How I survived 18 years of PD so far

Top Ten things to do

If you think you might have Parkinson’s, in chronological order-

1. Get every insurance policy you can – Life, Disability, Long-term care

At the moment you are diagnosed, you lose all chance of getting more coverage

2. Find a Movement Disorders Specialist

You need an expert- not just your primary MD or a neurologist

3. Optimize your living and working conditions for your best performance and safety

An Occupational Therapist or Social Worker can survey your environment

4. Find a local Support Group that suits you

It helps to be with people who are walking in your shoes

5. Participate in clinical trials

I take 7000 pills a year, because people stepped up to test them. Pay this forward.

6. Keep a positive attitude

Exercise, exercise, exercise – physical and mental; Use it or lose it

7. Tell people about your condition

Don’t suffer alone in silence; Accept help when you need it

8. Don’t work too long

You will certainly do this

9. Don’t drive too long

You will certainly do this too

10. Stay educated about the latest Parkinson’s research and therapies

Everything is on the Internet, somewhere

Knowledge is power and hope, day by day

29 Replies

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  • Thanks alot. I have been diagnosed for two years and I just said to my wife last night I'd like to hear from people who have had pd for a long time. Most of us on this site have not had it as long. I think your experience is invaluable. I'm going to print this out and hang it up for me to remember. I'm 60 and just now thinking I may need to stop working. I'm so tired. Can you write more about your experience with work.

  • To Grayland and everyone else who posted replies-

    Thank you! I was dx'd at age 42 in California, will be 61 in 2012. Worked in biotech research tool development, told employer 4 years later, went on disability in 2005, receiving Social Security disability on first application. Became PD advocate for Prop 71, stem cell initiative in 2004, training by PD Foundation (USA) 2009. Surrendered driver's license 2010. Now active with California Parkinson's Group, California State PD Registry, PD Blog Network, 23andMe, and as participant in clinical research projects.

    It is ludicrous that in this country, families lacking insurance are still bankrupted by health care costs.

  • Thanks very much

  • Thank you...it's a good list. I've been diagnosed for 6 years, but think I coud have had it for almost 12 years.

  • Very good advice. Thanks.

  • Thanks for your advice. I feel that I live more of these today. It helps me and my hope is that I will be able to live many years a normal liv.I have had my diagnosis in 5 years.

    Best regards

    Mr Day

    sweden

  • Excellent. I’ll use this at the next meeting of our Parkinson’s Disease Support Group. We are in a small, remote, rural, mountain community in north Georgia, and our geography presents some unique problems for Parkinsonians.

  • I have had Parkinson's for 18 years . I think your being very negative.

    When I seen you head line I never expect'd your top ten thinks to be rush out to get live cover and that was top of your list.

    DOOM AND GLOOM.

    yours EXPORT.

  • I didn't feel jwong's post was negative-----if anything it was helpful suggestions. Guess it is all in the way one interprets things.......YOU have a nice day EXPORT.

  • As a former isurance agent, insurance would have been at the top of my list too. Once you are diagnosed with many diseases you either can't get it or you pay a much higher premium for the coverage. For me that's not a negative but being prepared for what may or may not be needed in the future.

    The list includes most everything that we all know we should do including maintaining a positive attitude. This site gives us the opportunity to share, vent, inform, laugh, cry, etc. and I am so glad I found it. I've learned so much from everyone on this site. I've mostly learned that in spite of how we feel on any specific day we are all pretty positive.

  • This list is very practical and sensible, and although we may agreed with some/all or not, each of us would have a different list.... or maybe thats the point? people don't know what it is that helps them the most, and it would be a useful think for us all to answer this question once in a while. Here are my ten things that have not helped me survive but helped me live

    1. Accepting that I cannot change my diagnosis but I can change a whole host of other things to make sure that my life is the best it can be

    2. Not being afraid to put myself first and to come to know that being 'selfish' ends up as you being 'selfless

    3. Believing in myself 100%, that I am still capable have tonnes to offer and am not written off

    4. Changing my work situation to something that will work with me whilst I am capable

    5. Relying 100% on my care team. My PD nurse, Consultant and GP and NOT reading anything about PD. If there is anything medical I need to know I ask them. A little knowledge for me can be dangerous

    6. Keeping motivated and inspired. Trying new things, ditching anything dull, being bold and adventurous. Thats how I have ended up banging the drums!

    7. Not moaning, complaining, being needy, getting bitter .... trying to be balanced calm, have grace and patience

    8. Being realistic but at the same time knowing so many things are possible

    9. Planning thinking planning thinking.... about everything

    10. Being cheerful, optimistic, full of joy, happy, supportive, kind nice..... to the best of my ability

    10a. Penny sweets & the Clash

    smile x

  • I have had PD since I was 49 years old I am now 63 and feel better than ever, thanks to seeing the right doctor, she in a specialist in NYC. Attitude is very important, I feel there is too much negativity on this site,I just joined a short time ago and we all have to enjoy life as much as possible. Right after I was diagnosed I remember having a hard time telling my friends, well one of my best friends who I struggled to tell got cancer and died shortly after, We never can tell what is ahead of us maybe a cure faster that we thought. Keep smiling!!

  • I think, for the most part, we are a positive group. Everyone has bad days and this is a place you can share the good and the bad with people who know what you are going through. We're all here to help each other get through the highs and lows of living with PD.

    I am grateful for everyday that I wake up and my feet hit the floor before anything else does. LOL!

    Have a great day everyone!

  • Thank you for your Post. I am a new bee. I was diagnosed Dec.07,2011. I am already a Member of the Michael J. Fox PD Foundation. I have signed up for a clinical trial and will participate in DNA testing. I try to stay busy. I work in my garden and have an old Jeep I am restoring for my Grandson. I have been retired and on disability for 7 years now. The PD is just the latest thing I will have to navigate in my life.

    THANK YOU FOR THE ADVICE and GOD BLESS YOU ALL

  • Henderson -Heywood has a view that as the sole caregiver for my wife (age 70 and I am 74) I agree with. One of the worst days was when she found a short video on Utube by a Baylor doctor that told how those with type 2 Parkinson's and who do not suffer tremor are the worst off because they will suffer earlier dementia and that the meds don't work so well. She was devastated. That 2 minute video did real damage - the Doctor should have known better.

    She has many falls so her limitations are almost totally related to lack of balance.

    She will no longer go searching for opinions other than those of her GREAT neurologist and are busy planning a vacation touring Victoria Island as soon as spring arrives.

    I agree on the issue of long term health insurance which we did buy about 9 years ago - before PD diagnosis - the other insurances are very much a matter of an individuals age and financial situation.

    Dave R

  • I agree with you regarding the internet searching. While knowledge is power I would rather differ to the professionals that know my case to administer to my specific needs. I signed up with the Michael J Fox foundation several months ago and have done the DNA test and would participate in a clinical trial if my Parkinson's Neuro thought it would be a benefit to me.

  • Good advice, I'm on my 13th year. Agree with everything said.

  • Well said and outlined. As for me:

    1) Through my previous employer I receive LTD insurance/income. Did not get Life insurance before my diagnosis( now 8 yrs w/PD) but saw my insurance agent last week and now premiums $355/mo for a 500K, 20 yr policy. The same amount of policy for my wife only $78/mo. Long term care....haven't thought about this yet.

    2)Have a movement disorder specialist but now contemplating switching to a different specialist sometime in the next year since current Dr. has no bedside manners, has virtually given up on changing or adjusting my meds on an individual basis after I explained to him that certain meds were just too expensive for me to buy ie Azilect. Further stated that he doesn't have any other arsenals to offer me. Left room without an official, "nice to see you again, return in 6 mo. so he left me hanging if we were done. No professional courtesy here even though I am by training and experience a colleague.

    3) I possibly could optimize my living condition better but raising 4 young children is tough enough on us keeping our house in order and fall-free precautioned. Work.... forget it... they forced me into permanent LTD.

    4) Support group, well I know of it's potential benefits but in reality I have not looked into this, yet. Don't ask me why?

    5) Would be nice if my neurologist took more of an initiative role and helped me pick and enrolled me in clinical trials. In fact last Sept. I took the initiative and enrolled myself in a gene therapy clinical trial at my Dr.'s clinic only to learn that after I was scheduled for brain surgery the following months, that in reality I was later disqualified after my initial tests because I apperently did well on the preliminay tests and the research committee felt that I could incurred later risks with my cognition if I were to have had this clinical trial surgery.

    6) Keep a positive outlook.... well I do but can't help if sometimes things feel differently from time to time. I am also in a Tae kwon Do martial arts class and I am now in my brown-red belt. I am now 4 belts away from achieving my black belt.

    7) Telling other's about my condition is not a major problem. But I do like to choose who needs to know.

    8) Work? Occupation-wise I'm no longer in the work force. Been approved for permanent LTD till age 65 yrs. Still batttling with my SS benefits approval as I've been denied twice. Now facing my 3rd appeal in June with a Judge.

    9) Driving I still do but less often since now my wife does most of it.

    10) Staying on top of new and latest Parkinson's research and therapies is second nature to me since I have a medical background myself.

  • Can't emphasize the importance of insurance enough. My life insurance wiith John Hancock has a disability clause wherein my premiums would be paid in event of disability. But I forgot about the clause at the time I was diagnosed disabled until over a year later. Hancock refused to honor the clause because it supposedly required the disability to be reported within a year of diagnosis. As a result I have to pay my premiums and got no benefit from the disability feature. LESSON LEARNED: ins companies don't disclose all the conditions /fine print for the layman.

  • ONLY ME.

    Let say you hadn't done your top 10 .

    I am in the uk and you are in the us. Maybe your right.

    I can't get my head a round you have just been told you have PD and you thinking of insurance . Please tel me why

    yours EXPORT.

  • Thank You this helpful info...I was diagnoised in 2008 at the age of 48....I am now 51 almost 52 and have had it progress rapidily, I had to quit work cause I'm always so tired now i garden and am getting very aggravated with the SSA dept..they drag you thru the system

  • I have found that the more I learn the better I'm feeling.

    It helps me with questions I can ask the Dr., making the visit more of a conversation than just a visit.

    I did not have a Dr. who encouraged exercise, but found out I felt so much better when I exercised. Then I read about studies to prove it helps.

    My meds were not the right ones/amounts for the 1st 3 years. I had no information, at that time, to ask the Drs. if I was getting worse because of PD or because of the side effects of being overmedicated/wrong meds.

    The positive spirit of the blog has been the most helpful.

  • Just being doing a catchup on the blogs. This one is really interesting.

    Export, I also live in UK. Free prescriptions, free consultants and back up. I feel so much for our American friends who in most cases have to fund their meds and care. So, I have to disagree with you on jwongcpg having insurance at the top of his list. It is not negative, it's self preservation, totally practical and makes good sense to me. I appreciate you have been round the block more than a few times and got the tee shirt so long ago it has faded but your long experience of PD could be invaluble. I think we would all learn a lot from what you have been through in a positive way. I do admire you. For the rest of us we get it on/off the best way we can. Be well

  • jwongcpg,

    Thank you so much for your initial email. It is how I have tried to live, too and it works. The first few years were tough but now after:

    • being discriminated against by a dopey manager at a company that should have known better—(ADA is a FEDERAL law!) filing a suit against them then settling out of court;

    • having to file for disability and hearing that it would take forever and it was a month only;

    • havingTWO DBS surgeries; trying to find an expert programmer because of the complexity of my case, and

    • still remaining positive except once in awhile————

    I am proud to say I am now running my own small business in my original field as a graphic designer, and am contributing to the household as much as SS will permit; love my Movement Disorder doc and my neurosurgeon and especially my programmer (she's brilliant) AND am amazed by my orthotics professional who has changed my awkward gait just by changing shoes.

    Yes, I can feel the progression and that's a bit tough, have had falls and freezing but you know what? I've grown as a result of this. I won't take no for an answer to the insurance companies, I am MUCH more aware of others with disability and my counselor told me I am "strong, stubborn and willful". After the 5th time he said it, I looked him in the eye and said,"Look pal, you would be as I am if you had this"

    Yes it's an awful disease, but you CAN overcome your own reaction to it. "Mind over matter" My mom used to say and she was right. Evercise IS key; I live it.

    So EXPORT I strongly disagree with you and hope you can overcome your issues. This is an online support group and I support you EXPORT by gently saying to you "Move it or lose it" because we will lose it. "I can't get my head a round you have just been told you have PD and you thinking of insurance . Please tel me why ". Because all the folks on here are practical and planning their future——we have to!

    My husband is an AA member and, like him and others, it's "one day at a time"

    and the Serenity Prayer.

    Good luck, all, and hang in there.

    dottie

  • Very well said! Amen!

  • You are rIght on target. Could not agree more

  • I must admit how surprised I am by the extent and depth of responses to my Top Ten list, which I blew off the top of my head; I was just frustrated by seeing the same questions being asked over and over on the Web.

    However, in this blog what strikes me the most is the difference between the US and European National health care systems. Over the past several years, we in the US have looked longingly over our northern border at the Canadian system. But so many posts here complaiined about the response to chronic disease in the UK Is this a sampling bias, or is there a widespread opinion that UK healthcare for PWP is inadequate?

    Thanks again for ALL responses!

  • I think your top ten is a great tool. I too have printed it. Remember knowledge is power. This is a very researched condition. I am remaining pretty positive that some sort of "fix" rather than cure will come up in my lifetime. The power of a positive mindset is so so important to me. The one area I really struggle with is toning down at work it really bothers me but I know I should do it and I know I am indeed struggling already. It does not feel nice to see someone else doing your job.

  • Well Said every one, its a good job we are different other wise our answers would be boring !

    Do you know that here in the UK as Drew has said there are many thing that we take for granted.

    Every day I thank my lucky Stars that I have the gift of life

    I thank the lord I have and still am in love with my husband and him me.

    I expect and always have at least one good belly laugh a day to keep the parkers at bay

    I exercises because my 9 yr old son needs me to play catch or football or karate with him.

    I need to hear his laughter as I run after him and catch him to tickle him.

    I hear my voice and ensure others hear my conversation so ~I practise in the car.

    I want expression on my face so I make at least 10 different faces whilst driving and have remembered not to continue when at traffic lights to alleviate car crashes.

    I need to feel proud of myself so I ensure my posture is perfect every other minute I stand.

    I remain mentally active and give myself tasks that I have always done and still do to an exceptionally high standard.

    I push myself and when I reach my limit it is time for bed and boy oh boy do I sleep and my legs are too knackered to move. Cos I also work full time.

    Oh I make silk and dried flowers for weddings as a hobby and have raised over £6000 for Parkinson ~UK

    In 2010 I received outstanding volunteer from Parkinson UK and was presented with a plaque and certificate in a ceremony.

    But above all else I look after myself my family and my Parkinson's family every day.

    Cos I believe that God loves a trier and by goodness he has gone one strong willed Geordie lass here who knows more than she should about the Disability Discrimination Act and could write a book on her life. It would be funny with practical advice and have the ability for everyone to identify.

    Now then guy's put the kettle on I'm off me high horse and need a full cup so who's medication is working ? your mam for the making of the tea!

    Have the best day you can have as Drew likes to say and I mean it too, bye for now I'm off to work. Gazelleuk

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