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pinkdaisy

New bee-- 45 y-o wking female with two kids SEEKING HELP

50 posts in this topic

Hi all,

 

I am a new lost bee seeking for support and any recommendations.  I am 45 y-o female.I saw my neurologist last Tues and confirmed I have showed of early stage of PD i.e. less left arm swing, stiffness fingers , slow tap of thumb and index fingers, painful  slow typing movement fingers, twisting thumb. Plus I have some  internal tremor in my left leg. I will see him again in 2 months , has ordered  MRI. Deep inside myself I knew I have all the classic signs of PD. I am feeling so lost, depressed  yet after many months of searching the information I have decided to fight this disease. I must come out  from the dark tunnel. I have two kids, a husband and parents  and  a full -time job.  I have been trying to hold my tear in  front of my 10 y-o dtr. who has attached to her mom like a glue. PLEASE  TELL ME what to do to delay the progression of PD, anything you could think of PLS. Sorry, English is my second language. I  have starting running threadmill daily, strengthen exercise on left arm,  taking Q10 200mg TID, Mag, fish oil, Tumeric, Calcium, eating healthy.

 

PinkDaisy.

Edited by pinkdaisy

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Pink Daisy,

 

You're doing it. If you're symptoms are minor, it'll be years before PD really effects your life. Parkinson's progresses really slow, so keep excercising and enjoy your family. Consider this a speed bump in life.

 

Dave

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Pink Daisy,

 

You're doing it. If you're symptoms are minor, it'll be years before PD really effects your life. Parkinson's progresses really slow, so keep excercising and enjoy your family. Consider this a speed bump in life.

 

Dave

 

Agreed. It's easy to think the worst. IF you have PD each of us reacts differently. Until doctors figure out whats going on, for the moment its good to stay focused on exercise and diet. Take care. 

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Exercise is the only thing shown to slow the progression of PD.

 

I am 2 1/2 years after being diagnosed with PD and don't take any PD meds. I walk 12,000 steps a day; attend Delay the Disease class 3 days a week; and lift weights two days a week. I also have a positive attitude and try to life a normal life.

 

Keep a positive attitude; exercise; and keep living your life normally and you'll do fine!

Edited by PatriotM
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Hi Pink Daisy !

 

I am Mireille, I live in France near Bordeaux.  Was diagnosed at age 34, some 29 years ago. My advice is the following   Relax and don't think too much about the future. Take a day at a time. You will probably get medications that will help you tremendously. If properly medicated, you can be almost symptomfree for several years. If you find time in a busy schedule of a full-time working mother, you can exercise but for the time being, I would stay away from Parkinson's classes and meetings as you don't want to be confronted daily with persons already further down the Parkinson's road.  This disease takes so many different aspects that what you see in someone may not necessarily happen to you. For instance, I read that someone managed to "conceal" her condition for years.  I certainly would not have been able to because my tremors were so obvious, and so much linked to stress and emotions that try as I might it would have been totally impossible.  Maybe your tremors will remain internal so why worry at the look of someone with terrible shakes ?

It's nice to find support here but I would rather you continue living as before, and carry on trying to forget about it.  PD is not a death sentence and you will come accross people with much worse condition.  When you reach a certain level of acceptance of this disease, you will find the proper context to speak to your children and explain you don’t die from Parkinson’s. (that is their biggest worry) and that nobody knows why it happens (they tend to put the blame on themselves). I had my son when I was already diagnosed so there was no need for a coming out but when I had DBS, my son was only seven and it was a big shock for him despite the preparations and explanations that we gave him beforehand. It is not easy for a child to see his/her mom come back from hospital with a scarf on her head that she never takes off because her head was shaved for surgery! I would recommend you see a good child psychologist before you talk to your children as I feel if we had sought help, we could maybe have handled the situation better. I have not managed to avoid my son being so  worried and nervous about the whole situation.

Anyhow, please try to stay positive, you see,after almost 30 years of diagnosis, with the help of medications and deep brain surgery, I am still around, practicing my English with fellow Parkies (my cognitive abilities don’t seem to have suffered so much) and the research is moving fast and I am sure you will be just on time for new developments in the treatment of Parkinson’s.

Regards,

MIREILLE

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Pinkdaisy,

 

I'm 56 and started my symptoms little over two years ago...

 

Please don't fall down the rabbit hole of tears and depression....Daven is right..you have many good years ahead of you..

 

The trick is this...stay positive, stay active, very active and love life.....

 

You are the same person as you were before you were diagnosed....the greatest gift is now you know what's happening....you now know what your fighting...

 

You have 2 kids that need their Mom to fight her biggest fight...

 

I'm from Vancouver, I'm thinking perhaps you are French Canadian? English being second language...

 

Cheers

Discovery

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Hi pinkdaisy,

 

I am 47.  I am in my 15th year with this disease (diagnosed at 33) and am still working full time and functioning independently.  I know it is scary, but as others have said, you are doing the right things. Young onset PD does often progress very slowly.  Keep encouraged!

 

Blessings,

 

Mihai (Michael)

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Discovery,

 

Thank you SO MUCH for your support. Yes ,  will fight and be strong but it's so HARD now, very hard with the news. I am still crying while  reading your response. Tears just rolling out.  Don't want to cry in front of my kids and husband,  will try to keep daily things normal.

 

I would like to visit Vancouver some days.

 

Thank you

Edited by pinkdaisy

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PinkDaisy ....please cry and cry some more if this is what you need to do...it's ok...

 

Strength is not measured by how long you can hold it in...it's measured by how freely you can let it out..

 

Please feel my hug...all our hugs...

 

Discovery

 

I was born and raised outside of Toronto in St. Catharines.....my family still live there...

Edited by Discovery
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Hi Mireille,

 

thank you for sharing your story. My husband said as you PD is not a death sentence. Right now I just have stiffness on my left  fingers and on/off discomfort, thumb twist and jerking movement of left arm and leg at times.  I hope  I will have slow progression as Daven said.

 

Hi Discovery, thank again, I feel your hugs. When kids go back to school tomorrow,  I will let my tears come out as much as possible. St. Catherine is a beautiful place.

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Start drinking green tea, take vitamin d, magnesium, b complex vitamins, and other brain foods daily

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My kids are 12 (well, in a couple weeks), 9, 4 and 3.  I'm 38 and also work full time.  I do take meds, but try to keep a positive outlook.  I still do pretty much everything I did before symptoms started, I just make occasional adjustments.  For example, if I'm going to do something that is both physically strenuous and mentally stressful I strictly limit how long I do that activity as otherwise I pay for it with much worse PD symptoms like tremors and anxiety attacks.  If I limit myself correctly I don't have those problems.  Sometimes I just need to take extra breaks to keep from getting bad cramps (dystonia) or I just switch between different activities so I don't work one part of my body too hard for too long.

 

Hardest part for me has been to maintain discipline with timing of meds and especially food near medication times.  If your doctor puts you on any medication it is very important to maintain a consistent schedule, and to also keep intake of food separated from medication.  Meds should be taken a minimum of 30 minutes before eating, or at least 1 hour after eating.  If your stomach can't handle that some low/no protein food is OK.

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Pinkdaisy,

 

I've been diagnosed for over 2 years. In this time I have spoken to audiences of 1000 on research that I've done. Received 2 promotions at work and written a document that gave my hospital it's 5th Magnet designation (and we're the 5th hospital in the world to achieve it). I'm saying this not to brag but to let you know that life isn't over. I cried terribly when I was diagnosed and still have days when I will cry BUT I know that I can make decisions about how I choose to live. I exercise minimally 3 times a week and strive for 12,000 steps a day (although I usually don't make it). I exercise in my office when I can and take the steps to my 5th floor office a couple of times a day. Exercise as much as you can and keep a positive attitude. That was actually the prescription my MDS wrote for me and it works. I don't take any meds and want to hold off for as long as I can.

 

Know that you are in our thoughts as we all share a future. As much as we don't want to be in this "club" we are together and are here for each other.

 

Please take care

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Thank you SO MUCH Rocki for sharing your positive story and your support. I will try to exercise a much as I can. Tears jus coming out while jogging or exercising thinking that used to spend these time with my two kids. Planning to retire in 9 years to look after my parentsl. Do you mind to share with me your current PD symptoms? what supplements are you taking.

 

Thank you,

 

PinkDaisy,

Edited by pinkdaisy

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Hey pinkdaisy! I'm musicman, but go by MM here on the forum. I would nickname you PD, but that might get confusing :-P

 

Anyway, it's been about 2 years since diagnosis for me, and so far so good. In a way, it was an awakening. I am doing more NOW than I did for the last 10 years. Partying, traveling, and generally having fun. I am on levadopa, but it's a small amount, and I think it must help. I also am able to go to the gym and work out everyday, but I don't go nuts doing it.

 

So, don't sweat it. Sure, it's not GOOD news, but it ain't the end of the world either. Use this as an excuse to have as much fun for the next 5 years as possible. After 5 years, then say "I'm gonna have as much fun for the next 5 years as possible", and just keep going from there.....

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Hello Pinkdaisy. Everyone here has given you the best advice. I was diagnosed 1.5 years ago. I am on meds but I feel great. Since my diagnosis I went through all the emotions. Felt like my world had ended, then realized it didn't, then realized I am more than Parkinson's. I am Adam, I just happen to have PD. Not going to let it stop me. Sure I have modified how I do some things. For the most part I continue living. I am 37 now and I look forward to another fun filled adventurous 30 years.

 

Blessings

Adam

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Hi Musicman and Adam

 

Thank you so much for your warm , caring  support. I am into 2nd week of knowing my illness. I feel a little better now, back to work. Hand cramp and foot cramp are there most of the times, as such can't forget I have PD. I am trying to take Advil but not much help. I will try to be positive but cant at this moment. I am sure I need time and I will get there for my family. You all are wonderful souls.

 

Pinkdaisy,

Edited by pinkdaisy

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Hi pinkdaisy,  You are receiving my first post!   I'm a newbie here but not to PD.   You've gotten a lot of good advice.  Maybe my story will help too.  My symptoms started about 13 years ago.  I was 53.  They were pretty much identical to what you're experiencing now, left side and all.  To this day, at 66, the only major impact PD has had on my life, is that I had to give up skiing.   My left leg couldn't put enough pressure on the ski to stay in control during turns.

 

As symptoms became more annoying  (arm rigidity, straining sensation in my left hamstring etc.), my doctor would add additional drugs to the mix..  Currently, my fingers move better than they did 13 years ago, my balance is good, I've got some arm swing back, particularly when walking quickly.  .I have almost no discomfort in my leg, and I have minimal tremor (it does get worse under stress)..  I am on 4 different drugs, but I've been to tolerate them all.  Every time I'm checked, my cognitive abilities have maintained.  Everyone is different, but this is one positive (so far) example of what the future may hold.  I do have a few tips:

 

   Think of PD as an inconvenience, that you can adapt to as necessary.  Sometimes, when a symptom gets really annoying, medication can be effective..  Otherwise, just look for different ways of doing things.

 

   Besides general exercise, find something that you like to do that takes some dexterity.  For example, I play around with a bass guitar.  I feel that moving and stretching to reach different notes has really helped to loosen up my hands.

 

   This one may sound strange.  It is possible to relax your body for short periods to reduce tremor and tightness.  I do this by sitting or lying still and visualize the muscles relaxing and sagging towards the floor.  I count down "3-2-1-sag".  The sensation is sort of like letting the air out of a balloon.  It takes practice.  Sometimes, I think I've done it, but find I can relax a bit more by repeating the process.  I find that doing this periodically makes me feel looser.  Maybe it's some kind of yoga, I don't know.

 

Well, that's all I've got for now.  I hope it's helpful.

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Hi RichB,

 

Thank you for sharing your story, which lifts up my spirit a bit. Thank again. Did you take medications  right after being diagnosed? What are your regular exercises? I will see my neurologist next week, second visit after 7 months.  I'm  not sure what's he going to recommend for my left hand cramp and stiffness and little bit on left foot , internal tremor in left leg.  I am happy  that you have been doing good after 13 years of having PD.

 

Accepting the illness is still a challenge for me. I am still not there yet.  You are right on that the symptoms are annoying especially when you were so healthy, not on any medications. It's very hard for me trying to hide the symptoms to be super mom as before with my two kids. Mom is everything and does everything :-P Yes, mom will be strong for them. It's also heart breaking when my parents checking on my symptoms. I used to tell them try to stay healthy for another 9 years and I would  take early retirement to look after them.

 

I have been jogging daily and play table tennis on my left arm with the machine which I really enjoys. When the ball comes out from the machine I swing  my arm as far to the back and slam /hit as hard to the ball. I also bounce basket ball on my left fingers, focusing on five fingers. I will try to remind myself  to use my left arm while doing chores as much as possible.  Again many thank , your post is helpful and I am sure other  newbies will read and learn from your post. Thank you for the tips. I will try to relax muscle  exercise tonight.

 

 You take care, hoping you will do well  for another 13 yrs. I am crossing my fingers my PD will progress slowly as yours.

 

PinkDaisy

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Hi pink daisy. My name is Brian. Im 54. I was diagnosed at 31. They told me I could work maybe 5 more years when I was diagnosed. I worked full time and some over time for 18 years. One things certain. Parkinsons affects everyone differently. You're doing the right stuff. Hang in there. Take this strange adventure one day at a time.

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A warm welcome from me too!

 

Great posts by everyone!

 

My own advice is to avoid -as much as you can- dark thoughts and stress which both fuel our symptoms and progression. Whenever you have a "poor-me" moment, try to remind yourself of all the things you have -and they are many!- instead of those you have lost -or think that you have lost...

 

PD can't stop you from  living your life exactly as you had planned. It just takes a little more determination and perseverance.

Edited by christie
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