Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
ProgressiveB

How many other YOPD people are out there?

Recommended Posts

I've been in the same boat, 31, diagnosed 9 months ago, and having trouble relating to a lot of older people whose concerns don't aligh with mine. How long to delay medical intervention to mitigate long term side effects, when and how to tell a small (3yr) child, how to hide it at work, or when to tell at work, how to change retirement savings plans, how to help my spouse cope...lots of issues that are specialized to a younger demographic. Any one find anything yet?

  • Like 2

Share this post


Link to post
Share on other sites

I've been in the same boat, 31, diagnosed 9 months ago, and having trouble relating to a lot of older people whose concerns don't aligh with mine. How long to delay medical intervention to mitigate long term side effects, when and how to tell a small (3yr) child, how to hide it at work, or when to tell at work, how to change retirement savings plans, how to help my spouse cope...lots of issues that are specialized to a younger demographic. Any one find anything yet?

The treatment I heard was to not wait and get the best of your younger years (PD symposium 2015 UTSW).  Whether it is by more exercise, diet, surgery (DBS), or medication.  It isn't clear how significant your symptoms are, but If just a small dose of medication will help, I would recommend doing it.  The theory behind DBS has been a method to use if medicine options are less useful or you can't tolerate the medicine.  However, I have heard the new theory that YOPD can benefit more by using a DBS earlier, and not waiting until the last resort.  That takes years of data to prove, so not all doctors will agree. 

 

As a father of 4 kids, I happen to agree with getting the best years as much as I can.  With my children, I have explained it to them, but mine are now 18, 16, 13, and 9.  The 9 year old has an understanding, but it is not completely understood.  In my opinion and experience, there is little value in telling your 3 yr old everything.  I really believe that is too young.   You could state simple things in good humor, like Daddy needs help with his shoes, can you help me?  They LOVE to help and remember that you need help, but don't know why and won't understand until later.  I remember my youngest who was around 6, maybe 5, when I was slow to help him with his shoes because I couldn't tie them well.  I blamed it on a pinched nerve and thought I needed surgery.  He knew I needed a doctor to "fix" me.  So, when would see me struggling, he would ask when is the doctor going to fix me?  I didn't know I had PD at the time, but the basic issue was just enough for him to understand . 

 

Your spouse should get well educated on PD, that will help her.  There are lots of pointers, articles, and guidance on the NPF and PDF sites to help you develop a plan with her.  She should accompany you at the appointments too.

 

 

When to tell work... depends on you, but if you need help, just ask.  That is what HR is for.   Just don't overdo it to hide it.

  • Like 1

Share this post


Link to post
Share on other sites

Murray, thanks for the reply. 

 

I've been mulling over that exact concept, weighing benefits as best I can. So far, majority of symptoms are all right side. Tremor right hand, cramps/dystonia right leg and foot, no right arm swing, decreased grip,  some issues with fine motor skills, but the fatigue has been the worst of them all. Combined with crappy, choppy sleep, I'm only surviving with regular caffeine uptakes. (Sleep study next week). Starting to have some slight random movement of my thumb in my right hand, and a few random moments where I'm so tired that I can't gather my thoughts, but that's it.  As of yet, I've only tried Azilect. I was on it for 3 months, with no real improvement and a monthly cost of $650. Just spoke with my MDS and we're switching to selegiline to try that out. So, my thoughts are do I push for more pharmacological intervention and improve and delay anything I can, while increasing my happiness and ability to participate with my family. Or, do I hold out and struggle through this now until things get bad enough to require meds and hopefully prolong my independence. My MDS is still of the mindset that delaying any form of levadopa is in my best interest, to decrease my overall length of time on it and possible delay side effects. Catch 22, I guess.

 

My daughter is 3, and she knows something is wrong because of my "shaky hand". She'll hold it and say she's trying to stop it and its cute and also a little heart-breaking. I'm not trying to figure out how to explain the complexity of a life altering, progressive, incurable, neurological disease to a 3 year old, but more continually worrying about her growing up seeing this and having to explain it to her later on. That, coupled with the fact that I feel terrible for her that she will have to bear this weight and not know/have a healthy father. So, it's more selfish worry than actual worry. 

 

I lucked out with my wife. She has been incredible to have by my side. She just ran the Marine Corps marathon for Team Hope for the NPF, and she has been attending education classes with me for PD, as well as pushing me when I need pushing and giving me time and space when I need them. I would venture she's probably read as much or more than me about Parkinson's. 

 

For work, I have to hide it to the best of my ability. I'm in a track where I've continually advanced and taken on larger more important roles for a commercial construction firm and the mindset of the owners would immediately remove me from that. When I'm ready to be removed or my work is being impacted, I can accept that, but until then...

 

I understand I'm not far advanced, my symptoms are not overly impactful yet, and I have bounds of support. I'm lucky to that extent. 

 

I'm just looking for people who are in, or have lived through, relate-able experiences. I figured combined experience is way better than my one perspective. 

  • Like 1

Share this post


Link to post
Share on other sites

Murray, thanks for the reply. 

 

 

Ollie,  thanks for the explanation.  One strategy I am planning on is DBS because it known to decrease your medicine needs significantly.  The, if DBS wears off, go back to meds and start that cycle. I know two people, one at my workplace, that had DBS and no need for PD meds at all after that! 

 

The thing that can be difficult is your child wants to paly and you don't feel like it.  I have learned to push past that sometimes and usually feel better overall after. It is usually harder to get started, then I feel energy increase after getting moving more.  Then, I sit down, and the cycle can start all over.  The medicine, when it is working well, gives me lots of motivation, but not at low doses.

 

Children do pick up on things pretty easily and I know my youngest struggles.  I worry that I don't smile enough, but I joke a lot and then he knows.  They will act out in different ways when they don't think you are giving them the attention they want.

 

Your MDS sounds pretty conservative and the opposite of the theories here in my area.  You are the captain, but I know sometimes it is hard to think clearly.  I found my wife to be a great help in that situation.

Share this post


Link to post
Share on other sites

Dear Ollie,         

I am a young onset (at age 34) who will be “celebrating” 30 years of diagnosis next April. I walked the same path and can understand how you feel.

I took medication (L dopa) right after diagnosis, as I preferred to enjoy my younger years to the fullest and indeed I had  what is called a “honeymoon period” that lasted more or less 4 years. I then got pregnant and pregnancy did bring about a slight worsening of my symptoms.

My only child has always known me as a “shaking mum” and this has never been a problem for him.  As a matter of fact, he used to sit on his left hand, just the way I did, as I was trying to master my left shaky hand.  I spoke with him about my disease when he was 7, as I was going to have deep brain surgery (DBS).   He did not show any bad reaction, as he knew already I was not well.  I think  my medical condition contributed to his warm and outgoing personality, showing great  consideration for other people’s  predicament .  He has a very caring nature and is always ready to help others.  Although he is an only child, he has never shown any type of selfishness  nor is he completely self obsessed.  DBS put an end to my shaking altogether, so I am no longer a “shaking mum’, but as years went by, I developed other symptoms. Now my mobility is limited and my face has a mask-like appearance but that does not mean we don’t laugh together and he knows my stern looks don't mean I am upset or miserable.

I also have a husband who is really devoted and caring. I consider myself lucky and cannot thank him enough for being at my  side always.

As far as letting people know at work, I can’t really help as I live in France and the situation is very different in Europe from what it is in the States.  My employer knew from the time I was hired of my medical condition and accepted the situation. I was able to work until I reached 55.  I then decided to retire (early) as I did not want to perform  poorly.  My medical condition did prevent me from certain job assignments (I was a translator in  a European Union organization) like ministerial meetings, but all in all I had a very rewarding career despite Parkinson’s.

I  think I covered all questions you mentioned.  Take very good care and give a big hug from me to your little girl (Three is a great age!).

Regards

mireille

Edited by MIMILASTER
  • Like 2

Share this post


Link to post
Share on other sites

Mireille-

Your employment situation sounds like a dream.  Unemployment rates are significantly higher for the disabled. Unfortunately in America PD is not universally covered under the American's with Disabilities Act and even if it were, employment among the disabled is a challenging at best.

 

As someone who was able to have a career, would you advise a lower stress position/lower responsibility level so that you can lengthen your career?  I ask as someone who had gotten fairly high up at a younger age.  I don't know how sustainable that is long term.

Thanks!

Waywrd1

 

 

Dear Ollie,         

I am a young onset (at age 34) who will be “celebrating” 30 years of diagnosis next April. I walked the same path and can understand how you feel.

I took medication (L dopa) right after diagnosis, as I preferred to enjoy my younger years to the fullest and indeed I had  what is called a “honeymoon period” that lasted more or less 4 years. I then got pregnant and pregnancy did bring about a slight worsening of my symptoms.

My only child has always known me as a “shaking mum” and this has never been a problem for him.  As a matter of fact, he used to sit on his left hand, just the way I did, as I was trying to master my left shaky hand.  I spoke with him about my disease when he was 7, as I was going to have deep brain surgery (DBS).   He did not show any bad reaction, as he knew already I was not well.  I think  my medical condition contributed to his warm and outgoing personality, showing great  consideration for other people’s  predicament .  He has a very caring nature and is always ready to help others.  Although he is an only child, he has never shown any type of selfishness  nor is he completely self obsessed.  DBS put an end to my shaking altogether, so I am no longer a “shaking mum’, but as years went by, I developed other symptoms. Now my mobility is limited and my face has a mask-like appearance but that does not mean we don’t laugh together and he knows my stern looks does mean I am upset or miserable.

I also have a husband who is really devoted and caring. I consider myself lucky and cannot thank him enough for being at my  side always.

As far as letting people know at work, I can’t really help as I live in France and the situation is very different in Europe from what it is in the States.  My employer knew from the time I was hired of my medical condition and accepted the situation. I was able to work until I reached 55.  I then decided to retire (early) as I did not want to perform  poorly.  My medical condition did prevent me from certain job assignments (I was a translator in  a European Union organization) like ministerial meetings, but all in all I had a very rewarding career despite Parkinson’s.

I  think I covered all questions you mentioned.  Take very good care and give a big hug from me to your little girl (Three is a great age!).

Regards

mireille

Share this post


Link to post
Share on other sites

Mireille-

Your employment situation sounds like a dream.  Unemployment rates are significantly higher for the disabled. Unfortunately in America PD is not universally covered under the American's with Disabilities Act and even if it were, employment among the disabled is a challenging at best.

 

As someone who was able to have a career, would you advise a lower stress position/lower responsibility level so that you can lengthen your career?  I ask as someone who had gotten fairly high up at a younger age.  I don't know how sustainable that is long term.

Thanks!

Waywrd1

 

It's difficult to say. It all depends on the context. I would try to stick to my career plan as long as I can but would go for lower responsibility, as soon as I notice that my  performance sufffers from my medical situation. I would not want to be "caught unguarded" so to speak.

But I realize my employment situation is very different from what you get in the States.

Regards;

mireille

Share this post


Link to post
Share on other sites

For me, I am going to hide any and all symptoms as long as is possible. While I would love to think that my employers are understanding, compassionate people; I would also expect that they wouldn't hinge a hugely pivotal position and success of an office location on a person who may not be able to keep working for them for the duration.

 

It feels sneaky to hide it, but it's also in my best interest to do so. 

Share this post


Link to post
Share on other sites

Took the at home version of the sleep study last night. By far one of the worse nights of sleep I've ever had, especially thanks to the big box strapped to my chest, the things in my nose, the electrodes all over my chest. Fun. I'm fairly certain my doctor just wants me to take it to confirm I don't have sleep apnea and he can give me sleep meds. We shall see.

 

I wanted to get some imput from the recently diagnosed, long long diagnosed, YOPWP about meds. So far, we tried Azelect. My main reason was I was hoping it would help with fatigue and stiffness. I noticed nothing during the 4 months. Then with an insurance renewal it went up to $650 a month. I just started selegeline two weeks or so ago. Two 5mg pills (upon waking and at 11:30). I've also noticed nothing from this. 

 

My main complaints right now would be fatigue, muscle rigidity and painful cramps in my leg and foot. The tremor is still mostly all in my right hand, and I can still do most things the same. I've had a few random leg tremors, some internal tremors (which are freaky as hell, right?), but I can deal with that over the other stuff.

 

Any body with some experience, input, direction, bossy-self-important orders or maybe some genuine heartfelt guidance? 

  • Like 1

Share this post


Link to post
Share on other sites

Ollie,

 

I started out on Azelect as well. So far it has helped some. The fatigue is a hard monster to tame. After being on azilect for 2months my doctor and I decided to go with 25/100 Carbidopa/levodopa 3 times daily in combination with Azilect. This made a huge difference. My symptoms at the time were not much different than you describe.

 

You will people of both camps here. Some will say hold off on C/L other will say take it. I can tell you I have been on it for a year and have yet to have ill effects. I still battle the fatigue monster daily. I was diagnosed with Sleep apnea long before PD. Finding the right meds, timing, exercise and diet are all key elements.

 

Best of luck. Feel free to ask me anything. My current meds are in my signature line.

Share this post


Link to post
Share on other sites

Took the at home version of the sleep study last night. By far one of the worse nights of sleep I've ever had, especially thanks to the big box strapped to my chest, the things in my nose, the electrodes all over my chest. Fun. I'm fairly certain my doctor just wants me to take it to confirm I don't have sleep apnea and he can give me sleep meds. We shall see.

 

I wanted to get some imput from the recently diagnosed, long long diagnosed, YOPWP about meds. So far, we tried Azelect. My main reason was I was hoping it would help with fatigue and stiffness. I noticed nothing during the 4 months. Then with an insurance renewal it went up to $650 a month. I just started selegeline two weeks or so ago. Two 5mg pills (upon waking and at 11:30). I've also noticed nothing from this. 

 

My main complaints right now would be fatigue, muscle rigidity and painful cramps in my leg and foot. The tremor is still mostly all in my right hand, and I can still do most things the same. I've had a few random leg tremors, some internal tremors (which are freaky as hell, right?), but I can deal with that over the other stuff.

 

Any body with some experience, input, direction, bossy-self-important orders or maybe some genuine heartfelt guidance? 

 

I had a bad (and apparently rare) reaction to Azilect, thankfully stopping before I ran out of the samples my MDS gave me so at least I didn't have to pay for any of it.  

 

That said, I've never tried selegeline but I do know that it gets partially metabolized into amphetamines.  So, for some people at least, it can help to combat fatigue because of that.  2 weeks is about the minimum to start to see full effects from the MAO-B Inhibitors from what I understand.  So you might want to give it at least a little longer before you pronounce judgement on it.

 

Right now I take C/L exclusively.  I fight fatigue but I don't know how much the C/L is helping vs hurting on that front.  For quite a while I was on 1.5 tabs 3x per day.  Couple check ups ago my MDS had me cut back to 1 tab for my mid-day dose.  That seemed to help with the 3PM crashing a bit, but some days it's still a real struggle to keep going around mid-day.  

 

Speaking of fatigue.  It's bed time.

Share this post


Link to post
Share on other sites

Ollie-

 

I can't take Rytary. Very allergic. But, plain old sinemet and some CR at night works for me.

 

I also had a horrifically bad sleep study. 139 minutes asleep out of 465. some in stahe 1 and 2, only 6 in #3, and none in REM. And yes, the sheer quantity of C/L is partially driving my insomnia. Im on 2 RR, 6xd with a CR at night

 

 

Im not a fan of sleep meds but honest to god, sleeping better is worth it. You won't realize how bad it was until you're sleeping semi-normally agsin.

 

As an overall strategy I would like to try an agonist to see if I can reduce the C/L, because of other side effects but sleep meds may never go away in a PWP.

Edited by Waywrd1

Share this post


Link to post
Share on other sites

I am 44. I haven't met a "young" one yet that is not in the mid 50s. Working with a family and trying to get real involved with PD groups or trials is tough.

Same here. It took me 6 months to even get a lead on a local YOPD group. I've gone to every meeting since, but turnout has been poor. I have yet to meet someone near my age or with kids still at home. At RSB, Tai Chi, PD Self Efficacy, & every educational seminar I've been to, I'm the youngest patient there. I didn't see anyone my age at Moving Day, but it's possible that I missed them. I'm sure they're around; I've just gotta keep looking.

  • Like 1

Share this post


Link to post
Share on other sites

Hi all,

I'm new to this forum, 43 years old, from Seattle, WA and recently diagnosed although I have been having symptoms for two years.  The start of my PD was sudden onset over an hour which I know is unusual.  My motor signs on my left are pretty bad but my right side is about 95% normal and my balance and strength are still good. I am currently not on meds.  Did a trial of Azilect which made me 10x worse over a week - went from walking almost normally and as long as I wanted to not being able to make it more than a block or two.  Better once I stopped.Is anyone else going it without meds?  I am doing yoga,boxing, circus arts and many supplements.

 

I wanted to add that the fatigue and anxiety I had was almost debilitating.  I started Niacin about a month ago and it took care of both of those for me.  I worked up slowly as you get full flush with every dose - google "niacin flush".  I currently take 1gram three times a day.  It helps my motor issues very slightly but is a life saver for the mental aspects of this disease for me.  

 

best wishes,

Lena

Edited by lenamegan
  • Like 1

Share this post


Link to post
Share on other sites

Welcome, Lena, from another Seattleite! I know of some support groups and benefits you can take advantage of here. Send me a private message and I'll give you the scoop.

 

Dianne

Share this post


Link to post
Share on other sites

Welcome Lena,

 

I'm new to this as well, not taking PD medication.  My symptoms are mainly on my left hand . I will have my third follow up appointment with my MDS in 3 months, still struggling with accepting the diagnose at times. We briefly talked about Azilect because I brought up the subject.  

 

I am trying to run on treadmill daily but can make about 5 days a week due busy working, looking after my kids. I also enjoys playing ping pong with the robot. I like to have 8 hrs sleep at night. I keep myself busy until I go to bed.

 

You take care,

 

Pinkdaiy

Share this post


Link to post
Share on other sites

Same here. It took me 6 months to even get a lead on a local YOPD group. I've gone to every meeting since, but turnout has been poor. I have yet to meet someone near my age or with kids still at home. At RSB, Tai Chi, PD Self Efficacy, & every educational seminar I've been to, I'm the youngest patient there. I didn't see anyone my age at Moving Day, but it's possible that I missed them. I'm sure they're around; I've just gotta keep looking.

Yes, there are some good things out there I wish I could take advantage of, but that would mean part-time work hours.  I would love to have part time hours if I could afford to. 

 

I like to get involved and I don't mind the age gap too much.  Yet, the daily life with PD is quite different for one who has a career and growing children to manage.  I hope you find something you like.  It would be great to have a group of similar age and meet each other's families.  I think the whole family could use someone to relate to.

  • Like 1

Share this post


Link to post
Share on other sites

Welcome Lena. What a great name my great grandmothers name was Lena and I was born on her birthday by the way, god bless her. I agree it is very difficult to find and connect with others within the YOPD community. Partially because we're a minority within the greater Parkinsons picture. I just try to do what I can on my own with the help and support of my family. I think it's better to have others around to help push you when you want to throw in the towel PD or not.

Share this post


Link to post
Share on other sites

Thanks for the welcome!  I just got back from seeing a naturopath who specializes in PD.  Just got my first glutathione injection and my tremor is about 50% better and slight improvement with fine motor control.  Feeling a little hopeful!  I find it hard to juggle this disease with trying to support my son and me.  Luckily I have my own business with very loyal and supportive clients - feeling very blessed for that but worried about the fine motor going more. ShakerDave my great grandmother was Lena also!

best wishes!

Share this post


Link to post
Share on other sites

Injection?  Not familiar with that.  I hope you get better with treatment as I have.  I was very worried about supporting my 4 kids and wife.  Until recently, I was the sole provider.  I still am about 85% of the income.  We made some changes and I reached out to all the resources I can use from my community.  NPF has a nice staff to answer questions and get advice from.  We used their support a couple of times.  

 

I have a backup plan if things get worse.  That provides some comfort. 

Share this post


Link to post
Share on other sites

Hi MurrayPD,

the glutathione is a powerful antioxidant.  It's been shown to help with PD symptoms in some people.  There is also an oral and internasal form.  I understand your work concerns.  I'm the sole provider for my son and me.  I have a back up plan that gives me about 30-40% of my current income (I have two businesses and one is run by a great employee)  but Seattle is an expensive city so hopefully can continue my physical work also.

  • Like 1

Share this post


Link to post
Share on other sites

Patriot uses exercise heavily, and it works for him. I'm inclined toward that myself but am fighting orthopedic injuries.

 

Hi all,

I'm new to this forum, 43 years old, from Seattle, WA and recently diagnosed although I have been having symptoms for two years. The start of my PD was sudden onset over an hour which I know is unusual. My motor signs on my left are pretty bad but my right side is about 95% normal and my balance and strength are still good. I am currently not on meds. Did a trial of Azilect which made me 10x worse over a week - went from walking almost normally and as long as I wanted to not being able to make it more than a block or two. Better once I stopped.Is anyone else going it without meds? I am doing yoga,boxing, circus arts and many supplements.

 

I wanted to add that the fatigue and anxiety I had was almost debilitating. I started Niacin about a month ago and it took care of both of those for me. I worked up slowly as you get full flush with every dose - google "niacin flush". I currently take 1gram three times a day. It helps my motor issues very slightly but is a life saver for the mental aspects of this disease for me.

 

best wishes,

Lena

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×