Real Life Stories of Parkinson’s Disease

Parkinson’s disease is a debilitating chronic condition that effects hundreds of thousands of lives globally. Although there is no cure for Parkinson’s disease, support, management and proper treatment can provide significant relief. As with any difficulty in life, support is essential, both from the attending doctor, as well as family and friends. Even more significant is the interaction with others suffering with this disease.

If you are suffering with Parkinson’s disease, whether in the early stage or just been diagnosed, or you may have lived with this disease over years, please feel free to share your story with us through the comment box below. If you have any positive comments or useful advice for other respondents, please feel free to offer you input. Care givers and loved ones of Parkinson’s sufferers are also encouraged to participate as the disease can be both stressful and heart breaking for the care giver.

30 Comments

  1. I am 60 years old and have symtoms of pain in my leg at night, hand shaking, tiredness, and a funny walk with my foot seeming to flop. What kind of Dr. would I go to for help?

    • Hi Kathy

      First consult with your general practitioner (GP or family doctor) and he will refer you to a physician or neurologist for further investigations.

  2. I been diagnosed withParkinson.s three years ago, i get severe pain in my toes sometimes,feel like a muscle cramp,only worst! Is there any
    exercise that may help with this pain in the toes?Which over-all exercises seems to elp people with Parkinson.s Disease?

    Regards
    Rhonda

    • Hi Rhonda
      Moderate exercise may help relieve the cramping to some extent. The movement of the toe is limited and it is being exercised every time you walk although this is dependent on your gait. Try bending your toe to the maximum, holding it in that position till the count of 3 and straightening it again. Repeat the exercise slowly for at least 10 reps. Do this twice a day. This should help with some of the muscle cramping. Don’t bend it too hard and stop if you are feeling any pain or discomfort.

  3. I AM 53 YEARS OLD AND HAVE BEEN DIAGNOSED WITH PD WHEN I WAS 51.
    I WAS PUT ON SINEMET 25/250 -REGULAR ( 4 HALF TABLETS PER DAY )
    I ENDED UP WITHIN ONE YEAR NEEDING UP TO 8 HALVES PER DAY IN ORDER TO EFFECT MY DAILY CHORES.IS THIS OVERDOSING? I END UP IN THE NIGHT
    WITH MY LEFT FOOT DOING AN UNCONTROLABLE TAPPINNG MOTION.THE SINEMET
    IS GENERALLY WORKING VERY WELL.WOULD A CONTROLLED RELEASE MEDICATION
    NOT BE A BETTER OPTION? WOULD AN AGONIST NOT HAVE BEEN BETTER AT THIS POINT, SEEING THAT I RESPOND SO WELL TO SINEMET. IT ALSO SEEMS
    AWKWARD THAT I HAVE NO TREMOR,JUST RIGIDITY AND BRADYKINESIA. I BELIEVE NO TREMOR COULD INDICATE POSSIBLE PARKENSONS PLUS?

  4. I am over 80 and have had Parkinsons for about 6 years. Meds have been pretty successful. Lately I feel almost light-headed and sorta foggy brained in the morns – wears off early afternoon. very disturbing. Too much meds or not enough. The rest of the day I am okay. Docter doesn’t seem to have an answer. Any suggestions.

    • Hi Marie

      It may not be due to the dosage of your medicines. Parkinson’s meds do come with side effects but what you are complaining about is not a common complaint. Even if it is due to the meds, you must realize that these effects are bearable and given the necessity of the meds, you should be grateful that you have responded well to them. Some of the effects will just have to be tolerated. Don’t try altering your dosage unless you doctor advises so.

  5. hi Dr.p.d,
    i am36 year old i have problem of balancing.when i turn i feel like fooling. and when i walk my head is down. and i cant stand on one leg. i cant walk fast.my muscles are very stiff.

  6. Well I’ve had the left hand shake for about 6-7 years I’m 60 years old now about 5 years ago I was started on simmet,mirapex and azilect.And through I was doing well the meds seem to control the shaking well and when I noticed any shaking would be when I got excited or the meds wearing off(I was late taking them).Now I don’t know if it’s related or not but I was pulling a big pull behind rototiller out of my shed and I tripped ,well when I fell I pulled a bicep muscle,I through ,seems I blew the muscle right out.They say they can sew part of what’s left back the rest is to shedded to hold ,do you think it ripped so bad because of me having parkinson’s and my muscles being ridget all the time?

  7. I am shocked that you told a patient(Marie) that she should be grateful for any positive rx response to Parkinson’s Disease. Really? Would you be happy with that quality of life. Try relating to the common people.
    MGC

  8. I am only 43. Tremors started at 39… signs as early as 34. I was widowed at 33, and have been raising my sons alone. I was diagnosed in 09, and symptoms are so bad now that I can barely care for myself. I am completely alone. No family that cares enough to help… and I moved to where I am now just before diagnoses….. friends are all far away. I cannot find ANY support for people with PD living single with kids. I have exhausted search engines… there’s nothing. I don’t know how much longer I can do this! I want to give up.

  9. My grandmother has been living with my parents from the day they got married and continues to reside with them. My grandma has been deteriorating moderately over the past 5 years. She pretty much has all, but one symptom in stage 6. She has become very violent. My question is, when is it time to put her in some type of care facility and how much do they generally cost? My mom loves her and feels bad/guilty for even considering this, therefore I want to be able to give her some feedback from you. Thank you for your time.

    Sincerely,

    Heather Roche

  10. Dear JUST ME,

    I do not usually take part in online discussions but read your comment and could not stop myself responding to it.
    My mom is a chronic PD patient. she was diagnosed PD when was 42 – 43. I was just 2 years old. Now she is 71 and is in a later stage of the disease. she got widow when she was 50 and since then she raised myself and my bro as single parent. Like you, she didn’t have any, ANY sort of help. Trust me having even moral support is scarce.
    She has not only raised in a perfect way but never made us feel as if she is facing a progressive disease. Of course we say her declining in the course of years but the only thing that kept her going was her WILL POWER. She never had given up, and that was her success against the disease.

    I can be reached through my email: [EMAIL ADDRESS REMOVED]
    I may not be of great help to you but can lend an ear to hear and might help you giving advise regarding the disease at the least.

    God bless u

  11. In response to just me
    I was diagnosed at 30 with symptoms at least 1-2 years before that. At the rime my children were 7 and 4 years old, I was divorced and raising my children on my own. I was devastated and thought my life was over – I certainly did not want to live a life totally dependent on others.
    I am now 43, my children are 19 and 16 and although I have good and bad days, life is great. I am still working full time in a demanding but great job, my children have grown into independent and compassionate young adults and although still single, I have had a few relationships along the way.
    So please don’t give up, you deserve happiness and it is possible to be happy and have Parkinson’s – but it does require commitment and persistence – lots of exercise, healthy diet and lots of rest. Most importantly, you have to be in charge of your disease, not your doctors, family or the disease – this means getting to know everything about Parkinson’s and about yourself
    good luck and know you are not alone – there are others out there going through this with you

    • Good advise, I am being seen by neuro dr, mds dr. No one will give me a dx. I think I have pd. they say I have abnormal body movement, tremors. I have ask for 2nd opion. You are correct , I have to be my own advocate. I have to trust myself not others. This is my body.

  12. I am 60 yr old female dx 6 with PD along with a pituitary tumour causing acromegaly. I can cope with almost any of the consequences of both diseases, the latter causing destructive arthropathy resulting in bi lateral total knee replacements, but what i can’t handle is the dreadful insomnia which is ruining my life. i am on SInemet 250/25, Cabaser and Sifrol….i wonder if there are alternatives which might not cause such severe insomnia. I do not sleep during the day unless i am so exhausted i cannot do anything….. i am , or was, a fitness freak, so keeping active is my total focus. This insomnia (2-3 hrs per night) is worse than the disease itself (for me). Any suggestions would be appreciated. I have already had a sleep study done, and i practice good sleep hygiene, Anyone else in the same boat?

  13. have had pd over 30yrs. on dudopa last hope continue to fall and walking very difficult to move onwards .also sifrol symmeterel endewp also have peripheral neuropathy . botox for lower limbs

  14. can somebody e-mail me a copy or info on a woman whose husband seemed 90% better when he took a drug that was for sleeplessness or something OTHER than what it was initally given for and i believe it stared with an A Ambien or something like that. she said he showed remarkable strides though it wasnt long olasting. My Nerologist wanted tp read it but i cannot find it aanywhere If it was you or you know what i am talking about please PLEASE e-mailit to me Ronay.wheeler@yahoo.com i would be forwver grateful And for all of you suffering this like i am Tomorrow is a new day A new way to wake up and say I AM ALIVE HOORAY!!!!!!!!!!!!!!

  15. My husband was diagnosed 7 years ago. He didn’t have tremor but rigidity and slowness. 15 months ago he had Deep Brain Stimulus which had a dramatic effect. He was like his old self. We were ecstatic. Then within a few weeks, not only did his mobility deteriorate, the worst thing of all was the change in his personality. We had had a very happy and contented marriage, loved each other deeply and I would have looked after my husband to the bitter end of this terrible disease. But since about 7 weeks after the op, I started noticing his coldness and remoteness from me. He had no warmth or empathy and it has steadily grown worse. I could get no answers from his neurologist except that “it can take up to 18 months for the brain to adjust”. Before the op, I always attended every appointment with my husband, since it, he won’t let me “take him” as he sees it. He rejects me on every front and I am coping very badly. In rare moments of insight, he says that perhaps he “relates me to his illness”. As well as the terrible emotional rejection, he spends his time at auctions buying things we don’t need. He is a wealthy man but is always looking for a “bargain”, even takes home all the toiletries, even the half used soap from hotel rooms. He can’t prioritize, starts jobs he never finishes and is irritable and rigid in his demeanour. We argue over almost every small thing. I don’t know how I am going to cope. Does anyone else have experience with a post DBS spouse? Is this a phase that he might get through? The neuro says he is “not demented”. But I certainly see differences in his cognitive abilities. Is this the beginning of my husband’s decline? He is now 64.

    • Hi Jennifer,

      My father is going through similar situation currently and I was hoping to hear how your husband is doing since post. My dad seems very depressed yet won’t go see doctor to get help, denies he needs anything. He doesn’t sleep, spends money on things not needed, leaves without letting his wife know, etc. My dad is 65 and was diagnosed approximately 7 years ago. I think he’s borderline stage V, especially with depression.

      I appreciate your help and hope your situation is better or as best as it can be with PD.

      Cindy

  16. My name is Maureen. I was diagnosed with PD 1 1/2 years ago. I am now a part of a PD study group at the Hershey Medical Center in Hershey, PA. It has taken most of this time to come up with the correct mix of medications to allow me to live without feeling fatigued and sick on the stomach. With that being said, I was just involved in a life threatening car accident. I was hit from behind, unknowingly, by another vehicle sending my car airborne into a telephone pole and bouncing off into my work parking lot. I was knocked out and when I woke up I realized my head was ready to explode. The result, severe concussion, lacerations to the forehead and two black eyes. Whiplash to my neck and muscle damage to my lower back. After seeing my car it is amazing that I am here talking about it. I was cut out through the roof and transported to the hospital.

    It has been a month since my accident, I have severe pain in my neck and headaches non stop. I am sleepless most nites due to ongoing leg tremors (which were relieved with my meds prior to my accident). My worriment is how long is this going to continue, how can I get back on schedule once I return to work. My sleep patterns are totally ruined, my muscle stiffness is intense…will this ever go away or is this life long?

    Really frustrated!

  17. Maureen,hope you are feeling better by now. I suggest you calm down through meditation. When you are calm, you can do things reasonably better including getting good sleep. Worry not about PD. Make it your friend because it will be with you for a long time. Better a friend than an enemy within you. Good you are in a PD study group and give the group my message. I have had PD for 8 years and am on Mirapex ever since it started.
    as for stiffness, go for a good deep tissue massage every couple of weeks. Best Wishes for happiness. ahamed

  18. i was diagnosed when i was 69 or 70 , i went to 8 or 9 neuros , finally got a good movement spec, she gave me botox injections i have a tremor in both hands , thumb mostley, im due to have botox in both arms the 1 st of march, it helps some what for awhile, the prob is hitting the rt , moscle. i have a prob getting up from chair, gait is bad, balance is bad, prob walking, freeze in place, if im on carpet it is worse, im 79 now ,not complaining i still get around on my own and drive, i guess im lucky i that respect,i know it is very deficult to diagnose, ive had escential tremor most of my life, took valium to mask its effects on me ,now my eyes are very sensetive to light, i dont know what to do about that,only wear sun glasses most of the time,,i dont have any prob sleeping, take 3 senimet 25 / 100 a day & 50 / 200 cr at bed time,,thats about all that i can tell u/// i wouldnt wish what i have on a dog,,thanks for giving me a opertunity to tell someone about the dis,,,

  19. i forgot to mention , that i would also like to know what the lady was refering to that said that a sleeping aid helped her husband 90 % that would be worth a try,, i relize that all meds, dont work the same for everyone,, i would like to hear from u ,, i understand that there is a new aproach to helping people with parkinsons,in the works,, waiting on aproval from f d a, the clenical trails are are complete,,,thanks aGAIN FOR ANY INFO ,,

  20. My husband has had PD for 30 yrs. I have been his caregiver always. Now he is in nursing home for 1 yr. End stage symptoms, pneumonia s, dysphasia, sweats, anxiety, depression etc. I have been through and seen every problem.
    My best advice for caregivers take care of yourself and know limitations. Get help. Call aging, an agency, friends, family (although hard to find when in need) , palliative care, Ask your dr’s, do research but get help. The person who is ill will eventually need around the clock care, will fall, and many progressive problems. Plan for it! To the dad with children, please if possible ask a relative. It is the whole family affected. Your kids will feel saver knowing you are helped. Many churches have well meaning volunteers. You will probably eventually have to give up your work, driving, and need care. It is horrible but the truth. With help you can keep going much longer. My husband worked for 20 yrs with pd with my help. Good luck.

  21. I am a caregiver to my 59 years old wife who has parkinsonfor the last 10 years. Lately she has been having frequent attack of breathlessness at every medication time this will last from 1hr to 30 mins before and after the medication. She also suffered from stiff neck. I am sharing this with the hope somebody could advise me how to help her. Thank you.

  22. My mom in law was recently diagnosed with PD but we could see the symptoms for the last 2 years. Her father had it as well. She is 74, has always been very active..now she is sitting in her chair and refusing to take meds. I know she is depressed and have tried to help and encourage her but to no avail. I am afriad their Dr. is part of the problem as my father in law stated he was so proud of the Dr. for not putting her on meds. They talk about side effects and when I ask what they are, they don’t know. Any adive. I can’t imagine having this and not fighting it with all my strength. I have been fighting Degnerative Disk disease since I was 17, no 57, just can’t get to the place in my head that says sit down and quit, that said I guess I don’t know how to relate to this attitude…any help would really be appreciated. While I believe you must be in charge of your life, doing nothing just seems insane…yes, I am very frustrated..help please.

  23. My husband is a pd patient three years ago he told me he did not love me and left me and my two boys after 30 years of marriage we were sole mates i was in bits after a year getting on with life my father died in bits again my husband then said he wanted to come back he loved me i took him back i still loved him two years on he now has pd problem is ihave not got same feeling for him ifeel guilty if i leave what can i do

  24. I just turned 53 years old and was diagnosed with PD about 2 years ago. Some days I am simply terrified of where this may go. I hate the way it has taken away some abilities already. I’m a runner and I know longer focus on speed as much as simply finishing. I deal with dystonia with toe curling spasms that strike without much warning during my runs often severe enough to make walking impossible. I hate the way people look at me when I am forced to walk (limp) along the course. I smile wave and keep going. I fear being alone as the last of 8 siblings and single….

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