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mplsgrl86

30 yo Husband diagnosed with YOPD

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mplsgrl86    2

Hello,

After a month of many tests, my husband was officially diagnosed with YOPD this week. We knew this was a possibility as we were going though testing, but the official diagnosis knocked me off of my feet. We are in the early stages of the disease and just started the Neupro patch yesterday. He is still able to function fairly normally, but has difficulty with writing and typing. We are hoping we can put off Levodopa as long as we can.  

My husband is only 30, we have a little boy who is a year and a half and were contemplating having another child - and then this huge life changing diagnosis has sent my view of our future in free fall. Our friends and family have been very supportive, but no one knows what to say or how to help. I wouldn't either if I were on their side of the situation.  The future is so unknown and some of the posts I have seen on these message boards have really worried me on what we could face down the line. I feel so selfish that I am concerned about how it wil affect me, and not how it will affect my husband. 

I am all over the place with this post, so I do apologize. I am just hoping someone out there can relate to this post somehow and will be able to give some advice or words of wisdom as we embark on the terrifyingly unknown path that YOPD has in store for us. Thank you.

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DaveN    426

This is not the end of the world for your husband or for you either.  Were you this upset when you didn't know what the diagnosis was? Parkinson's progresses very slowly so you have a lot of good years ahead of you before it gets in your way.  By that time there might be better solutions and you'll be used to and prepared for all the different changes. You need to take a step back.  The best advice I can give you is for your husband to start a vigorous exercise program as that is the only thing known to slow down the progression of PD.

Dave

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mplsgrl86    2

DaveN, I appreciate your advice. I really am trying to put a positive outlook on this, but it hasn't been easy. I am hoping that you are right and that more promising options will be out there for YOPD treatment as time goes on. 

My husband has been building in time for exercise to his daily routine as our MDS advised. So we are hoping that will help progression as you suggested.  

Andrea

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Pathfinder    65
9 hours ago, mplsgrl86 said:

Hello,

After a month of many tests, my husband was officially diagnosed with YOPD this week. We knew this was a possibility as we were going though testing, but the official diagnosis knocked me off of my feet. We are in the early stages of the disease and just started the Neupro patch yesterday. He is still able to function fairly normally, but has difficulty with writing and typing. We are hoping we can put off Levodopa as long as we can.  

My husband is only 30, we have a little boy who is a year and a half and were contemplating having another child - and then this huge life changing diagnosis has sent my view of our future in free fall. Our friends and family have been very supportive, but no one knows what to say or how to help. I wouldn't either if I were on their side of the situation.  The future is so unknown and some of the posts I have seen on these message boards have really worried me on what we could face down the line. I feel so selfish that I am concerned about how it wil affect me, and not how it will affect my husband. 

I am all over the place with this post, so I do apologize. I am just hoping someone out there can relate to this post somehow and will be able to give some advice or words of wisdom as we embark on the terrifyingly unknown path that YOPD has in store for us. Thank you.

I totally understand where you are coming from. My husband has Parkinsonism and Dementia, but he is in his late seventies, not young like your husband is. The exercise advice is spot on, hubby refuses to even think of working out, because of the dementia he can't understand it's importance.

Try to calm down, hard to do l know, you all will get thru this. Educate yourselves, that has helped me tremendously. We do have a YOPD thread here that is very active. Breathe. Come here often, so many kind and helpful people here to support you and hubby.

Edited by Pathfinder
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mplsgrl86    2

Thank you Pathfinder. I truly appreciate your advice and support.

That would be difficult working through both Parkinson's and Dementia together. As far as exercise, the first neurologist we saw that initially diagnosed my huband (before any testing was even done) said that exercise and diet would matter. I am very happy we got a second opinion and was told of the importance of exercise for our current MDS.

My initial post was fairly dramatic, but my unfamiliarity with this topic has created a lot of fear and uncertainty. I will work towards educating myself more on this disease like you advised and I hope it will help me as much it has helped you. 

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LAD    202
9 hours ago, mplsgrl86 said:

Hello,

After a month of many tests, my husband was officially diagnosed with YOPD this week. We knew this was a possibility as we were going though testing, but the official diagnosis knocked me off of my feet. We are in the early stages of the disease and just started the Neupro patch yesterday. He is still able to function fairly normally, but has difficulty with writing and typing. We are hoping we can put off Levodopa as long as we can.  

My husband is only 30, we have a little boy who is a year and a half and were contemplating having another child - and then this huge life changing diagnosis has sent my view of our future in free fall. Our friends and family have been very supportive, but no one knows what to say or how to help. I wouldn't either if I were on their side of the situation.  The future is so unknown and some of the posts I have seen on these message boards have really worried me on what we could face down the line. I feel so selfish that I am concerned about how it wil affect me, and not how it will affect my husband. 

I am all over the place with this post, so I do apologize. I am just hoping someone out there can relate to this post somehow and will be able to give some advice or words of wisdom as we embark on the terrifyingly unknown path that YOPD has in store for us. Thank you.

As a 45 year old mom of 3 boys and a YOPD....I understand your fears.  It's incredibly overwhelming and there is a whole process of emotions but your family will be ok.  It may not seem like it  right at this moment, but eventually PD becomes part of your life.  You can't control the fact that it has become part of your life, but you can control how you respond to it.  It is not all sunshine and roses but it's not gloom and doom either.

Exercise is key.  A PD specific one is beneficial.  There are lots of programs...educate yourselves and pick one that works.  When I was DX, one doctor recommended dancing.  My husband and I now take ballroom dance lessons.  We even go to formals now...gown & tux.  Never in a million years would I had guessed we would ever take dance lessons.  As much as I feared things PD would take from us, I never thought it would bring us something but it did.  And when we are busting a move in the living room, I forget I have PD.  My kids are older than yours but I think they are more aware that anyone may be fighting a battle that you cannot see and they have definitely learned what it means to be married and love unconditionally.   

 PD was not in the plan.  Life will be different but it can still be great.  PD does not define me, it's a part of who I am now.  I have learned to be present - seize the day.  Eat ice cream for breakfast with your toddler.  

I just listened to a webinar on the Michael J Fox foundation.  It was about YOPD.  It was very informative but not overwhelming.  You can find it on their website under webinars. 

 

Good luck and welcome to the forum.

LAD

Edited by LAD
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coacht    95

Mplsgrl86,

 

I can relate, our four children were 3,5,7, and 9 when this started and it was diagnosed almost three years later. my first reaction was grief for the first week. My DW was a Pollyanna and wouldn't let it get her down. The problem was she would only look at the good things and let everything else go so there was no line of communication between us. That has continued until lately and it still isn't completely open. Getting on the same page with your husband to me is the most important thing going forward. Get all of the crap stuff out of the way so you won't have to worry about things later. I have had to do all of the financial planning, and lately got her to do some estate planning. I would get your wills in order, medical power of attorney, durable power of attorney, living wills and things our of the way. That way you don't have to make decisions when you are possibly really stressed later and can think things through. Having a child makes one aware of, who will be the guardian, how will they be taken care of, etc. more apparent. I can't believe how many people that don't have medical problems do not have a will in place.

 

One big piece of advice from a dear departed friend, was that if you have seen one person with Parkinson's you have seen one person with Parkinson's. I think the people that face a lot of problems tend to post here, people that don't have to deal with much don't since they don't feel the need. Don't let the posts on here worry you too much, you can't predict how long this journey will be, what symptoms will show up, how fast it will progress, etc. Make your plan for the future and adjust it as life comes. I think that can ease your mind a lot. Message me or others if you have questions you do not want the public to see, people are really helpful on here.

 

Coach T

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LAD    202
2 hours ago, coacht said:

Mplsgrl86,

 

I can relate, our four children were 3,5,7, and 9 when this started and it was diagnosed almost three years later. my first reaction was grief for the first week. My DW was a Pollyanna and wouldn't let it get her down. The problem was she would only look at the good things and let everything else go so there was no line of communication between us. That has continued until lately and it still isn't completely open. Getting on the same page with your husband to me is the most important thing going forward. Get all of the crap stuff out of the way so you won't have to worry about things later. I have had to do all of the financial planning, and lately got her to do some estate planning. I would get your wills in order, medical power of attorney, durable power of attorney, living wills and things our of the way. That way you don't have to make decisions when you are possibly really stressed later and can think things through. Having a child makes one aware of, who will be the guardian, how will they be taken care of, etc. more apparent. I can't believe how many people that don't have medical problems do not have a will in place.

 

One big piece of advice from a dear departed friend, was that if you have seen one person with Parkinson's you have seen one person with Parkinson's. I think the people that face a lot of problems tend to post here, people that don't have to deal with much don't since they don't feel the need. Don't let the posts on here worry you too much, you can't predict how long this journey will be, what symptoms will show up, how fast it will progress, etc. Make your plan for the future and adjust it as life comes. I think that can ease your mind a lot. Message me or others if you have questions you do not want the public to see, people are really helpful on here.

 

Coach T

Well saId!!!

 

LAD

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Quietstill    450

Welcome.

There's some really good advice above, and it's all right on spot.  I would add that having a period of panic at the start is helpful, and (to a certain extent) I encourage it.  Panic allows us to process life changing info, and then when we remember how to breathe again, we realize that life hasn't changed, and so it goes on.  Hold to that, how you are the same person before the diagnosis, and your DH is still the same person you love after the dx.  My DH was dx'ed at 64, but there had been something seriously off for an entire decade.  I'm in my 50s, and when the MDS told us, I was relieved it wasn't something much worse.  I still remember it knocking me for a loop, so talking to people who have been through it really helps.  Good luck, stop in occasionally, and dm if you have any questions.

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MurrayPD2    219

Welcome.

I am 46 and I probably started with my significant problems at about 40, probably some minor ones before that. I am glad you found it so early and have time to plan while he can take on diet and exercise.  I was un-medicated until I turned 44 and I did ok, but was relieved to find answer by then because things were getting difficult.  So, now I am on meds and doing ok.  I have 4 kids, and they have managed pretty well with it also.  It really affects the whole family in some ways, but everyone understands.   So, I know I will be managing ok for a few years on medicine alone because I haven't been on C/L  until late 2015.  I also started on Neupro; which was great until I had problems with side effects. I was doing it for the same reason you are concerned about.  I am now looking at DBS as an option to hopefully reduce the medications and have another tool to fight the natural progression.  Even without it, I am able to get on my bike and take short trips with the kids.  Things are better for us than they were before, so we have we don't see it as despair, but a chance to do more together than I originally thought possible. You will find there are many options available for him and the path is not as grim as it may seem today.

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waruna01    44

YOPD progress slowly. If he exercise dairy, sleep well, eat healthy organic food, keep stress under control, he may have a close to a normal life. I also recommend vit d, good herbs such as Ashwaghnda, tripala, colostrum6, chyawanprash, mucuna to be cycled one at a time every few months. 

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Golden01    330

My husband was 52 when he was diagnosed so I know our fears and concerns were not the same as yours might be. My thoughts on what you might find helpful is to find other YOPD families, knowing others in your situation can be helpful; run, not walk, to the best Movement Disorder Specialist you can find; and look for those Parkinson-specific exercise programs. PWR! Moves has been life-changing for us. http://www.pwr4life.org/ 

 Good wishes to you and your family. NPF offers lots of resources. 

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LAD    202
1 hour ago, Golden01 said:

My husband was 57 when he was diagnosed so I know our fears and concerns were not the same as yours might be. My thoughts on what you might find helpful is to find other YOPD families, knowing others in your situation can be helpful; run, not walk, to the best Movement Disorder Specialist you can find; and look for those Parkinson-specific exercise programs. PWR! Moves has been life-changing for us. http://www.pwr4life.org/ 

 Good wishes to you and your family. NPF offers lots of resources. 

Me too! I even started a PWR program in my area with a friend/trainer!

 

LAD

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Lonnise    60

Thanks for the post.

PWR4life looks very interesting and promising.  Our challenge (my husband was 56 when diagnosed) is that we live in a small county on the eastern shore of Md. and are not near any center that offers this kind of program.  We're a 2 hour car ride from Washington, DC, Philly, Baltimore, etc.  My question for you LAD is how you started a PWR program in your area?  We have a trusted physical therapist and yoga instructor nearby (two different women) that we maybe we could work with?  Thanks in advance for any suggestions.

LHG

 

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Golden01    330

Here are some ideas:

  • Check the PWR! site for therapists anywhere in your state. You may have already done this. If you do find some, call them and ask if they could talk to the therapists close to you and tell them about the benefits of going through the PWR! training. professional-directory
  • Contact physical or occupational therapists in hospitals or outpatient facilities and see if you can interest them in going through PWR! training for therapists. A real opportunity to expand their practice. 
  • Consider going to Tucson (I'd wait until the weather cools off and I live in Arizona) and do a 1:1 session with Becky and her staff. (3-5 day 1:1 physical therapy) Pricey but worth every penny and Tucson is a great place to visit late fall or in the winter. They have just started taking some insurance plans. pwrmembership (look at the lower right hand corner of the web page). 
  • Follow up with LAD about how they started classes in their area and call the PWR! folks, during the 2017 Retreat in Scottsdale, there were several people who had started PWR! Moves, Rock Steady Boxing, and more. They collected names and were going to do an e-mail list of how people got things going. You could probably be added to the list. Some had NPF grants ($5,0000 or so)  and others worked with a PT, boxing gym, trainer, etc., to get the training and then start the classes in their hospital or gym. Best story was one couple whose son-in-law happened to be a personal trainer and worked in a gym with a supportive owner! That precious fellow attended the retreat with his in-laws! I asked if he had a brother!!
  • You can also start with the videos and book on the PWR! website but not as helpful as having a trained therapist. 
  • With a trusted physical therapist and a yoga instructor, you have a good head start! Maybe next year, you could come to the PWR! Retreat and they could come as a volunteer therapist! 
  • Last, but not least, if your husband isn't seeing a Movement Disorder Specialist, you might think about making the drive to one of the cities you. mentioned to see the best one you can find. I believe care from a MDS really does make a difference and they may be able to support you getting community exercise classes in your community. 
  • One more idea, my son lives in Hawaii and when we go to visit, my husband goes to special Parkinson's classes through the YMCA there (we went to more than one location). A community center or hospital in your area might be interested in starting something similar. I don't think they were PWR! trained but the classes were good  (a little less intense as PWR!). 

Good luck! In my humble opinion, Parkinson's is not for sissies! I get tears in my eyes when I watch how hard my husband and my sister work to exercise during the PWR! Retreat. 

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LAD    202
On 7/5/2017 at 10:25 AM, Lonnise said:

Thanks for the post.

PWR4life looks very interesting and promising.  Our challenge (my husband was 56 when diagnosed) is that we live in a small county on the eastern shore of Md. and are not near any center that offers this kind of program.  We're a 2 hour car ride from Washington, DC, Philly, Baltimore, etc.  My question for you LAD is how you started a PWR program in your area?  We have a trusted physical therapist and yoga instructor nearby (two different women) that we maybe we could work with?  Thanks in advance for any suggestions.

LHG

 

As someone said- go to PWR4LIFE.org website and search your zipcode. If the PT you know is willing ask them to look into getting certified...they have workshops all over. I asked my friend & trainer to do it so she could train me and then it evolved into a program for others. I started by buying the book online and a therapist just helped me. What zip code are you? I can look it up for you if you need help. 

 

I also recommend dancing. My husband and I started when my MDS told us to learn the Argentine tango ... you can't start with the AT... we started with ballroom and stayed with it. We got to the tango now! We have fun too! I honestly forgot I have PD when we are busting a move!

 

sorry I already told you to go dance...

 

LAD

Edited by LAD
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LAD    202
2 hours ago, Golden01 said:

Here are some ideas:

  • Check the PWR! site for therapists anywhere in your state. You may have already done this. If you do find some, call them and ask if they could talk to the therapists close to you and tell them about the benefits of going through the PWR! training. professional-directory
  • Contact physical or occupational therapists in hospitals or outpatient facilities and see if you can interest them in going through PWR! training for therapists. A real opportunity to expand their practice. 
  • Consider going to Tucson (I'd wait until the weather cools off and I live in Arizona) and do a 1:1 session with Becky and her staff. (3-5 day 1:1 physical therapy) Pricey but worth every penny and Tucson is a great place to visit late fall or in the winter. They have just started taking some insurance plans. pwrmembership (look at the lower right hand corner of the web page). 
  • Follow up with LAD about how they started classes in their area and call the PWR! folks, during the 2017 Retreat in Scottsdale, there were several people who had started PWR! Moves, Rock Steady Boxing, and more. They collected names and were going to do an e-mail list of how people got things going. You could probably be added to the list. Some had NPF grants ($5,0000 or so)  and others worked with a PT, boxing gym, trainer, etc., to get the training and then start the classes in their hospital or gym. Best story was one couple whose son-in-law happened to be a personal trainer and worked in a gym with a supportive owner! That precious fellow attended the retreat with his in-laws! I asked if he had a brother!!
  • You can also start with the videos and book on the PWR! website but not as helpful as having a trained therapist. 
  • With a trusted physical therapist and a yoga instructor, you have a good head start! Maybe next year, you could come to the PWR! Retreat and they could come as a volunteer therapist! 
  • Last, but not least, if your husband isn't seeing a Movement Disorder Specialist, you might think about making the drive to one of the cities you. mentioned to see the best one you can find. I believe care from a MDS really does make a difference and they may be able to support you getting community exercise classes in your community. 
  • One more idea, my son lives in Hawaii and when we go to visit, my husband goes to special Parkinson's classes through the YMCA there (we went to more than one location). A community center or hospital in your area might be interested in starting something similar. I don't think they were PWR! trained but the classes were good  (a little less intense as PWR!). 

Good luck! In my humble opinion, Parkinson's is not for sissies! I get tears in my eyes when I watch how hard my husband and my sister work to exercise during the PWR! Retreat. 

I want to do the retreat next year ...it is not for sissies true!

 

LAD

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Lonnise    60
9 hours ago, Golden01 said:

Here are some ideas:

  • Check the PWR! site for therapists anywhere in your state. You may have already done this. If you do find some, call them and ask if they could talk to the therapists close to you and tell them about the benefits of going through the PWR! training. professional-directory
  • Contact physical or occupational therapists in hospitals or outpatient facilities and see if you can interest them in going through PWR! training for therapists. A real opportunity to expand their practice. 
  • Consider going to Tucson (I'd wait until the weather cools off and I live in Arizona) and do a 1:1 session with Becky and her staff. (3-5 day 1:1 physical therapy) Pricey but worth every penny and Tucson is a great place to visit late fall or in the winter. They have just started taking some insurance plans. pwrmembership (look at the lower right hand corner of the web page). 
  • Follow up with LAD about how they started classes in their area and call the PWR! folks, during the 2017 Retreat in Scottsdale, there were several people who had started PWR! Moves, Rock Steady Boxing, and more. They collected names and were going to do an e-mail list of how people got things going. You could probably be added to the list. Some had NPF grants ($5,0000 or so)  and others worked with a PT, boxing gym, trainer, etc., to get the training and then start the classes in their hospital or gym. Best story was one couple whose son-in-law happened to be a personal trainer and worked in a gym with a supportive owner! That precious fellow attended the retreat with his in-laws! I asked if he had a brother!!
  • You can also start with the videos and book on the PWR! website but not as helpful as having a trained therapist. 
  • With a trusted physical therapist and a yoga instructor, you have a good head start! Maybe next year, you could come to the PWR! Retreat and they could come as a volunteer therapist! 
  • Last, but not least, if your husband isn't seeing a Movement Disorder Specialist, you might think about making the drive to one of the cities you. mentioned to see the best one you can find. I believe care from a MDS really does make a difference and they may be able to support you getting community exercise classes in your community. 
  • One more idea, my son lives in Hawaii and when we go to visit, my husband goes to special Parkinson's classes through the YMCA there (we went to more than one location). A community center or hospital in your area might be interested in starting something similar. I don't think they were PWR! trained but the classes were good  (a little less intense as PWR!). 

Good luck! In my humble opinion, Parkinson's is not for sissies! I get tears in my eyes when I watch how hard my husband and my sister work to exercise during the PWR! Retreat. 

Thanks so much for such great information. I have checked the PWR! Website and looked up "nearby" options. Two hours away isn't nearby enough for us.  The MDS we finally got in to see and like (at Johns Hopkins) moved to Las Vegas, didn't mean to scare him off Ha !😝 !  We are now researching another MDS now, pain in the "arm",  but we won't stop looking until we're satisfied

Next up is to contact my PT  I've talked a little to my Yoga Instructor

I would LOVE to do dancing, but it's not a passion my husband shares.  I keep trying though.

Again thanks for all the great info and insight.  Best wishes for continued worthwhile living, loving, and laughter.

I'll you know how our progress goes when there's progress.

LHG

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LAD    202
9 hours ago, Lonnise said:

Thanks so much for such great information. I have checked the PWR! Website and looked up "nearby" options. Two hours away isn't nearby enough for us.  The MDS we finally got in to see and like (at Johns Hopkins) moved to Las Vegas, didn't mean to scare him off Ha !😝 !  We are now researching another MDS now, pain in the "arm",  but we won't stop looking until we're satisfied

Next up is to contact my PT  I've talked a little to my Yoga Instructor

I would LOVE to do dancing, but it's not a passion my husband shares.  I keep trying though.

Again thanks for all the great info and insight.  Best wishes for continued worthwhile living, loving, and laughter.

I'll you know how our progress goes when there's progress.

LHG

we never danced either ...we take private lessons...however we now will dance in public and we can fool everyone:)

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