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.
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.
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
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?
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.
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.
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.
Jigna Shah
This can be due to many other neuromuscular disorders. You should see a neurologist for a conclusive diagnosis. I would advise that you take a look at this article on Differences between Parkinson’s disease, Alzheimer’s disease and Multiple Sclerosis. Take note of multiple sclerosis given your age and the symptoms you are currently reporting.
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?
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
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.
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
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
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
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?
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
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!!!!!!!!!!!!!!
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.