic signs of Parkinson's and put me on a trial dose of Sinemet. The Sinemet stopped my resting tremors, and helped with the rigidity and stiffness. My walking became much improved. So I feel much better. Since then, my medicine dose has been adjusted up, but my functioning level, is so much better than it was for years. I exercise regularly. Mine was not young onset PD. I was probably around 60, when I started having symptoms. I am now 72. Welcome to this forum. I'm sure you will find it helpful to communicate with fellow "Parkies"!
I have some pain in the knee which sometimes goes away and comes back, mostly left. Also I have stiff and swollen finger and palm joints on the side affected by PD (right side).
I taught this is arthritis, isn't it? I rarely had some cramps and tremors in right foot and leg but they went away few months ago ,probably after I started B1.
Hi there. Thank you for your story. I was diagnosed at 49, I am 55 now. I am an ultra runner and I believe mine started a couple years prior to that. I had fallen 5 times at one of my races and then I slowly lost the ability to walk , let alone run. Went to a couple of doctors , first thought it was MS had several different scans . Finally the neuro said I have this medication (cd/ld ) I want you to try and with in 2 weeks I was running again. I still didn’t believe it was PD, but then I had my Dat Scan and that confirmed it. My specialist even showed me my deficits. I am on 6 25/100 cd/ld, azilect and Comtan . I also get Botox injections for my dystonia . I still run but have had to learn to except my new reality and a piece of the old me dies everyday but I’m thankful for my meds and that I’m able to run and work full time still as well. I have bad days but reading everyone else’s stories makes me realize we are not alone and not crazy when we try to explain why our foot just won’t go. I’m thankful for all of you. Welcome to our special group. 😊 Karen
Hi Eric. Your story is very interesting and roughly mirrors what happened to me from the age of 29 onward. I was only diagnosed 29 years later when I had started to shuffle. You can read my story on reverseparkinsons.net.. As the website indicates, I have managed to reverse my Pd symptoms and get away from any harmful medication and live a normal life again. I am now nearly 84 and still very active.
Hi John will definitely check it out. What have I got to lose. My biggest impediment to try your method right now is that I usually physically cannot walk very far without limping and causing pain. I know you suggest that parkies can use another part of our minds to control the leg muscles. Maybe I need more practice? I usually walk the best after some form of cardio like biking, elliptical machine, or intense boxing.
Welcome to our group of Parkies online! It is a great site, with support and a wealth of information from some highly informed individuals. It is really a shock when you first get diagnosed, especially when you're a person with YOPD. (young-onset PD). However, it makes the whole nightmare much easier to deal with on this site - HU, as you feel so supported here, and you can share your experiences and learn so much. It's like having another family, especially when you start to follow certain folks you can relate to, or want to learn from. I am "youngish" too - or at least was considered so by docs when I got my own diagnosis at 49/50. I'm 56 now, and am doing okay. Lots of complaints, but on the whole, enjoying every day, and am out kayaking, swimming, hiking, and still socializing, despite that getting more difficult for me. When I am sufficiently medicated, I look and seem "almost normal". Life is still good and interesting, despite some little challenges in my day with my slow hands, and slower brain to process conversations. I hope you keep positive and believe that there will be a cure in your and hopefully my lifetime! All the best!
I hate that you have gotten this dx so young....I was feeling cheated being dx at 53. I’m so glad you got the proper dx so that you could treat it and that you have such a positive attitude. Good luck and thanks for sharing.
You mention names for symptoms. It's not clear to me what they are. Someone said they have botox injections for dystopia. I thought it was lack of muscle tone so botox would make it worse. I don't tremor at all. The main thing is an intense nausea feeling across my chest and in the back of my right leg when I try to put shopping in bags, get money out of my pocket, washing dishes especially cups, peel and chop veg, typing. I read an article about cognitive mapping of motor functions. It listed a few of the Greek words used:
Bradykinesia, akinesia, hypokinesia.
Then there's rigidity, stiffness, spasm, freezing, akathesia. And overall dysphoria.
Can anyone add to this, its interesting to combine them into a description of the condition and when trying to describe it to people who suggest that I don't look ill so there can't be much wrong just a bit slow, need to walk fasr
Resting tremor. Some people, like me, also, have essential tremor. Apathy. Some people have orthostatic hypotension and/or dysphagia. Nothing irritates me more, than when people find out that I have PD, some will easily dismiss me, by stating that I don't look ill at all, that I look perfectly normal, so therefore, there really can't be much wrong and then if I start having trouble with fumbling things, or walking a bit wobbly, they say, well maybe you've had too much to drink, and you are just a big fake. Not that that response happens very often, it's just an example of how cruel and mean some people can be, when they really don't know what they are talking about. So, generally, these days, I prefer not to tell anybody about my PD or discuss it much, except with my spouse and daughter, and neurologist.
I can relate. Being young and fit I LOOK very healthy. So before I was diagnosed I would complain about aches and pains but nobody took me seriously. Sometimes I thought I was losing my mind. Even now, after my diagnosis I'll tell somebody I have Parkinson's and they'll say things like, "You have got to be kidding me!" I still look in the mirror and ask myself how the heck this happened to me. So I don't blame people for not understanding. I still don't understand.
I know! It’s really hard to understand, like, why, if I take care of myself, did this happen? Did I do something to precipitate this unwelcome ailment? In my case, I had several really bad concussions, where I lost consciousness, so that probably started it. Take care and keep exercising. That will help.
I know that feeling when trying to get change out, chop veggies etc. It's so hard to describe. I don't feel nausea but a kind of fear. I thought it might be anxiety brought on because the task had become a challenge. It's so wierd.
I look fine and virtually no one knows I have PD. They think I'm clumsy and keep over doing it at tennis!
Thankyou. Reassuring to know there's another with whatever it is. Jelly arms sort of says it but doesn't convey the intensity. I'm reading about tension myositis syndrome (TMS Dr John Sarno). Psychosomatic problems
Thanks for sharing. I have YOPD and I am only 30 years old. Try to continue your life as usual and ignore Parkinson's. I take my meds and try to focus on my life instead of staying at home watching my health declining. Survive! Best of luck.
I mostly agree but my hats off to you if you can ignore Parkinson's. This disease effects so much of my life I have a very hard time ignoring it. I seem to move and feel the best after I do the stationary bike for half an hour. During a brief window of maybe an hour I move almost normally and could maybe forget about Parkinson's during that time.
welcome to the group. i also had early onset pd (caused by mercury poisoning) at age 45, my daughter was 2. by the time i was diagnosed 2 yrs later, my daugther was tying my shoelaces, and helping me put my coat on. i am now 61, and functioning like a "real person," thanks to c/l, homeopathy, mannitol, and recently - high dose thiamine. you sound like you are on the right track - give the high dose thiamine a try. many people have been helped with it.
My own story mirrors yours, only substituting back pain for hip and leg pain. My activity was severely limited for almost 25 years and I lived on opiates all that time. Finally, I had a spinal cord stimulator implanted last summer. I am now off all the opiates and walk 3 or more miles several times a week. There is still pain, but manageable with advil. It might be worth looking into. On another note, if this site dealt with fetishes and not health issues, your user name could be taken quite differently.
What a wonderful post. My husband could have used that positive influence 20 years ago. If I could do things differently I would have pushed him a little harder to excersize. I think it would have helped him mentally and physically. Also, being open that you have pd is important. He always felt it was his "secret" and felt people would treat him differently if they knew. That was also the wrong thing to do. God bless you on your journey. My advise to you....do what you can, love unconditionaly, say thank you often and try to stay positive for your family. This is scary for them too. I also believe better treatments will become available soon which gives us all hope. Thanks again for sharing your story.
Welcome to the group, Limpmaster! You will receive support here as well as suggestions and ideas about how to improve quality of life and alleviate symptoms from honest folks who are not trying to make money off of our common challenge. I too had wonderful improvement when I started Sinemet. It’s great that you have always been athletic since exercise is so important for us.
I, too, was struggling to do the things I loved. At one point, I was sure I needed all new Alpine and Nordic ski equipment because I wasn’t able to ski at the high level I was used to in the past seasons. As my body failed me, I secretly worried I was falling apart. Having a diagnosis lifted my spirits - as crazy as that sounds. With c/l 4 times a day, I now can bike, ski,power walk, garden, play Pickleball, and more. I know my enemy and how to fight it. Keep going tough!
I was diagnosed 6.5 years ago at age 57. I was moderately active, ran 3.5 miles a day. Fell running in 2010--my toe caught on the road and had the misfortune of this happening on loose gravel, so couldn't regain my balance. Tore my rotator cuff and bicep tendon; put off surgery for 2 years. I decided to have the surgery right after my PD diagnosis figuring if I ever needed a cane or walker, I needed shoulder strength. In retrospect, I believe the fall was PD-related; I remember starting on my run that day and my feet feeling like they weren't lifting off the ground.
In those 2 years between fall and diagnosis, other symptoms began to creep in. My right foot would cramp up when I walked more than 1/2 to a mile, or so. My left arm stopped swinging. At a wedding in 2011, my upper torso was very stiff while dancing. I attributed it to my shoulder. I noticed I was slower dressing, walking up the stairs, etc. Noticed one day a slight flutter in my left pinky and was very dizzy and tired, went to the doctor, he diagnosed, sent me to a movement disorder specialist who confirmed. I'd already suspected PD from my online reading; my father, still alive at the time in his very late 80's, also had PD. He was a carpenter/cabinet maker and worked evenings in our basement, using lacquer thinner, stains and oils, and worst of all--Formica glue which contained toluene (on the list of PD causing chemicals), so I suspect that's the cause. My mother had Alzheimer's or some sort of dementia. Hadn't known me for years when she died.
I was extremely drug resistant when I was first diagnosed. My entire life, I rarely took anything stronger than a Tylenol, and could count on one hand the number of times I'd taken an antibiotic. Even with the shoulder, I refused to take the NSAID's the doctor thought would be a good idea.
I do take Azilect now, as well as Rytary (extended release C/L) and Neupro patch. I try to keep doses at a minimum. In last 6-9 months have noticed some dyskinesias. Doctor wanted to give me another med for that, but I am experimenting with balancing doses, enough for symptom relief but not enough to cause dyskinesia. I worked up until this year, when it got to be too much. I was walking on the treadmill or outside 35-40 minutes a day, plus doing yoga and I attend a BIG exercise class once a week and do some free weights once a week too. I am finding in the past year decreased ability to do all these, so on yoga days, I may not walk. Have been reading John Pepper's book where he recommends walking every other day. I can do 2-3 miles, 30-45 minutes, some days, but some days the meds wear off and I cannot maintain movement. Did I mention I have terrible off periods?
I don't have a tremor; my main symptoms are slowness and stiffness (and muscle aches and pain). I can't sleep more than 6 hours a night. Like many of you here, I pretty much function and appear 'normal' to most people. I have not been open about my diagnosis and most people do not know. I have been a private, Type A overachiever most my life, so change/acceptance comes slowly. Yoga and acupuncture have helped a lot; I also found 3 years ago a wonderful women's support group for PD. We meet once a month. I was gluten-free for about 4 or 5 months, but fell off that wagon. I do eat lots of fresh veggies, organic meats, lots of fish. I am very protein sensitive, in that my meds don't work if I eat protein during the day, so I generally only eat them at night. Still researching diets--keto vs. vegan vs. ???
I have found this to be a most informative, helpful site. I am glad to have found it.
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