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MamaGull

To our 'First-timers': WELCOME

157 posts in this topic

While standing in a hospital room waiting for my wife to be discharged, after having gone through her second angiogram in less than a month, I learned that my father has Parkinsons. It can almost feel a bit overwhelming. It is nice (but also sad) to know that there are others out there. who have had that feeling and are making it through

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Thank you for your welcome. I am the caregiver for my 77 y/o aunt with PD. I'm trying to learn everything I can to give her the best care possible. At this time she requires constant supervision. She can accomplish simple tasks ( eating, tolieting, etc.) with verbal instructions. Any advice is greatly appreciated. Hope to hear from you soon.

Susie

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My mom has had Pd for over 5 yrs now and for the last 2 she believes my dad is having an affair. She has escalated into total obsession with it and has been told by neurologist that it happens with parkies. Of course she is adamant it is true. My parents are both in their mid-seventies. My Dad has his own health problems. The problem is my dad takes her very personal when she has a day when she is very mad at him for having an affair and fights back with her, he says its' the disease but can't handle the verbal assaults. As kids we have tried to separate them but neither will leave their home and live with us. These episodes seem to occur once a week and are very stressful on them both. Any answers

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Hello. Your welcome gave my soul some peace. I am 54 and my husband 74 was just diganosed. After reading some of the things on this site I realize this has been coming. He doesn't have the temors, but his legs are week, he has fallen a few times. I look forward to getting more informed so I know what I can do to help my husband. Having noticed many people found out at a much younger age I feel blessed to have had so much time with him. I want to make his life as full as can be.

 

Catherine H

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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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my mom is 71 and has been diagnosed with Parkinson's about 8 years ago. My Dad died suddenly 1 1/2 years ago and my mom's Parkinson's progressed at a rapid state. My one sister lives very far away and my other sister and I live very close. WE have a care giver most of the time but the other times my sister and I split the times.

When I stay over night with my mom is it so exhausting and so sad. I get to come home and sleep and she is trapped in a body that won't work for her.

WE layed on her bed as she suffered from restless legs and insomnia and we cried.

I wish there was end to this horrid nightmare my mom is living

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my mom is 71 and has been diagnosed with Parkinson's about 8 years ago. My Dad died suddenly 1 1/2 years ago and my mom's Parkinson's progressed at a rapid state. My one sister lives very far away and my other sister and I live very close. WE have a care giver most of the time but the other times my sister and I split the times.

When I stay over night with my mom is it so exhausting and so sad. I get to come home and sleep and she is trapped in a body that won't work for her.

WE layed on her bed as she suffered from restless legs and insomnia and we cried.

I wish there was end to this horrid nightmare my mom is living

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My husband has PD, we think. He won't go to a doctor, instead he relys on naturopaths, physical therapy, massage and OTC herbs and minerals. I'm not sure if any of that works, but it's his body and I go along with what he wants.

 

I am his only care giver, and even though he is still pretty good, camparitively, it is frustrating for me. I want to be here because he needs help walking, can't carry food or anything, and can't even put his shoes on without help. Because I never know when he'll need help, I no longer have outside activities or friends. I love my husband (we've been married 46 years) but I feel that I'm losing life, just as he is losing mobility. How do we deal with this care giver resentment?

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Thanks so much for your welcome, your sympathy and encouragement. My DH has PD, I think. He has never been diagnosed, but has had all the symptoms for 11 years now. He is treating it on his own with physical therapy, a Naturopath, and massage as well as other herbs and minerals.

 

I love my husband, and with all the caregiving, I'm trying to find myself! Is there a way to get over the feeling that I'm giving up my life? Or am I just being really selfish? How do I balance this when he refuses any outside care or treatment?

2 people like this

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Thanks for the welcome....is was very well written. My DW was diagnosed with PD about a month ago. She

is 51 years old. After a year of wondering what was causing some of the symptoms. we now know.

Now we are reading, and reading, and reading....all we can find about PD.

 

Most interesting thing I have read is that, every case if different.

 

Jeff

Edited by Jeff J

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Hi!

 

First off, I want to apologize for posting here. I feel like a hacker right now. I know this is for caregivers, but I just have to say something.

I ventured over here today and read these posts by all of you Heroes. I have been so focused on myself(dare I blame Requip) that I haven't taken enough time until the past few days to consider the Caregivers of PWP like I should.

Please don't respond to this. Just read and go on supporting each other.

 

I just want to say after reading the stories on this thread, my chest got tight and my breath caught in my throat as I contemplated what you all are going through. I'm over 8 years into PD and the progression is scary. But, I'm determined to stay as well as I can and after reading about you all, I'm going to work harder to try and slow down this PD and improve my health.

I'm thinking how unfair this is to my husband, my parents and other dearly loved family members who care for me and who take care of me. Will my husband eventually be miserable and will he feel trapped? I want to say 'no' because he loves me more than I deserve. I don't want to be a burden to him and I don't want to disappoint him. He is so kind-hearted and giving.

I'm not looking for any of you to answer these questions. They are what I ask myself and God.

 

I just want to say 'thank you' for what you have done, are doing now, and will do in the future as caregivers to that person you love so much with PD. Don't forget to take care of yourselves and take a much deserved break as often as possible.

 

My prayers and best wishes to you all!

Tonya

 

 

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Well, we just did a 2nd opinion on the wife's diagnosis. This was done mainly to put her

mind at ease. The diagnosis was the same....but she really felt more comfortable with

the new Doctor and we are switching to him as her Neurologist.

 

I have noticed that her outlook on things has improved...guess it's cause she is giving

into the fact that she has PD. I told her last evening that I noticed she is smiling more

and more....and her moods are back to what they used to be.

 

We are talking more about the PD....and she even read a book on the subject.

Guess it also helps that the meds are helping with the symptoms.

 

Jeff J

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Hello, I am a newbie to the forum as my DH was diagnosed with Parkinsonisms earlier this fall. He is 53 years young. Presently, my mother-in-law is living with us and is in the last stages of congestive heart failure. I am working second shift at our local hospital (2:30 - 11:00 p.m) so that I can care for her during the day. My husband is an elementary school guidance counselor and helps me to care for his mother in the evening hours.

 

Today, my DH had his 4 month follow-up where the doctor stated that the odds are not good. In the last 4 months, his rigidity and tremors have increased. He grinds his teeth and snores while sleeping. He was diagnosed with sleep apnea and uses a CPAP machine. His gait is cumbersome and his biggest obstacle is DEPRESSION.

 

My question is this - can someone give me their thoughts on the different medications? We are on Carbidopa/

Levodopa, but this doesn't seem to be working. Today the doctor prescribed Requip® XL to be taken with the Carbidopa/Levodopa. The doctor also started him on Effexor for depression.

 

Any help will be greatly appreciated.

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Hello, I am a newbie to the forum as my DH was diagnosed with Parkinsonisms earlier this fall. He is 53 years young. Presently, my mother-in-law is living with us and is in the last stages of congestive heart failure. I am working second shift at our local hospital (2:30 - 11:00 p.m) so that I can care for her during the day. My husband is an elementary school guidance counselor and helps me to care for his mother in the evening hours.

 

Today, my DH had his 4 month follow-up where the doctor stated that the odds are not good. In the last 4 months, his rigidity and tremors have increased. He grinds his teeth and snores while sleeping. He was diagnosed with sleep apnea and uses a CPAP machine. His gait is cumbersome and his biggest obstacle is DEPRESSION.

 

My question is this - can someone give me their thoughts on the different medications? We are on Carbidopa/

Levodopa, but this doesn't seem to be working. Today the doctor prescribed Requip® XL to be taken with the Carbidopa/Levodopa. The doctor also started him on Effexor for depression.

 

Any help will be greatly appreciated.

 

I have been taken care of my mom for Parkinson for over 5 years now. Her problem started with gait, drooling and slow movement. I mean really slow that ant can move faster than her. She started with Carbidopa/Levodopa 25/100 and recently increased to 25/250. As far as I know, Carbidopa/Levodopa is good for movement related issue. Requip is better with tremors. My mom was also given Requip once per day (0.25 mg), but Requip caused dizziness/motion sickness that finally, we discontinued it 4 years ago. But started last week, due to insomnia issue, I decided to resume 0.125mg before her sleep after consulted with her doctor.

 

Be watch out for those medicine for depression. Many of those may cause insomnia, confusion and hullucinations for long term use. If you really want to use it, started with the lowest dosage possible. You may have to adjust it yourself to figure out. My doctor always encourage me to do so (like started with 1/2 instead of whole tablet.) Remember, doctor does not live with you and only you can tell which way is best, but always keep your doctor in the loop before you decide anything.

 

I also need to warn you about Carbidopa/Levodopa because I don't want you to face another problem called 'Dyskinesia' after years, because once it is formed, it is very hard to reverse back.

 

I recently created a blog, but still under revision, if you are interested, you can visit http://i-care-parkinson.blogspot.com

 

Best regards!

Edited by I Care

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Well, today is my first day on here, but we have been dealing with Parkinsons since 2001. Things are getting worse and now I am in need of emotional support by people who understand what I am going through...doesn't that sound selfish. I am not exactly where my DH/PWP stands in the stages, but I do know he recently made another turn. I hope that I can share info. of being a caregiver/spouse as well as getting help with my questions. BTW, we have a 3 yr. old (adopted) DD.

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Hi-

 

Both the welcome & the messages made tears come. I guess we all try so hard to be strong for the 'now', we forget to look at the big picture. Reading other PD people stories and problems brings it back into focus. My husband was diagnosed about 6-7 years ago. He has no arm/hand tremors, but does have walking/balance difficuties and severe Othostatic Hypotension which causes him to pass out at night if he goes to the bathroom, or sometimes daytime if he sits for a long time. He takes Sinemet, Requip for the PD & Mitadrine and Fludrocort for the Orthostic Hypotension. What does anyone know about Sinemet Extenders and/or Sinemet Enhancers? His Sinemet on time is getting shorter, and he freezes. Falling is very scary, and we don't like trips to the local ER!!

 

Thanks for any help.

 

Cookie in NY

 

 

Cookie,

 

 

My husband had, the same issue with "on" time on Sinement. His new Doc recently switched him to Stalevo 3 to 4 times a day. It is Carbidopa-Levodopa -Entacapone. He feels more on time but has cut his does to 3x a day so he can sleep.

 

hope this helps!

 

Mamabear

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Hi,

 

I'm new to this forum, struggling with remaining positive. Here is a link to my other post: http://forum.parkinson.org/index.php?/topic/11568-new-to-forum-looking-to-get-real/ Everyone here seems really positive and may not want to hear what I have to say. I understand that, I would have been the same way probably. But now I'm just looking for anyone who has had a similar experience, because I'm beyond looking for hope, I think I just need to find someone who gets it...

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Hi,

 

New here. Obviously. Sigh. I'm 43 and my husband just turned 52 on Saturday and we have two amazing boys, age 12 and 9. After 20 years with the same electronics company, I left and returned to school to study Psychology/Neuroscience and Electroneurodiagnostics. I'm graduating this semester. I threw myself into this to fully understand my babies :-)

 

My 12 yr old was diagnosed with OCD and Sensory Integration disorder at age 6, but now does remarkably well (no meds). My 9 yr old son was dx'd with benign shuddering attacks as an infant which disappeared at 17 months, as predicted. At his 3 year well check, seemingly PERFECTLY healthy (hitting and exceeding milestones), he received a HepB and Flu vaccine and within minutes, he had a seizure. The seizures remained from that point forward. He is 9 now and has had inter-ictal discharges every 5-10 seconds across his brain all along, and has been diagnosed with Epilepsy, Dyslexia and ADHD. (NOW, 4 yrs later in Jan 2011, the CDC and the FDA began a study due to increased reports of seizures following flu vaccines and preliminary results concluded that there is a small increased risk of only 10% and of those 1% will go on to develop a residual seizure disorder...probably due to predisposition, but "vaccine guidelines will be reviewed"). Ya, great...sigh

 

Last week, my husband's suspected "carpal tunnel syndrome" from playing too much Jazz guitar, turned into a failed EMG test and a referral for an MRI on 3 parts of his body/brain. We're scheduling it this week. The only "symptom" that he has had, has been a left pinkie finger that twitches and his left hand thumb sometimes "locks up". About six months ago, he sought treatment and medication for a suddenly worsening depression that he could not attribute to any life circumstance. We were stunned to hear the doctor say, "let's rule out the ugly stuff like Parkinson's disease". I'm shocked...but, not really if I think about it. I know enough about the brain to see the link between the neurological "quirks" between my babies and my husband.

 

In my "spare" time between full time work and full time college classes, I'm FIGHTING under every rock to get resources and help for my little boy and his severe dyslexia, before it further devastates his easy going temperament and can-do attitude. I earned an Epilepsy Advocate $5K scholarship due to my efforts to advocate for him, but I am bruised from all the brick walls :-(

 

Now, facing this dx with my husband of 22 years, when he is still so young, I am fighting tears every 10 minutes. I feel like I don't have one once of energy left to begin the daunting task of researching symptoms, prognosis, meds, treatments, for ANOTHER neurological disorder and yet, if I don't, I know damn sure that the doctors aren't going to hand me what we need on a silver platter. I look into my little boy's face - God, he has such dimples! - and my throat is tight and my chest aches, thinking of him struggling and clawing his way past dyslexia and epilepsy to face a future Parkinson's diagnosis. Life is surreal right now. And yet, I know that I have no right to complain - I know that some other mother heard worse news today :-(

 

I guess that I start here...asking questions, reading how others cope....Boy, I miss the days when the only "news" that came our way were wedding and baby shower invitations!

 

Thanks for listening to my vent!

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My dad was dx with pd about 6 years ago. He was originally taking carblevo. After we switched doctors his new one put him on the Sinemet Extender (carbidoba/lebadoba[not sure of spelling]). That seemed to not work so when we went back the doctor put my dad on both medications. He takes the carblevo 3x a day and the Sinemet before bed and that seems to work almost perfectly. I'm not sure how far your husband's PD is but I hope this may have helped and i wish you the best.

 

 

 

 

Hi-

 

Both the welcome & the messages made tears come. I guess we all try so hard to be strong for the 'now', we forget to look at the big picture. Reading other PD people stories and problems brings it back into focus. My husband was diagnosed about 6-7 years ago. He has no arm/hand tremors, but does have walking/balance difficuties and severe Othostatic Hypotension which causes him to pass out at night if he goes to the bathroom, or sometimes daytime if he sits for a long time. He takes Sinemet, Requip for the PD & Mitadrine and Fludrocort for the Orthostic Hypotension. What does anyone know about Sinemet Extenders and/or Sinemet Enhancers? His Sinemet on time is getting shorter, and he freezes. Falling is very scary, and we don't like trips to the local ER!!

 

Thanks for any help.

 

Cookie in NY

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Thank you for the very kind welcome.

Sorry about double posting I'm not used to forums and how they work.

 

My dad was diagnosed in 2007 with PD I was the one who had originally suspected that he had it but noone would listen to me. My dad is 71 and I'm 22. I often find it hard to deal with the PD, getting him to take his meds, and the doctors.

 

I am often a level headed person but I find that the neurologists don't care about my dad and find this most frustrating. I convinced my mom to change doctors once because of the office and how the doctor spoke to us in "doctor terms" and not in terms we could understand. Does anyone have suggestions of what to look for in a good doctor besides being comfortable? Are there specialists for PD out there that only deal with PD on a daily basis and where? I want to get the best for my dad so he wont dread the doctors and by now he has memorized the neurological exams (touch your finger to my nose etc).

 

Does anyone have any help for my mother and me to deal with taking care of my dad? We both have other health issues and sometimes taking care of my dad just gets to be too much. I am sorry if this sounds like I'm just venting out my frustration.

 

Thank you for listening,

Coungie

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Thank you Sharon.

 

I am not really that familiar with PD except in some excerpts of the books I have read, the discussions at school and some ads about the condition.

 

I sincerely hope that by reading through the threads, I will be able to understand more...

 

Again, thank you so much.

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Thank you for the Welcome.

My husband is 65 & was seen by a neurologist & diagnosed with Essential Tremors( ET). But his tremors progressed, so he saw a new neurologist in June & he queried PD as some of his symptoms were typical of PD & not ET, so he was started on ET medication, with minimal effect. In Oct he was put on anti-PD medication which still had little effect & in early Dec ( 3 weeks ago) he saw a PD specialist & he confirmed a diagnosis of both ET & PD. He has been started on a 3rd medication .

We are concerned about the future & have so many questions, but with the children home for Christmas , we will postpone any real search & decision making until the New Year.

I am a nurse so I have some knowledge about this ( but have worked in Addictions & Mental Health & not medicine for the past 30 years.)

I am very happy to be part of this forum & am thankful that I have all this support available because I know we will need it. He has been & is a wonderful friend & husband and I want to make sure that I can do everything possible to help him; but I am scared for him and our future.

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Merry Christmas Everyone

As I reflect on the past year with all the new challenges, & read what all of you are going through, I realize how blessed I am. I want time to stop!

Our futures are uncertain. With each stage of PD we will need more strength to help out loved one & I am so grateful that I can communicate with all of you privately my random thoughts & fears.

Happy Holidays everyone

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Okay so I am wondering what causes the mood swings & do all of the people with parkinsons( pwp) get this eventually? My DH is newly diagnosed & he dies not have that. What O have noticed is the tiredness - he sleeps a lot with all the meds.

Also , I am wondering about Insurance coverage ? My DH is a teacher in Maine & has a pension from his previous teaching yrs in CT. When he retires from ME. he has to decide if he should take a Health Ins from either State. Can the Insurance refuse him now that he has a LT illness? How do you all find the Health costs? We lived in Canada for awhile, as I was Canadian, so since Canada has free Medicare- for all health issues, should we move back there?

I am terrified of the financial implications. Should I be worried? If anyone knows, I would appreciate your input.

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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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