How long do I have?

I have been diagnosed for 2 years, and I am 54 yrs. old. I also have fibromyalgia, which makes it difficult to figure out which is getting at me.

The hardest thing for me has been watching my short term memory disappear. I have always been agressive and hard working, and now I can barely finish a sentence without struggling to find the words. Feel like I'm being chased through time. I miss ME.

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  • The answer to "How long do I have" is different for each person with Parkinson's. I met someone last week who was diagnosed 31 years ago! He was 19 when diagnosed and is now 50.

    I miss my old self too, but I'm fighting PD tooth-and-nail.

    Some of the hardest symptoms for me to deal with have been speech and cognitive impairment. I urge you to find a speech pathologist who specializes in Parkinson's. I'm doing speech therapy right now and it's helping immensely.

  • I am/was and RN, my work put me on an unpaid leave due to loss of congitive and physical function. My medications were adjusted several times in an attempt to continue working. My doctor has now told me that I can no longer work as a nurse. At first, I was not in agreement with him, now I see that I could have affected an adverse outcome for patients. There were days when I could not remember how to do something that I had done hundreds of times before.

    I also have speech problems, mainly when I am fatigued. I am a single mom and could not afford to keep my health insurance, so cannot afford speech therapy either. I have been denied disability payments, I know that is a norm and I will continue to appeal.

    I have been told about people who had PD for long time periods and I wonder if some were mis-diagnosed. Someone told me his grandmother was diagnosed in her thirties and continued to be active until her 90's. He said she was a pilot and continued to fly a plane into her 80's. There are days that I am not sure that I am safe to drive a car!

    Knowing how I have been affected, I cannot imagine that someone could still be active and clear headed after 60 yrs.with the symptoms I have experienced!

  • i agree...i also had to leave my job as a result of parkinson's! fortunately i have been able to get disability insurance...but you have to wait 24 months after you get it to get medicare! how crazy is that!

  • Hi JoelSchnoor, when were you diagnosed? Oops - just saw the above remark was posted 2 y ago! Are you still OK??

  • I was diagnosed 25 yrs ago. Two yrs before that, I was mis-diagnosed with MS. PD progresses differently in everyone. I do have some short term memory loss, but no more than my husband, who does not have PD. Keep fighting the fight! Eat healthy, the less preservatives the better, and exercize as much as you can. Most important, keep the stress out of your life. (Easier said than done, in my case) Be positive and happy!

  • Good comment Joel.

    Please allow me to add, i'm 58, also diagnosed at 52. May I ask a couple of questions: Have you had DBS, and what meds are you taking?

    Thx,

    Steve

  • not familiar w/DBS. I take Comtran, RequipXR, Cordibo-Levido, for Parkinson's

    May I ask, if you were diagnosed six years ago, what are you're outward symptoms at this point,

  • I was diagnosed 11 years ago at 54. It is difficult to say how much of my memory loss is PD or age related.. Either way.......what was I talking about?

  • Good one~

  • A sense of humor is a great asset with any challenge in life!

  • I am 75 and was diagnosed with Parkie in 2001. Early on, I was lucky to be chosen to take part in the Lee Silverman Speech Therapy. It is an intensive course that runs for about a month - and I mean intensive. Brilliant!. I have done quite a lot of local preaching, and also am invited to speak about life with Parkie at places like local Rotary dinners and U3A. My husband sits where I can see him and signals me when my voice begins to drop. I'm not saying that Parkie doesn't get me down sometimes, but I'm damned if I will let it take over all my life. Fight it by doing as many as you can of those things you enjoy doing.

  • I agree with you wholeheartedly! This visitor-come-to-stay will not control me, my thoughts, my life or my future. I am still me, just a new chapter/version!

  • I have felt that same need to educate the general public and most of all those who I worked with in the medical field!

  • Good for you. One morning in May 2009, I woke up with tremors - left leg and hand. Only went to a neurologist in Aug 2011 and was then diagnosed. I am fighting the disease, what else can we do!

  • i had not thought about speech until reading your post...and realized my husband is constantly telling me to speak up..and i realize i am probably not enunciating as well as I previously did...another of those PD factors that can slip by until someone brings them to your attention

  • Hi again,

    You might choose to do some research as to the side effects of some of the meds u r taking to help you, and your doctors, be more certain if the if the cognitive issues u r having might be exacerbated by the meds or the P.D., or both. For example, my neurologist started me on Requip (which does work well for many, but was not at all good for me.) I was falling asleep at red lights, and mid-sentence while teaching the classes I used to teach when I was still employed. The Requip (not condemning it - again it works very well for many) also led me to have some pretty disturbing hallucinations, depression and painful edema. Got off of it, and once some very bothersome withdrawal symptoms went away, all of the aforementioned problems simply dissipated.

    DBS is Deep Brain Stimulation Surgery. So to answer your question about my current symptoms I will need to be a bit verbose - sorry! had this about 14 months ago and personally had excellent results. Before the surgery I was suffering from horrible leg cramps, embarrassing urinary urgency issues, seemingly permanently clenched toes (made walking very painful and difficult), problems standing long enough to cook a meal or wash the dishes, very poor hand/eye coordination, lots of back, hip and pain, intermittent freezing, ongoing depression, Parkinson's "Mask", total loss of libido, balance problems and issues with enunciation and voice volume. Now, one year post-surgery I am free of all of those symptoms except for mostly missing libido (darn!) the balance and voice issues.

    Also, post operation my med levels were cut in half from 8 carbidopa/levodopa pills per day to 3 per day plus an extended release version of the same med (1 before bed). Subsequently many of the side effects from the meds are gone. And hopefully the long term side effects of taking the meds are also pushed back (brain damage, kidney damage, etc.)

    One question for you...are you seeing a really good movement disorder specialist or a more general neurologist?

  • My Dr. is Mass General at the movement disorder clinic.

  • Hi......having just come home from work having had the past 2 weeks off with a virus which knocked me for six; your post really touched.

    I truley hope you are feeling a little more positive with the comments you have recieved so far.

    I am 51 and diagnosed 5 years ago but it could be 6 whose counting...anyway. I have to say when I am having a bad'turn' so to speak and even in the last 2 weeks I felt absolutley crap and everything started to get on top of me. Everything took so much effort and even when I thought I was improving and attempted anything I seemed to go back a step again and to be honest its scary stuff because you are not in control.

    Having gone back to work today my focus has been less on myself and I think it has mentally done me good to go back possibly not physically as I am knackered now.

    I think what Im trying to say is that I have found it goes in a cycle and when Im feeling good I realise how bad I was feeling during a bad spell. It is hard to be positive in those times.

    Do you work or have other interests at all? Please I am in no way trying to trivialise how we all feel I just know that doing something anything that can take the focus off my PD works for me.

    Take care

  • I had been the Exec. Director of Shore Support, Inc. , a non-profit which lasted 15 yrs before I had to quit due to the fact I could no longer write, type, or remember anything. My husband is a commercial fishermen, so fish is not only for dinner, but for its conversation!!

    The Board elected to close my 501C and it is no more.

    For the past seven yrs I have been president of another non=profit which has a goal of building a monument in honor of fishermen past, present, future. Not full time, volunteer, but I have difficulty keeping up with it.

    Have great exercise equipment, but struggle to keep up w/work so never have the follow through.....I get started in a plan, have a bad turn, and all momentum passes.

    It makes me incredibly sad to have closed Shore Support, no one has taken on my work and fishing families are failing.

    Enough lamenting. Sorry.

  • your comments about momentum really touched me...in all my working years I was always a multi-tasker...and now if I complete one goal I set myself per day I'm happy...i find notes are important now... i think I will remember something for the next day...NOT!!...best to leave myself prompts by my computer...

  • Hi, I just joined today and read your entry. My name is Therese and I'm 58 years old. In 2002, I began having pain in my lower back and hips, with difficulty standing and walking. The MRI showed 'signs of degeneration due to aging and osteo-arthritis. By 2007, I became completely disabled. Standing and walking were unbearable and now my pain felt all over but with the 'epi-center' still in the lower spine and hips. I was diagnosed with fibromyalgia and chronic fatigue. That was last year. This year I've been diagnosed with Parkinson's. This year I can barely stand and walking is only a couple of feet. I blamed my memory loss on fibro-fog.....now I've been told that my Brain MRI shows signs of early dementia. My speech is getting soft and I'm having difficulty putting thoughts together before one part of the thought has run away somewhere. I used to be a Motivational/Educational speaker. Now I don't trust myself. In just 9 years, I have come to this. What is in the future for me? I don't know. But for today, I find myself cherishing moments like yesterday at my grandson's 9th birthday party when he stood up and yelled, "I'm so happy because I have the best family ever!"

  • Deb,

    Even the healthiest people have no idea how long they have to live, so make the most of what life you have left! I'm the president and exercise leader for our support group in Waco, Texas. We meet Tuesdays and Thursdays at 3PM for an hour. On the 2nd Thursday, we split the Parkeys and caregivers into separate rooms so each group can be totally candid about their concerns. On the 4th Thursday, we feature either a guest speaker or show a video of a lecture obtained through a PD national organization. NPF has a particularly good archive. The other meetings I lead the group in an hour-long chair exercise program which I developed by taking the best moves from quite a few videos. I'm 68, was diagnosed at age 61. I take Azilect in the morning, along with two Carbidopa-Levidopa and one Amantadine. Every three months I get botox injections on the left side of my neck which has miraculously helped relieve the dystonia I was experiencing. I am in my first weeks of the Lee Silverman BIG exercise program designed to help Parkeys with balance and gait. I plan to take their speech therapy course after I finish this course. I am an avid reader about the disease and would offer the following advice:

    Exercise, exercise, exercise. I was a couch potato before I took control of my health; now I have a fun, productive life, have strength and energy.. Get a second opinion from a neurologist who specializes in movement disorders, if your neurologist doesn't have that specialty. Some neurologists seem to throw everything they can think of at you to see what works. This action may have saved my life. The first neurologist I saw kept upping my dosage of Requip every visit, and I kept becoming more zombie-like. The second and currrent neurologist is a movement disorder specialist and took me off Requip and onto Carbidopa-Levidopa, considered by many doctors to be the "gold standard" of Parkinson's medications. Drink lots of liquids, eat well (small portions more often), and get a good 8 hours of sleep each day. Read everything you can find about Parkinson's...WebMD.com and caring.com are two websites that have special PD sections. Get out of the house and be with people and friends and be positive and upbeat. Falls and pneumonia (usually a result of being hospitalized for the fall) are two of the more common ways that Parkeys meet their fate, barring other diseases being present. Contact your local agency on aging for any information on fall prevention classes. Install safety bars in the bathroom. Wear sensible shoes. I could go on and on (looks like I already did!)

    See if you can find a support group near you. Sure, you'll see some folks who are in an advanced state, but there will also be those in similar circumstances to you and you will find the kind of support you need. As our support group's T-shirt reads: "INCURABLY OPTIMISTIC" Hope you'll feel that way soon.

  • I am optimistic after reading your reply. TY

  • Me too. Diagnosed only 6weeks ago, still trying to figure it all out. Also have a brain tumor which will be gamma rayed away in two weeks. Must remain positive! Age 74 very active.

  • Thank you What a big help you are. I am 74 and just diagnosed 6 weeks ago.

  • Deb, I understand how you feel.. My outlook on life, as I knew it, changed dramatically 8 weeks before my big 50 birthday, NINE years ago. Six words from a neurologist snapped me to attention. young Onset, Early Stages, Parkinsons DiseaseOThe future I had planned for, that someday had arrived, rather abruptly. It was that day!

    I learned early on to first of all, make it a daily habit to stay positive. I learned just by touching base with someone brings happiness to them. The energy we use up worrying is the same energy we could focus on so many other issues.

    You indicate that you miss you. Deb, we are who we are, right now, this very moment. I made up my mind early on to focus on what I am still able to do. actually, some PD meds enhance their creativity!

    Now there is a positive note!

    Keep looking UP!

    Becci

  • This attitude is how my plan for handling PD originally. It's hard when my body changes my plans, canceling appts. w/friends & family.

    From the postings I've read I've got to separate emotion and kick some but with the body I am in NOW.

    Thanks to everyone who commented and shared your stories.

    God bless all of you.

  • I think it is true about creativity...I crochet alot...and write poetry etc...am a self taught artist...and these things are still there; just need to plan to complete them in a manner that follows my body's time clock. In fact that is something I am learning...if I am sleepy, I nap, no forcing myself to follow a schedule that doesn't work....you learn to work within your limits...

  • If I could add a comment as one of the co-founders of PARKINSON'S MOVEMENT, it would be to seize the day (carpe diem) and remember....

    "Don't count the days, make the days count."

  • Thank you

  • Thank you Jon for your comments. My neurologist encouraged me to be selective when choosing my battles. If I worry about something that MIGHT happen and it does not, I have wasted my energy for nothing; if I worry and it DOES happen, then I've worried TWICE using twice the energy. I choose to lift my concerns up to the One who Created me, and trust Him to handle them.

  • Good advise!

  • I was a serious over achiever in my job...always have been a great multi-tasker...till I went to work for a pest control company in arizona in 2000...about 3+ yr into the job they said i was slowing down and not doing as well and ultimately laid me off...terrible blow to my ego. We moved to my husbands home state and after arriving there was diagnosed w/ Parkinsons 2004( some research I've done indicates exposure to pesticides can escalate the disease in someone w/ genetic markers for it)

    i have been fortunate that my disease is progressing slower than most; but I have balance issues,and my husband says I seem to be forgetful and lag when I start projects....I spend alot of the time on the computer because it stimulates me(Facebook) and the games prompt you alot; so you can keep on top of them. Wish my household chores could prompt me.

    My 94 yr old mom lives w/ us, and I finally got our daughter who is in nursing home care to come bath my mom several times a week after I almost took a tumble trying to help her out of the tub...I feel so inadequate compared to the old me...we used to run our own trucking biz and I did everything; billing,taxes,reports etc.) Now my best friend is my online banking because it makes it easy to take care of.

    This site is great because it makes me realize that it is not me failing...it is the disease taking its toil...alittle easier on the self esteem.

    I suffer from sleep apnea as well(almost no REM sleep; even w/ the CPAP)..but after another article realized that is also a symptom of Parkinsons...and my jumbled sleep habits...I nap every day at least once; and seem to find late nite on the computer a comfort...I think it is because everyone else is asleep and I don't have outside pressures pushing on me.

    Recently I started Nuvigil to help me to be more awake and alert during the day...and it helps...but alas, I have fallen into that confectionery delight(THE DONUT HOLE) and can't continue that medication till after the new year...so have resigned myself to naps as usual...LOL

    I really appreciate all the imput here...its great to realize I'm not alone; and I don't feel as hopeless knowing others deal w/ the same pitfalls in their lives...in fact I am motivated by one writer to try the fitness class at our local senior citizens...they do alot of sitting exercises so I don't need to worry about falls.

    Looking forward to more motivating talks w/ you; my new friends.

  • Thanks for sharing. This site has shown me the things I've been TRYING to do are the right things. I just need to try and break from the emotional aspects and work on smiling my way through.

  • hi there Deb,chin up doll if its any consillation i was diagnosed at 22 yrs young and im now 47 years young ...last year was also diagnosed with breast cancer which resulted in a masectomy .... i take each and every day as it comes and try to keep positive and you all know how hard that can be on those down days ... over the last 3 yrs my symptoms have eased and i have decreased meds down to 1 madopar an 1 amantadine @ 8am same again 3pm and 2 madopar 1 amantadine @ 9pm ..i will not succumb to being a Parkie...i am also new to this site and its wonderful place and so far have found everyone i have met very special people! I THINK WE WLL LIKE THIS PLACE! =)

  • I'd like to thank everyone who responded to my blog. I never had anyone to talk to about all this; Dr. writes scripts, family avoids. Thank you for this nook of our daily lives, where you don't have to try to be or get better. Just be who and what you are today, which will make me even stronger to deal with the bigger problems when and if they arise tomorrow. I do like this place.

    Blesses.

  • hello to all of you incredible parkies - my little story started, we now realise in 2007 when i felldown the stairs - backwards over the newell post and cracked a vertabrae - after that i decided to give up work - before it gave me up !

    in 2008 my wonderful husband fred and i moved to france basicaly because we wanted an adventure before we died ... in 2010 i was diagnosed with PD an dnow i am rtually wheelchair bound - i can get around the house with the help of a walking frame but it exhausts me and makes my arms and wrists hurt - alot .

    i ma 65 and my husband is just 75- i am with a young nuerologist in limoges hosp - who is very good i ma on such high meds and he has just added NEUPRO patches as he thought the reason i was, and am not responding to the doses is my gut may be absorbing the meds before it get s into my brain - so i have just stared on the4 mg dose and i can go up - week by week to see if anything improves - otherwaise i could be looking at a diagnosis of MSA

    so there we have it in nutshell - i love my life here in france with fred and we have many good friends who come and visit us - and family too - so i am very lucky .. i know that i am not as bad as some people as i have no shakes at all - just the awful thought that i may never walk again - i am tryng too d som eescersie each da even just lifting my legs up and my arsm s too but i cannot do the nintendo which i wa sbiught for xmas last year now #

    love to you all and keep up the fight xxx

  • So this doctor walks into the patients room and tells him, "I have bad new and I have worse new." The patient says. "What's the bad news?" The doctor replies, "I'm afraid you only have 24 hours to live." The patients says, "What could be worse news than that." to which the doctor replies," I was suppossed to tell you yesterday!"

  • Like many of you I am new to this but sincce I discovered it it is on my daily routine.

    I look at PD as a battle I will not win but a battle I will fight. To quote poet Dylon Thomas "Iwill not go quietly into the night but rage against the dying of the day"

    I'm lucky in that my PD is as a direct reesult on my two tours in VN and contact with Agent Orange. It took almost 40 years to be dagnosed with PD but the VA and with help of DAV medical bills are taken care of. For me now active life with pleenty of physical exersise is vital and important also speech theropy I wwork for the National Park Service and with the exception of one supevisor I have been accepted and helpled So each day is a new battle I look fwd in facing. MJF foundatiion is great aand have participated in the NYC awareness day and have my own Golf Tourney, thanks to my daughter Sarah, were PD awaress is put forth to educate others. Fight the fight as one said do not count the days but mmake the days count

  • I've been diagnosed since I was 40 which was 21 years ago. I just rode 105 miles in the Team Parkinsons STP Seattle to Portland Oregon bike ride. I was on the back of a tandem bike but that has given me the confidence to ride my single bike almost daily since. PD is a lousy diagnosis but there is no way I'm going to let it easily win...so I fight on every day for 20+ years now. My doctors just climbed Mt Kilimanjaro with 3 PWP's recently diagnosed. Your life is not over it just got more challenging.

  • I'm a mess already and it's only been two years so I love it when I read something like this. Thank you!

  • Putting my husband on co q 10" vit d -3' b complex and other nutritional supplements have helped with this. I had him tested for deficiencies prior to going on these. He has been off all pd MEDS since December 2012 as he built up intolerance to them and the HORRABLE side effects the drugs caused. He has come to the point of his voice being a whisper so am looking Into getting him a device to help amplify so he can be heard.

  • Sick humor alert...

    So i asked my doctor the same question: How long do I have, doc.? He replied: 12. 12? i replied with disbelief and panic edging it's way into my voice. 12 What? 12 Years?, 12 months? What do you mean by 12? My doctor replied: "11, 10, 9..."

    =)

  • Hi DebShrader, As far as my knowledge go (which is not much) PD is not a death sentence. I think the problem can be that once diagnosed with PD people tends to sit and wait for the symptoms to worsen. Get up and live your life. Use Lumosity to do brain excercises. and do excercises - I can say this to you because that is also how I felt when I was diagnosed - I felt like going to bed and lie down and wait to die. Although there is no cure, there is a lot one can do to keep going. Good luck to you and try to stay positive.

  • I first was diagnosed w/ PD after going to a DR thinking I had fibromyalgia( aching sore spots in arms,joints)...but was shocked @ his diagnosis...after doing research I knew the probable cause; and that if there is a genetic pre-disposition U can get it if exposed to factors...I remember as a child my grandfather having tremors in his hands...being shaky...I think it was PD...it is helpful to know others are dealing too...

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