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#58116 Forum Terms and Rules

Posted by Forum Admin on 19 June 2013 - 08:53 AM

Forum Terms & Rules
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  • genden69, hardlypie6, Gautam and 82 others like this


#102066 Newly Diagnosed

Posted by CindyB on 24 September 2015 - 12:11 AM

I was your age when diagnosed. Fast forward 10 years, or slow-forward may be more appropriate (see, still have the same dry sense of humor!) and here's the top 10 things I want you and any other newbie to know. (Excuse errors n typos. Keyboarding on my phone at 1am)

1. This can be a slowly progressing disease and by what you've described, yours is slow
2. You are going to get a whole lot better b4 you get worse.
3. They say this disease always gets worse over time. I'm not so sure that's true for all. Even if it is your truth, it's not a straight downhill slide. More like a at stock market that trends lower over time but is down and bAck up again as we work out temporary solutions to symptoms or side effects.

4. Don't think it's best to stall off taking meds as long as you can hold out. After 10 years is taking meds I have never felt as awful as I did when first diagnosed and waiting to start meds while I tried to fix my problems myself with PT, OT, exercise. Get yourself optimally medicated so you can function and move as normally as possible. Getting meds optimal can take a year. It's trial and error to find the right mix for you. Get a good MDS

5. When you are back to your new normal and walking better start exercising that medicated body. Get a good PT and a good fitness trainer. Cardio. Strength. Core stability.
6. Know that if a new problem happens quickly it's either a reaction to meds, something else going on that is feeding the PD fire or something unrelated to PD.

7. PD impacts mood, emotions, thoughts feelings and faith. PD now and fears of PD future impacts all your relationship. Keep en eye out for that.

8. You are not alone. There are forums and online PD privacy protected support groups and real in person support groups. Don't be afraid of what you will see. Just find or start a young onset group. If you want to be invited to an active but unlisted young onset FB support group, message me.

9. Get educated on PD because doctors are guessing what to do. Also your body ailments will get compartmentalized to different doctors and you have to sty in charge of it all. Read stuff online but don't get overwhelmed. You don't get everything.

10. Have hope. To have credible hope for your own future find and stuck with people who have had it way longer than you who are still doing well enough. Till you do, let me be that person. Since I was dx 10 years ago at 48, I left a bad relationship, moved to a new seaside home where I didn't know a soul, started a new career in real estate sales, became the top selling agent in my office, went into a team partnership with my manager, bought, redesigned and rebuilt my oceanfront dream house as my own general contractor, became very active in community PD started a young onset support group-got involved with many PD organizations and attended dozens of programs, conferences, and participated in nervous clinical trials. Retired and have 4 grandchildren in 4 years that I see and babysit on my own, still live on my own, still drive, still strength train and work out 5-6 days s week, and am still lucid, clear headed and care enough about others with PD, and especially newbies to type this post on my itty bitty iPhone!!


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#107554 An open letter to a community

Posted by Quietstill on 04 January 2016 - 08:42 AM

In any community, there will always be different opinions.  In a forum such as this, there naturally is a strong line between PwPs and those without.  Yet we are a single community although with diametrically opposed points of view.  We can, and should, be open to, and learn from each other.  That is only possible if we are willing to really listen and acknowledge there may be hard truths that are uncomfortable to hear.  Yet how else can we learn and profit from different perspectives?

 

CGs and PwPs are the flip side of one coin.  If it becomes a contest between suffering and sacrifice, everyone loses.  Besides, that discussion is not only fruitless, but boring.  Having said that, what is the purpose of a forum?  To learn from each other and to have a safe place to express our experiences when life has gotten too much.  It is also a place to share the simple joys of life, and friends, and family.

 

My experiences are not a road map to anyone else's future, yet I can understand the fear my words might engender.  Another person's experiences may not come to pass in my house, yet I feel a chill and might wish to deny my fears by denying the validity of another's experience.  That is human.   So what is to be done?  Be honest, be open, and above all be kind.  Only in that way can we be a community that listens, learns, supports and strengthens its members.


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#54655 YOPD Facts

Posted by Tmj on 03 February 2013 - 11:12 AM

I grew up watching The Sound of Music - my parents must have made us watch it at least 20 times. So for those of us that know the tune, here is my rendition of the song 'favorite things'.

SIGNS OF PD

Issues with memory and slowness of recall
Losses of balance and fears that I might fall
Problems with neurons that cause me to freeze
These are a few of the signs of PD

Neuro appointments and meds by the truckload
Shaking called tremor and voices of low tone
Cramping and stiffness that causes distress
These are the things we have more or less

Issues with sleeping and expressions of face
Dealing with drooling and slowness of pace
Confusion, depression, anxiety and stress
These are some things upon us that press

When fatigue strikes
When the leg drags
When I’m feeling bad
I simply remember that I have PD,
And that there are worse things to have
  • jb49, Golden01, Beau's Mom and 11 others like this


#957 To our 'First-timers': WELCOME

Posted by MamaGull on 16 March 2007 - 12:20 PM

I always feel sad when it comes to welcoming someone to this forum, because it means that person has a loved one who has PD. You - collectively - have had your lives turned upside down, and we understand the cries of "WHY?" and "How will I deal with this?" and especially "What happened to the future???"

My husband, now 65, was diagnosed just after his 63rd birthday, and we realize now that he had been exhibiting symptoms for at least 2 yrs before that. I guess, in a way, we were lucky, because at the time of his diagnosis, my husband had just been offered a job transfer back to the Seattle area from Kansas. So we didn't have too much time to concentrate on the news; we were wrapped up in all the preparations for the move. We bought a few books about PD, found the various websites, but were not really able to absorb it all. He made the move to Washington while I stayed in Kansas to finish prepping the house to be put on the market. I found this forum in Feb. '06 and started firing questions left and right. After a bit I calmed down a little and was able to absorb all that I'd learned.

The men and women here are saints - no matter what they deal with at home, they are always ready to answer questions, offer advice/insight/experience, and most of all, to hug and support you. This group is mainly women, but there are also a number of men caring for their wives, and our guiding light is Jim K, who has Parkinson's. He shares his own experiences, gives us the opportunity to see through the window, as it were, and see how it feels inside, and his greatest gift is that he encourages us all. A rare and unique gentleman and our dear friend.

PD is a tough foe that doesn't fight fair; there is no timetable that helps you understand just where you are relative to the overall scheme of things. No two people with PD will deal with the same symptoms, much less in the same order, nor will their meds 'cocktail' be the same as the next person. This is why it is very frequently referred to as a 'designer disease'. One size does NOT fit all.

Ask any question that comes to mind - there is no such thing as a taboo subject. No matter what your problem, someone here has already dealt with the same thing, or something very very similar. We are our own community.

Before I close out, I thought it would be wise to share some of our shortcuts (you know, the secret handshake?!!?). We use some 'shorthand' - definitions follow. If I forget anything, I know that members of the forum will fill in the blanks...

PD - Parkinson's Disease

PWP - Person With Parkinson's (also known as "Parkie")

CG - Caregiver

DH - Dear Husband ... DW - Dear Wife

MIL/FIL/DIL/SIL - Mother/Father/Daughter/Son-in-Law etc...

MDS – Motion Disorder Specialist (a Neurologist who has done
additional work and specializes in illnesses of this sort).

DBS – Deep Brain Stimulation – a surgery in which electrodes are implanted in the brain to reduce the symptoms of PD. We have more than a few here whose PWP’s have had this procedure done, and can advise, share wisdom and experience. For additional information on this, check out the “Ask the Dr” or the "Ask the Surgeon" forums, as there are numerous threads on this subject.

Each of us here is in a different place on the PD roadway - many have PWP's that are still in early stage, others are in all of the various later stages, and a few have lost their PWP's but remain here to help. Member's backgrounds are very diverse, but there are more than a few who have medical backgrounds and are particularly helpful. We are spread all over the globe, with members in a number of countries beyond the North American shores. PD inevitably infiltrates our entire life, so in addition to specific PD issues, we share what is going on in our lives. In this forum you will find many others who know how hard it is to be a caregiver, and understand. You will quickly find that you are not alone, and that there are people out there that can not only relate, but help! Finally, we share some humor as well, for 'phunnies' are great medicine, and as often as not, the only thing we will find to laugh about in any given day.

Welcome to the warmest and most nurturing support group you could ever hope to find.

Hugs, Sharon
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#54809 What I Hate About PD

Posted by DANCER on 10 February 2013 - 08:24 PM

I hate being embarrassed in public because I have trouble with things like paying at the store for items. I feel so slow and wish people knew why - instead I feel like I am holding up the line...very frustrating. Takes me forever to do such small things.
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#54808 What I Hate About PD

Posted by christie on 10 February 2013 - 08:02 PM

What i hate most about PD...
-the unrelentless progression of symptoms. the thought that no matter what i do i will get worse with time.
-my fear of dementia
-my fear i won't be able to take care of my child-if i ever have one
-my anger for people-families not necessarily excluded- who don't care to understand the severity of young onset parkinson's and its effect on our lives.
-taking more meds than any human body can/should tolerate. having to take meds for side effects caused by other meds and not by the disease itself.
-having to choose-eventually- between immobility and dyskinesia. great options...
-the obligation to feel thankful for all the above because i "won't die of PD".
  • Jenette, Luthersfaith, roy g and 10 others like this


#110508 Latest checkup and job news

Posted by stump on 27 March 2016 - 09:37 PM

Doc says things are going really well.  I was anticipating her pushing an agonist again, but was a little surprised she never brought it up.  I didn't remind her ;).  Only change in meds was she said if I needed to I could add half a tab of C/L in the late afternoon/evening since I've reduced my mid-day dose to 1 tab to try and combat daytime sleepiness (seems to be helping).  I don't think I will take her up on that most days.  There have been occasional days, like maybe a couple times a month, where I could see that being helpful.

 

I did get the reason for her listing gait disturbances and swallowing problems.  That was just to get the baseline PT, ST, and OT evaluations through.  I guess they can't just say they want a baseline so they can better monitor a progressive degenerative disease.  Dumb, but there you go.

 

On the job front I have a likely promotion coming.  Details are still fuzzy, and will depend on some musical chairs at higher levels completing in the next week.  But they're looking creating a position specifically for me that will be a 2 year rotational assignment that I think will in many ways be right up my alley, followed another 2 year rotation through the internal audit group.  I should get a lot more details in the next few weeks.  Hopefully that will include a salary increase and not just a responsibility and workload increase.  I had been hoping to go straight into the audit group as that is basically a management training ground, but the intermediate step may well be a net benefit in the end.  Downside is I'll have to move.  Upside to the move is I'll be a lot closer to my MDS (currently 1.5-2 hours depending on traffic, after the move 12-20 minutes from the office).  Start date isn't set yet but will likely be sometime in the summer since I need to graduate with my MBA before making that move, and that is in 76 days.  Not that I'm counting or anything.


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#63259 IT COULD BE WORSE

Posted by metfan31 on 23 November 2013 - 10:38 AM

Those were the exact words my PD specialist consoled me with when after diagnosing me I held my breath for 5 minutes then broke down and cried. I wanted to scream- "yeah, well it could be better!". The I remembered it wasn't her fault and I started thinking off all the things that were worse- hence my new topic. Strangely it makes me remember " attitude and gratitude". So feel free to add to the list. Puts things into perspective don't you think ( adn no I still think having PD sucks)

 

My list starts with cancer- it has taken half my family and one very dear friend.

ALS

Alzheimer's

Huntington's

Being in the WTC on 911

Flesh eating bacteria

Losing  a child

Watching someone else you love go through any of the above

 

( I am only getting started)...................................................................

 

 

Annikin,

 

The truth is it could always be worse, and I appreciate your perspective.

In 2008 my wife was pregnant with our 3rd child, during a routine ultra-sound they thought they saw extra fluid on the brain. They then ordered a level 2 ultra-sound, about 5 mins in the tech said they did not see any fluid on the brain.  I was said "great lets go," but they had to complete all the measurements.  Another five mins in the tech stopped talking or making eye contact.  When she left the room she told us to hang on while she had the Doctor review the ultrasound.  That was the day my little angel was diagnosed with Hypo-plastic Left Heart Syndrome  (HLHS).  He was born in late Sept that year and immediately put into a medically induced coma.  Within a week he had his first open heart surgery, and then spent the first six months of his life in the hospital.  With two older kids at home my wife and I had to split time between the hospital 2 hrs away and home until the the Ronald McDonald House opened in mid Dec. We got him home in March of 2009 and he stay out of the hospital for over a year (except a week visit to have a G-tube inserted). The Summer of 2010 was the happiest my family had been ever, our angel was doing well and we were all home.  That was when his cardiologist told us it was time to consider the third (and hopefully final) open heart surgery required to manage his condition.  Leading up to the surgery he was the happiest baby people knew and had a great 2nd birthday party (which double as a fund raiser for the upcoming surgery).

In Oct 2010 he came out of the OR extubated (no breathing tube needed) and looking good except a little groggy.  With encouragement from the staff we left to get some food (hadn't eaten or left all day).  We were away maybe an hour before we got a phone call that things were not going well and we should head back.  That night he was put on ECMO (heart lung machine) and put in a coma.  A little over a month later after a few tries to get off ECMO and more surgeries he could not fight any longer and passed away in my wife's and my arms.  I think back on that night when the world seems unfair and remind myself that yeah it is, and it can only be worse.  If not for my other two kids at home I don't think I would have ever gotten out of bed again, but they needed to be feed and cared for.  In Dec 2011 my wife gave birth to our 4th child a perfectly healthy baby boy. Whenever I look at him I see his brother and that makes me smile.  All through my Dx struggles this past year I had to go to Doctors offices and hospitals by myself but I always knew I was not alone.  As hard as dealing with PD is, losing a child was worse, but having both happen, somehow makes me stronger.  If any of that makes sense...

Life can hit you hard sometimes especially when you fool yourself into believing things are going good and the worst is over.  I don't like telling this story to people how don't know me, because losing a child is like being Dxd with a horrible disease, people don't treat you the same when they know you are broken.  The truth is I'm still a person and still have the same dreams and challenges everyone else does.  Losing a child did not make me immune from getting something like PD but it did teach me how to handle it.  Head on, and openly.

 

boys-in-hospital-bed-300x225.jpg

 

Little James 9/29/2008 - 11/30/2010

 

sorry if my share ruined anyone's day here, I just can't help thinking about my angel this time of year.  If you would like to read more details about his story there is a website: http://littlejameshealthcarefund.com/  please do NOT try to donate, his medical bills have been paid, we keep the page open to keep his story out there.

 

For love of my son

 

Richard


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#114327 Alaska Vacation w/ PD

Posted by musicman on 10 July 2016 - 07:43 AM

As a fellow PD sufferer, I thought I would discuss my latest vacation experience relative to this disease...bearing in mind that I've only been diagnosed for 2 years but probably had issues for years before it became "official".

 

My wife and I flew to Alaska from Florida 12 days ago, from Tampa to Atlanta, then non-stop 9 hours to Anchorage. I really was expecting to have some issues on that 9 hour flight (super stiffness or cramping), but had nothing. Jumped up off the plane ride, grabbed our bags, and met up with the tour group and headed to the 1st hotel. (sat next to a cute little 19 year old girl and talked with her for hours, which helped pass the time:))

 

We did a land tour/  cruise combo.....3 days of trains and tour buses and different hotels every night, then finish with a 7 day cruise from Seward to Vancouver. For what it's worth, I would NOT do that combo with the land tour ever again.....pain in the butt. Too much rushing around, and way too many time schedules. That said, I had NO bad PD issues at all. We would ride for hours, then stop and get out and hike around to various spots. I was a tiny bit stiff at certain times, but nothing different than normal.

 

The cruise itself was wonderful and relaxing....never even rained! I ate like crazy, stayed up late (keep in mind we were 4 hours behind Florida time already!), danced and drank, used the stairs half the time to travel between decks. At stops, we would get off the ship and do a LOT of walking or hiking. We also did a 3 hour whale watching tour on a small boat, and I had no issues with that either.  We did a 2 1/2 hour slow hike thru the northern rain forest, and I had no problems.

 

However, the very last night of the cruise, while sitting in the private dining room with friends, my left hamstring just suddenly seized up for no reason, and I jumped up from the table and grabbed it....it was excruciatingly painful, but fortunately only lasted a minute. But for the whole night and next day my hamstring was right on the edge of repeating it's cramping. The bad thing was that we were going to be leaving to return to Florida the next day, with that same long plane ride. I had visions of that same hamstring cramping up repeatedly throughout the trip, but fortunately it never did, and we returned home issue free to a very happy little doggie.

 

So, bottom line, I envisioned way more PD issues than ever actually occurred. In fact, it was no worse, and maybe BETTER, than what I experience here at home. My advice to anyone in a similar level as myself, is to get out there and have fun. You will probably be just fine, you will have fun, and you'll probably forget about your PD for awhile. I tend to plan for the worse, and hope for the best.....and in this case, the best came true.

 


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#102230 What Stage are You?

Posted by christie on 27 September 2015 - 08:14 AM

PD staging: not as important as we -may- think...
 
http://www.youngpark...es/stages-of-pd

Staging is Not Important in Evaluating Parkinson’s Disease

By Joseph H Friedman, MD



"Patients often ask what stage of PD that they are in. I then explain the following as to why that is not an important issue...The first problem with the H-Y staging is that it is based purely on mobility and takes no account of mental, behavioral or other non-motor problems. Since every study on health-related quality of life demonstrates that the most important determinants of quality of life in PD patients are non-motor, behavioral problems such as dementia, depression, fatigue, and sleep disorders, it may be irrelevant if the motor symptoms are mild but the patient is depressed and demented. His disease has severely altered his life, yet he may have stage 1.0, or seemingly mild disease.

The second problem has to do with the impact of the motor symptoms. A person may have stage 1.0, the lowest possible stage, with a small amount of tremor, a little slowness and reduced arm swing, but look and work normally; or the PD may be very severe on the one side so that one arm is almost useless but the other side is normal. If the affected side is non-dominant, for example the left side is affected in a right-handed person, the disease is annoying but may not interfere with work. The same stage, 1.0, affecting the right side may be completely debilitating. Yet, they are both stage 1.0

Unlike staging for cancer, higher stages may be less severe than lower stages. For example, a person who has minimal motor dysfunction but has it on both sides has stage 2.0, which might be far less severe than someone who has severe motor problems on only the dominant side. Similarly, someone with stage 3, meaning there is a balance problem, may have very mild motor dysfunction and have less
impairment than someone with stage 1.0.

......................

Severity of PD is currently not really measurable. We rate different aspects of PD differently and often use multiple different scales. It affects people in so many different ways that it defies methods for comparison, just as it has been impossible so far to measure what we mean when we say disease progression. We have good methods for measuring the motor symptoms of PD. We add points for tremor, stiffness, slowness, posture, walking, etc. and come up with a number, and that is how we currently test new treatments for PD....The H-Y scale is useful for looking at populations of PD patients but is not useful for assessing a single person. It helps us understand how various treatments alter the progression of motor problems in large groups.

 

The severity of your own PD is really a matter of how severely it affects your life. A number can never capture this".


Dr. Friedman is a clinical professor, Department of Clinical Neurosciences, Brown University School of Medicine, Providence, R.I., and medical director of APDA’s Rhode Island Information & Referral Center in Warwick.


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#85363 Broken Heart

Posted by action_guy on 06 January 2015 - 02:48 PM

Roadrunner, I was a caregiver for my late wife and now a PWP, so I know both sides of the coin. Some things that helped me and may help you. My apologies if you have heard this before.

 

  1. Get counseling. Seeing someone every few weeks to vent is a great help.
  2. Get screened for depression. 
  3. Get help to take care of your husband so you can take a break.
  4. Exercise daily.
  5. Give up on perfection in housekeeping, lawn care etc...
  6. Call your friends/family and ASK for help. Be specific. Cook a meal, run errands for example.
  7. Make sure your husband is getting the right treatment.
  8. Cherish the small things. The hour or so after I put my wife to bed and before I went to bed was the high point of the day.

But nothing is every going to make it easy, just do the best you can. Taking care of my wife was both the hardest and best thing that I have done.


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#76326 Diagnosed 1 month ago

Posted by AB-Normal on 12 September 2014 - 03:27 AM

Cheryl;

Well greetings, welcome to the club. Allow me to introduce myself, I'm Michael, and I've been dealing with PD for about 23 years and counting. Although I've only been taking meds for it for just over a year now. One of the good aspects of YOPD (young onset Parkinson's Disease) is a slow progression. I can sure understand your feeling of being overwhelmed, emotional, and with a thousand questions running through your head. First off let me tell you, that dear, is absolutely normal........ We've all gone through that. Let's face it, you've just had a life altering Dx. dropped in your lap. Time to slow down and just breath...... take a deep breath and slow down...... You are the very same person you were before your Dx., and the same person that you will be next week......... Nothing has changed, except that now, you have a label for those insidious problems you've been having, and a way to treat them.

 

You mention that minute you're feeling fine and the next you're nauseous, dizzy and just want to lie down. I'm willing to bet (please correct me if I'm wrong please) that you feel this way shortly after you take your Sinemet, and the dizziness happens when you stand up from sitting. These are both side effects of the Sinemet, and should get better over time, as your body adjusts to it.

 

As to feeling like PD has taken over your life and thoughts? That is also quite normal. Parkinson's is fresh and new to you, and it's natural to want to learn everything you can about it, while at the same time, the future scares the holy hell out of you. Well, this is a great place to ask questions, learn, vent frustrations, laugh, cry, etc....

 

I like to refer to our little corner of the web as a great brain trust of knowledge about PD. You'll find folks here from all walks of life and ages, and from a whole range of experience with PD. From newly Dx.'d like yourself, to folks that have had PD for decades. We have our own Pharmacist with PD, as well as our very own Dr. who has PD(who's opinion I respect immensely)  We can be serious, we can be quite silly, but we're always ready to help.  If you have a question, ASK, doesn't matter how minor or how serious, or how silly. Doesn't even matter if it's been ask a hundred times before, ask it anyway. Remember, there is no topic, that is taboo

 

So please, jump in, join in, and above all? Come have fun..........

 

Tell us about yourself. Who is Cheryl? How old are you? Where are you from? When did you first start having symptoms of Parkinson's? What symptoms do you currently experience? Do you work? I know you mentioned taking Sinemet, how much? and how often? It's information like this that can help us, help you, and helping each other? is something we tend to hold dear..........

 

We are each on a different place along the path we call Parkinson's. From early to late stage. We are diverse, and come from all over the world, but here? you will NEVER be alone.

 

Before I forget, here is a list of the most common shorthand definitions we tend to use:

PD - Parkinson's Disease

PWP - Person With Parkinson's (also known as a "Parkie")

CG - Caregiver

DH - Dear Husband 

DW - Dear Wife

DD- Dear Daughter

DS- Dear Son

MDS – Movement Disorder Specialist (a Neurologist who has done additional work and specializes in illnesses of this sort).

DBS – Deep Brain Stimulation – a surgery in which electrodes are implanted in the brain to reduce the symptoms of PD. (We have more than a few folks here that have had this done <or their spouses have> and most are more than willing to share their experiences)

 

I can't believe I've gotten this wordy..... dang, people are going to think that I can actually write.......You'll probably fall asleep just reading this......

 

Oh, before I hit the "Post" button....... I have to say, that if you hang around here? You'll probably make some friends, some close ones as well............. Hey! just saying.... you have been warned........

 

So, let me give you a {{hug}} and welcome you home..............................kick back, relax, there's cookies in the kitchen.... and drinks in the fridge.........


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#58449 What I Hate About PD

Posted by SweetCndnMaple on 01 July 2013 - 02:16 AM

thank you for creating this post. I never get to talk about what I HATE about PD. I keep the brave face on. Everyone around me wants to talk about adjusting, accepting, accommodating, keeping positive, etc. Which is fine, except its not the whole picture, you know? So is it ok if I tell you?

- I hate that I cant write, cant take notes, cant read my own grocery list
- I hate that I cant lay still when I go to bed, and my legs ache
- I hate that I cant get down on the floor to play lego with my nephew
- I hate that my niece told her Mom - "I don't like when Aunty's hands shake, I'm scared"
- I hate that I had to give up all my high heels, which were kind of a signature
- I hate that my adult daughter, who is just beginning her own life, career,etc is quietly adjusting her plans to include caring for me in the future
- I hate that my employer keeps asking what they can do to accommodate me, and I don't know what to tell them, because nothing helps, and I can tell the end of work is coming
- I hate that if I have to stop working, my LTD benefit isn't enough to cover my expenses, and I am too young to collect my pension
- I hate that I do not have a partner, someone to be by my side through this, and that never really bothered me before
- I hate that I am scared and sometimes I cry in front of people, who think I am strong
- I hate, hate, hate, hate, hate, hate not knowing how fast PD will progress, and what will happen to me in the future

Oh wow, thank you, that felt pretty good! I will now return to my regular programmming.
  • OneWingedVictory, Golden01, Beau's Mom and 6 others like this


#115624 Need some feedback on this

Posted by Daven on 14 August 2016 - 08:06 AM

Bill,

I think you should follow the advice of your neurologist. It sounds like he cares and even took the time to note a symptom that he considers insignificant at this time. You need to take care in reading too much from Dr. Okun's comments. His goal is to try and answer questions without diagnosing over the Internet. Keep in mind that his answers are not only to you but to whom ever reads the response.

Let's say you had Parkinson's, what would you do different? You'd probably be monitored by your doctor until your symptoms started to effect your daily life at which point you would start taking medication. There is no pill that will slow or stop the progression of PD. Seeing a specialist is expensive. Your neurologist could have said let me follow you to see where it goes. Instead, he noted a finding and brought this to the attention of your PCP who is responsible for your overall general health.

I know it's tough when you have this sitting in the background of your mind but you need to find a way to set this aside and enjoy life. Life is too short to worry about everything. This is advice that I also struggle to follow but I try every day. I hope you can find a way to find some peace.

Do something special for yourself today.

Cheers.

Dave
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#115200 Why is it personal?

Posted by New normal on 02 August 2016 - 12:53 PM

I started a new thread...primarily to connect with posters I knew 3 years ago and share with them our progress and to have a PLACE for PWP to come out of their closets and share their UNIQUE experiences.

This is the second tme I'm personally attacked for describing my condition implying I am self absorbed and a hypochondriac. How presumptious of anyone to judge me based solely on my posts. Unless someone has ridden a motorcycle for over 50 years they cannot judge the situation from their life experience. The same with one's medical status.

The comments diminishing the new thread are not short of the bullying that is often displayed here. If someone dares to discuss topics not in the confines of stage 1 or 2 they are bullied as being negative.

Why does anyone take time to discount an effort to expand the topic range by insulting, judging, or blasting the originator.

Are we nervous that reality just might creep in ? That someone just MIGHT realize Michael J Fox And Muhammed Ali are NOT THE TRUE IMAGE of PD? Do we wonder why other neurological diseases receive more grants and subsidies because PWP hide beneath blankets of positive thinking and optimism?

What area of science has EVER made advances beneath the sunny skies of denial? What service to PWP is provided by disquising the truth?

If someone dislikes or finds no value in a thread...OR.... has judgements and opinion of the originator addres them on PM's or better yet ignore the book on the shelf. This fourm should be a library of diverse thoughts...not a olace of personal exchanges directed NEGATIVELY.

I am offended by someone placing judgement on me...but sorely more offended by anyone discouraging an opportunity to expand the discussion of PD.

From the CG forum and from MANY posts it is obvious that preemptive measures could avoid a lot of heart ache.

People who always dance in the sunshine are certainly not decisive leaders when it floods.

Please make any more comments here...rather than spoil the efforts to have one thread not riddled by personal opinions. Education, awareness, preparedness, comfort, patience and tolerance...nice words.


NN
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#88496 I got mad... over sinemet

Posted by geminik88 on 20 February 2015 - 12:12 PM

I work in a very busy hospital.
I also work the 7pm- 7am shift. It's normal for our floor to get 5-7 admissions to our floor at all times of night. When they come we typically collect a list of there home medications and place them in the computer so they can receive them while there here. We have a policy that patients ts cannot keep there medication from home with them, for safety reasons.

I was the charge nurse on my floor the other night, and one of the nurses came up to me and said that they admitted a patient and put all their home medications in the computer, but that there were some that weren't in our machine. We can't possibly stock everything in our machine, and the pharmacy in the hospital closes from 10pm-6am. So I told the nurse to call the hospital supervisor, "nancy", to go use her key and get the medications from the pharmacy stock room since it was 1 am and she is the only one with access.

About 20 minutes later, the nurse came up to me and said "nancy told me she has some paperwork to do,and can't get to it. she said I'll just have to wait until 6 when pharmacy gets here in the morning" I asked for the nurse to hand me the list of medications. Pepcid, simvistatin, and then I saw Sinemet. I don't know what hit me, but I got mad. Picturing the patient, who had probably been in the ER for 6 hours, finally getting a room at 1 am, told to send all his pills home with his wife, who finally can go home and rest, to just be told "sorry, it'll be another 5 hours until you can get your medication". I called "nancy" and had a few choice words. Including "how would you feel, waking up stiff as a board, unable to hold a cup to your mouth? Just because someone wouldn't spend 15 minutes of their time to find a pill for you?"

Id like to think I'm always a patient advocate, but before reading all your posts, I probably wouldn't have pushed it as far as I did. So thank you guys. Now let's see what kind of nasty-gram I get for back-talking my superior. Haha, that's okay, the patient got his Sinemet right on time :-)
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#73597 POSITIVE FEELINGS TO SHARE!

Posted by Drummergirl on 11 August 2014 - 11:55 AM

Hi Friends,
I thought I would share my story in hopes it will provide some good news and hope to YOPD, Caregivers and anyone who is interested.
I must warn you, it's long.....

I saw a new MDS as my previous was too busy...... I live 10 minutes from Dartmouth Hitchcock Hosp. in Hanover NH. She moved here from the Cleveland PD Clinic.

Wow! very easy to talk to.... she is a DO with mds specialty.

Right away I could tell she had more PD experience then my other mds.

We went over my history, meds etc. She was shocked I was dx almost twenty years ago, (I'm almost 54, MJ Fox and I were dx around the same time) she was surprised I had been on l/ dopa this long.
We discussed my dosages and how much time between doses.

Which is 25/100, sinemet 1/2 pill every 2 1/2 hours.
Azilect 0.5 mg 1x a day am
Clonazepam .05 at bedtime
Comtan 200 mg 3x a day. the only side effect from this is dark urine.

We talked about levodopa and protein, the usual dietary issues with PD.
I am a grazer, eat throughout the day, taking in a little protein at each graze. I do eat a little more when I sit down with family, but still do not eat a big meal.
I exercise, mostly strength training. I shared my concern of inability to gain weight or muscle. She said most pwp continue to lose weight. Encouraged me to keep exercising just the same.

I shared with her I also was on eldepryl for the first 7 years, ( it was new at the time and was thought to slow the progression) She commented it looks as though it worked...why did you stop? Because my former nuero thought its benefit would have been met and saw no reason to continue.
I also shared my only symptom to that point, first 7 years, had been right foot tremor.
When I was abruptly removed from the Elderpryl leg tremors began on both sides, but I still responded to a slight increase of l/ dopa.

She did a neuro exam and she said your doing so so well, no rigidity present, finger & hand movement is good. Surprised here, since I drop things in the am.
She said I should be very thankful for such slow progression......
" You could be the poster child for Pd" " This is what we want for all pwp." And best of all, she thinks my progression will remain minimal!! keeping my fingers crossed here....

I TRULY AM THANKFUL AND WISH IT WAS THIS WAY FOR ALL!

She asked if I fall, I have not. Balance is an issue when I have dyskinesia.
Passed the smell test 6 months ago.
My writing is more in line with dystonia, writers cramp, I do not write real small, like pwp for whatever thats worth.

She then looked at my recent MRI and concurred with former mds, nothing abnormal, " it was a brain of a teenager"..... Hmm, not sure thats so good.lol!
No abnormalities and I have Pd???

She was unable to retreive my da t scan to view herself. It was read by former mds as abnormal with decreased uptake of dopamine. I will have former mds send it to her to view.

We did not change any meds. I have been concerned about the clonazepam I take at night, becoming addicted, it is suppose to help with leg tremors, lasting longer then lorazepam. She clearly said the dose was too small for addiction and no need for concern.

We did discuss the dystonia that I think I am experiencing in my calfs. We ordered a nerve conduction to rule out pinched nerve or nerves. If it is dystonia, then she will prescribe baclafon.

Sleeping is an issue for me, I can get to sleep, but I can't stay asleep more than 4 hours, I will try adding 6mg of melatonin.
When she walked out with me, she said my walking was really good and I should be very happy with where I am.
Again, not tooting my horn but it was nice to hear this from someone who has been around hundreds of PD patients.

I do have some of the annoying pd symptoms, like fluctuating temp, days when meds are up and down. Fatigue, sometimes I have brain fog and anxiety about meds wearing off.

I AM NOT TOOTING MY HORN HERE, just want to share some good news and that having PD does not mean a CRAP FEST life for all. I wish everyone had a mild form with slow progression as I have had...

Cheers!

Karen
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#56426 Facts on PD treatment

Posted by christie on 05 April 2013 - 06:28 AM

Facts on drug treatment for Parkinson's disease
(topic open for debate-discussion)

Fact number 1: Patients with young onset disease are prone to developing early and severe dyskinesias and motor fluctuations induced by chronic treatment with levodopa.
Fact number 2: Levodopa remains the most effective and better tolerated drug for Parkinson's treatment. It's the only drug with proved efficacy in prolonging our life expectancy and significantly improving our quality of life (QOL)
Fact number 3: Many neurologists are hesitant to prescribe levodopa-especially early in the disease and to patients with YOPD- or try keeping the dose of levodopa as low as possible for as long as possible in order to avoid the emergence of dyskinesias and motor fluctuations.
Fact number 4: Dopamine agonists represent the most effective alternative to levodopa, either as monotherapy in early disease, or as an adjunct to levodopa allowing for administration of lower overall doses of levodopa
Fact number 5: Monotherapy with dopamine agonists seems to be the preferred initial treatment for patients under 60 years of age. The main reason for this is "levodopa phobia".
Fact number 6: Dopamine agonists, especially when given at high doses, may cause severe side effects, including not only the temporary symptoms of nausea, vomiting and postural hypotension but, most importantly, behavioral disorders (impulse control disorders, hallucinations...)
Fact number 7: Patients started on dopamine agonists (instead of levodopa) have a significantly lower incidence of MILD TO MODERATE NON DISABLING motor complications (as compared to patients started on levodopa). However, the duration of this benefit is only temporary, and does not seem to exceed the first 5 years of treatment. There appears to be no significant long-term advantage to starting treatment with a dopamine agonist as regards the development of SEVERE AND DISABLING dyskinesias
Fact number 8: Parkinson's is a chronic degenerative incurable disease. The initial choice of treatment-levodopa or dopamine agonists-has little-if any-effect on long-term prognosis. As Weiner and Reich commented on this: "Agonist or levodopa for Parkinson's disease? Ultimately it doesn't matter, neither is good enough"
http://www.ncbi.nlm....pubmed/18695156


Patients with PD should be active partners in disease management. Fully informed in order to make informed decisions and critical choices, depending on their particular needs.There's no "one-size-fits-all" treatment.

Let's keep updating this topic with evidence-based data on PD treatment, to help us all make the right decisions on our treatment.
  • Rogerstar1, woodbee, OneWingedVictory and 5 others like this


#101563 Losing sense of smell as a red flag for dementia

Posted by TexasTom on 14 September 2015 - 03:53 PM

I have a lot of questions on that study.   If the age group was 85... and retested when 88, and signs of dementia are noted... what about the control group who was 85 and retested when 88.   When I see the title like that, put it into the "Let's scare the hell of people to donate to fund our research"

 

A famous one is a well know high tech person who's mother has PD.  When he got his DNA test results it shows a 2x more likely, than general population to have PD.   As we know PD affects 1 in 1000.  If you are genetically DNA positive you are twice as likely as the general population to get PD.  That means 1 in 500.   So what did the article say... he had a 50% chance of getting PD due to his Mother having PD!  Admitted he is funding a lot of great research.... but really!

 

I lost my sense of smell a long time ago.  Stuff like stepping in dog poop.... my dogs would alert me with "really".  I stepped one foot into the house, everyone was "what is that smell?".  I was oblivious. I don't remember when it occurred, but new house and new carpet in 1993.. I tracked in dog poop.  :(

 

Do I have Dementia... nope. Do I have cognitive issues? Yes.  Did adding vitamin D to my daily pills help.... yes.   Does the amount of sleep make a difference. YES! Three hours of sleep... fog city.  Rare days when I have gotten more than six hours makes a huge difference.

 

Deep breath everyone.... a 2015 study showed why the 2012 study had errors.   Different test methods, patients "on vs off", and lot of uncontrolled variables.  Keep in mind medical studies used to take years, but as we have seen a "publish or perish" for funding many studies are very incomplete nor address issues.    This is why it is critical we do support folks like the National Parkinson Foundation and Michael J Fox Foundation.

 

Good thing about curiosity is it helps alleviate some PD symptoms.  Hence every time I ready a study, off I go on my curiosity tangent to see what might be true/false/statistics.  

 

So rest assured if you have lost your sense of smell, it does not mean you will have dementia in three years.


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