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Rebecca2z

Shameful - weeks, or months, to get an appointment to see a neurologist

49 posts in this topic

Hi Rebecca,

 

I am 33 and have YOPD. First off I have been following your dad's story here and am grateful for the quick updates you provided. You may have saw I too gave a like to the post BeausMom couldn't. I guess they limit likes to keep spammers at bay... oh well.

 

For Your question about cognitive issues in PD I'll share my exp:

 

Of all my symptoms of PD, short term memory loss, occassional confussion, and what I call 'brain fog' had me the most concerned. When I first saw my current neuro he told me that if I have PD the meds Sinemet 25/100 (aka carbidopa levodopa) will help with my symtoms. To which I asked specifically about cognitive issues, his reply was "maybe." So I did some digging and asked around, found very little info about medication impact on cognitive issues. A couple sorces seemed to indicate that Sinemet does not help with them. The longer I was on Sinemet the more relief it gave me for my symptoms, each week it seemed to be more effective and on new symptoms. Last of all about 5 weeks into starting Sinemet my brain fog and memory loss seemed to eb, and now at this point most days I feel like my normal cognitive self again. I still have moments during my "off" times where it takes me a moment longer to remember things or figure something out. Basically my theory is some of my PD symptoms are more immediate and respond to meds kicking and wearing off more quickly (tremor, pain...), other symptoms are more due lack of dopamine over time and take a build up of meds before resolving but also don't wear off as quickly. This all said we all respond to PD and PD meds differently, but there is hope for all your fathers symptoms to find some relief, and just because a med resolves something quickly doesn't mean it won't eventually resolve more things in time. Keep encouraging him you have the right approach and PD is managable, different meds work for dif PWP so don't let him lose hope if med doesn't work long term either, he may just need to try something else.

 

So glad he is home again, and yes please continue to read and post here you're always welcome. Plus I want to hear all about his appt in Gainesville.

 

Thanks

 

Richard

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Thank You so much for the great info and link johnnys, I think your right something like this would be very helpful.

Your also right that this type of worrying is like a habit and I strongly believe there is a way to control it better, so thank you for this

info. The anti psychotics my dad was on were taken away at yesterday's appointment, thankfully---- and it does make sense that those would cause a lot of brain fog and cog issues.

I am very happy to hear this method is helping you and you are not "put away" somewhere !!!!!  Thank you for sharing this 'technique' with me.

I also agree it's very important to see a panel of doctors. So I hope my father can see Dr. Okun on the Feb 26th scheduled appointment.

 

Hi Richard,

aww geeze I am still so new to this that I had to look up what YOPD was.... Very Sorry you are in this boat ! But happy to hear you say you are feeling like your old self most days.... Thanks for pressing that like button! ( that needs to be fixed so we can push that baby more!)

 

I can't tell you how much your post means to me, especially because like you I am not finding a lot of info on the subject of meds and brain fog / cog issues.

I hope so much he like you have, see's some improvement in this area, I would be grateful if he see's even a tiny bit, but I really appreciate your encouragement and tips on being patient for meds to work and the possibility if they don't work there are others to try.

Your message is exactly what I was 'fishing' for, thank you SOOOooooo Much !

 

I will keep you posted on his visit with Dr. Okun, everything is pending on him being able to travel from Maine to Fla... fingers and toes crossed he improves on the meds.

 

Hugs,

Rebecca

 
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Thanks Golden, well I didn't get very far today. Father is still in a mental place and they don't think he should be there but can't find a place for him. Mother is worried he will still try to harm himself, and wants to know how we can be sure he won't (and I can't say for sure he won't)

 

My mother doesn't want him in some Alzheimers lock down ward, but is scared to have him go to a skilled nursing place,( which only be until we can get my father into a neurologist  and his meds are worked with) so I have a wall here that I am not sure how to scale.

 

I have offered them to come and live with me and offered to pay to have my brother or sister fly with them, so far they haven't accepted offer. My husband and I have a nice mother in law apt attached to our house and I have 2 Parkinson centers of excellence and 1NPF care center really close.. At this point I don't think my father can fly anyways...

Yes I am thrilled my sister is back there as my mother is too.

 

Hey Golden is there different types of dopamine that they give or are they all the same?

 

Thank you kindly for your support-it means a great deal, I am so happy to hear you had some help through your ups and downs, it really must have helped you and your family. Thank you for sharing !

 

hugs,

Rebecca

This really sounds like the best possible answer, you need to try your best to get them to accept it. Of course you will be taking on a lot, but then you know that, and in some ways it will be easier than trying to deal third hand and so far away. Also do you have Medical power of attn? or health care proxy for him and for your mother as well? Try hard to get that as well. Best of luck to you and your family.

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Thanks McCall, I think your suggestions are wonderful. No my father and mother don't have a health care directive.

I sent my parents the forms to fill out, but I don't think they have had time to do them. They just moved from this camp they live in for the summer into an

apartment today. So hopefully things will calm down and my father can relax, which will give my mother time to address these things.

 

My mother is 82 and boy is she burned out. My sister flew back there a couple of weeks ago and she has been a big help- she lets the rest us know when we can push and when we can't. My mother needs to bring in some support, she doesn't want to though, I am pushing for her to do this. This is just too hard for her.

Thanks for your kind post! What a nightmare this all is.

Hugs,

Rebecca

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Glad to hear things are settling down. A calm environment and strong emotional support from others is my Rx for everyone in your family!

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That step to bring in some help can be a hard one. Glad your Dad is home! Maybe they would accept some help for "just awhile". We've found the home nursing services wonderful once we could get them in the door! Facing that again next week with my mother-in-law. My husband just set it up and told her when they would come, when she objects, we just remind her the "physical therapists at the hospital said it was really important you have a  home safety check. So far, so good. 

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Hmmm, This is a good idea Golden, I could tell my parents it's like a safety check, I think this might work.

I don't understand why someone wouldn't want home visits and respite care. I love my nurse who comes into my home.

I love my house keeper too. The more the merrier !

 

I really want someone to help my mother and plus I think it would be good to have someone outside of the family evaluate things, like maybe this is going to be too rough for my 82 year old mother, or maybe they can let her know this can work but only if you take some help.

 

I also would like my father to get some PT. You know this Parkinson seemed to come on so fast, I know he's probably had it for years but no one really noticed. He was riding his bike 8 miles every other day and then he stopped cause his vision is so bad from glaucoma, and I swear about 2 weeks of not riding his bike is when this really bloomed. I would like to see him get on a stationary bike, it would be good for his body but even better for his head.

Thanks for listening Golden and thanks for the tips !

hugs,

Rebecca

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Rebecca, I was just reading through everything going on and am glad you found this Group, Golden and Beau's Mom where the best support and gave some of the best advise I have gotten right after I was DXed in April of this year.

 

 I saw in an earlier post that your Dad is a Bow Hunter, I would encourage continuing to shoot archery, I have a range in my back yard and it is great therapy. My Dad who is 73 and also has PD (DX was 26 years ago)  still shoots from a wheel chair at his local range. Something about drawing that Bow back makes all the tremors stop instantly.

 

 I'm really glad things sound like they are getting better for you and your family, and hope to continue following your story.

 

Donald Ennis

Don+archery+2013.jpg That's my Dad with his bow and Wheelchair.

Edited by Donald Ennis
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Oh Wow, You totally rock Donald ! That is such a great photo and story, but most of all it is

inspiring ! I hope you don't mind I copied it to my desk top, so I can mail it to myself and then it will be on my smart phone and

then I can send it to my brothers smart phone in Maine and he can show it to my dad. ....LOL ~ (ok so there is probably an easier way to get the image to my smart phone, but this is the only way I know.) Also if You have PD and your trying to figure that all out don't worry, those of us without PD don't even get what I wrote !

 

My father will LOVE this !! I am even thinking he could go to an indoor range.

I am all over this... got to google indoor range, have to tell brother... blah blah blah...... Thank You so much for taking the time to write such a kind post

and putting that photo of your dad up.

WOW your Dad has had this for 26 years ! What a great story, just goes to show great things are still possible with PD and always have hope.

I agree I am very happy I found this group, my new friends in here have been extremely helpful and saved me lots of time.

 

Tell your father what a great man he is and how he is helping my own father ! Ha, How cool is that !

Hugs,

Rebecca
 

Edited by Rebecca2z

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Donald - Thank you for the wonderful picture and story about your Dad! What an inspiration!! 

 

Rebecca - I can't begin to tell you how much PT helps my husband, especially PT specifically for people with PD (BIG, PWR! Moves, etc.). Depending on how your Dad  does, you might think about the PWR! retreat next year in Arizona. Here's the link: http://www.pwr4life.org/ (look for exercise events). My sister and my husband (both have PD) along with my brother-in-law and I will be there. This will be my sister's 4th PWR! Retreat and the 3rd for my husband. We consider it an essential "tune-up" for their PD. Right now, my husband is having some back problems and he can't do his PD exercises like he usually does, his PD symptoms (especially tremor are off the wall right now). He and I are both looking forward to solving the back problems so he can get back to his PD specific exercise program. 

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Thanks Golden, Today I was looking on the internet for some kind of PT for PD in the Bangor Maine area, not finding much.

Going to call the aging center and see what they say, and maybe my father's PCP can help.

 

I would love for him to go to this retreat, but right now we can't even get him on the plane to go to Fla, he has an apt with Dr. Okin in Feb but

I just don't know if he can do it. See it's not the shaking or stiffness causing him issues, - the meds are working really well on that stuff, it's the mental issues. He is with it and memory is great but he is focusing on his meds, freaking out about taking them on time. Everything else seems normal mentally except this stuff about the pills. He will see a new doctor who works with mental issues Dec 3rd.... but I just don't know if we can get his mind back on track.

I feel so bad cause he is normal in his thinking, which makes this so hard. He does seem very apathetic - more so then depressed. Very sad that he realizes his thinking is not right and he is frightened. He can't even sit and watch TV. He just stares at the med sheet and his watch all day long.

 

I am just not seeing much that can be done, for this. I wish he didn't realize what was happening to him, it makes this so painful to watch.

 

But I haven't given up totally... Just I don't see many people in here with these issues so it's hard to know where this is going and if there is any treatment. I feel like he is being tormented and is suffering as well as my mother, she is suffering too.

I am going to call the aging agency on Monday and get a social worker to visit them in their new apartment. I would like to know what she thinks. Maybe she can help my mother..

keep you posted, thanks for the link, I think many will be interested in here with something like that. I am so pleased that you can go and make it a family affair- it's wonderful you have such great support. I am thankful for you being in here giving support. You have been so helpful !

 

Hugs,

Rebecca

Edited by Rebecca2z

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But I haven't given up totally... Just I don't see many people in here with these issues so it's hard to know where this is going and if there is any treatment.

 

Rebecca hi from me too !

Most people in here have young onset PD. Some of us-me included-were diagnosed in our early to mid 30s, others even earlier...That's why you don't see many patients with your dad's mental issues. Don't get alarmed, this doesn't mean your father has a worse form of PD or anything. your father's PD seems harder to treat, due to age-related issues complicating things....I'm sure that with proper medication adjustment your father will feel a lot better. this might take some time, so you have to be patient.

 

I understand your pain and frustration for your dad-you indeed are a wonderful daughter-but don't forget to be thankful as well. For all the productive disease-free decades he's lived thus far. Thankful he was lucky enough to get PD in his 80s and not in his prime. Science says that we would all get Parkinson's if we lived long enough.

 

Best of  luck!

Christie

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You are right, you and your family are facing a lot of day-to-day challenges. Here is a link to some PT/OTs from Maine that have been trained in the "BIG" program for people with PD. Both my husband and sister went through the "BIG" program and found it very helpful. Even if your Dad is ready for intense PT, they will have ways to help him move more which may help with the mental side of all of this as well. Maybe he will begin to focus on his PT exercises instead of when to take the medicines! Not sure changing focus from one thing to another will be helpful but will be a change for your Mom!

 

http://www.lsvtglobal.com/clinicians

 

Good luck as you continue to search for ways to help your parents. As Christie says, you are a wonderful daughter!

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Awww thanks Christie, I really appreciate your encouragement and support. You know I was thinking after I wrote my last post

one reason I don't see many in here struggling with these mental issues is because they can't get in here and put their thoughts to paper

-so to speak. Unless they have someone advocating for them and trying to learn about this I wouldn't see them. There must be lots of people

who would benefit from a forum but they can't mentally or physically take part in one.

 

Oh gosh I hope my issues with my Dad aren't making the YOPD-ers feel bad.... Maybe I shouldn't post in here, what do you all think ? Maybe I should delete my posts ? Sorry I never thought about it.... gulp.....

 

Golden thanks once again for a great link, I just know the PT is going to help, at least get him out of the house and

doing something where he has to push himself a little. He has to have something to reach for, mentally and physically.

and yes...lol... wouldn't it be nice for my mother to get a break from the pill OCD.

 

I wish it wasn't the weekend, I am anxious to make some calls. First thing Monday I am going to get some kind of social or case worker

to actually drive over to my parents house and evaluate what is going on, and see what she thinks. Then I am getting PT lined up.

There needs to be some routines put in place. My sister made him go for a walk yesterday and he is walking just fine she said.

 

So my saga continues and you guys are wonderful about letting me vent and whine and giving me great suggestions.

 

Thanks to all of you!

hugs,

Rebecca

Edited by Rebecca2z

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Rebecca, you are more than welcome here. The purpose of this forum is to provide support for all PwP (and related diseases) and their families. We all try to do that, the best way we can.

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You know I was thinking after I wrote my last post

one reason I don't see many in here struggling with these mental issues is because they can't get in here and put their thoughts to paper

-so to speak. Unless they have someone advocating for them and trying to learn about this I wouldn't see them. There must be lots of people

who would benefit from a forum but they can't mentally or physically take part in one.

 

Oh gosh I hope my issues with my Dad aren't making the YOPD-ers feel bad.... Maybe I shouldn't post in here, what do you all think ? Maybe I should delete my posts ? Sorry I never thought about it.... gulp.....

 

Thanks to all of you!

hugs,

Rebecca

I don't think the cognitive issue of PD are that cut and dry. Like other symptoms there are better times and worse times. Besides I hope that when I reach a staget where my abilities are so diminished my children will be old enough to contribute and caring enough (like you for your father) to want to.

 

As one of the younger members of this forum and still in the early stages of PD I think I can speak for PW YOPD. We can choose to read the post we want to read. Often I will skip the ones talking about incontinence and constipation, and generally over things that perferably happen in the bathroom. Not that I have a weak stomach, or can't handle the idea of those symtoms. In fact I have had early signs of those myself. But really I find that unpleasant enough that I try not to relive my own yet live someone else ordeal. Point being I can censor the forum well enough to take in what I need when I need it. Under no circumstance should you feel the need to censor yourself or not ask about (or gripe in some case) the concerns with your fathers issues. Also YOPD comes on differently than traditional PD, and all PWP don't get all the same bag of symptoms. Hopefully that makes sense, point is post what you need to post. I for one will use my cognitive ability to help all PWP with my story, opinion, and tips for handling PD for so long as I am able to read and post. It might be one of the few positive things for my PD can do for others. Also there is no sense in fearing my future with PD as tomorrow I could get hit by a bus, I must handle each day as it comes, and perhaps one day I'll awake to learn of a cure instead. If you really feel uncomfortable talking (posting) about challenges of PD to those of us with it, there is a Caregivers section to this forum. I for one rarely read those posts as I am not a caregiver or in need of one, and feel I don't have much to contribute there. Hopefully with all I said you know I am not suggesting you should only post there. Remember your questions and input is always welcome.

 

Richard

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Thanks Christie, I sure have gotten some amazing support in here, thank you !

 

Richard, Your post has reminded me of something very important and that was your statement  "Like other symptoms there are better times and worse times"  Important to remember this especially when your in the thick of a bad day.

 

I also appreciate your point about people can choose to read a post or not. I am in a forum for my own health issues and many of us are at different levels, sometimes I don't read the ones that are scary, sometimes I don't want to know what could happen. My main disease is so rare there really isn't a forum for that but I am in a lupus one.

( I have APECED - other wise known as appies.. lol, Immune Deficiency and Lupus - ) So yes I too pick and choose what I read in 'my' forums. (But still I would never want to bum anyone out)

 

 I haven't gone into the care taking section YET, because, I am not care-taking at this point. And well my father is 3,000 miles away and I am working on getting him good medical care and trying to learn about the ups and down of PD to help him fight.   I wouldn't be any where near where I am in my understanding of PD without all the wonderful people on this forum. It's a journey and I truly appreciate you all allowing me to walk it with you.

 

 I will say there has been a positive improvement in my Dad, he's not as depressed ~ at least on this day, so the lexapro maybe is finally doing something. But just to remind everyone my father is 84 years old and as someone mentioned to me in another post he has had a wonderful life with many many good years. and I expect he will have a few more still to come ~ especially with your help !

 

Thank You Richard for your kind and thoughtful post.
Hugs,
Rebecca

Edited by Rebecca2z

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Rebecca,

 As was previously stated, you are welcome here. We all have diffrent symptoms and back stories, We all deal with these issues diffrently. The mental issues associates with PD vary from person to person. I'm in my Early 40's and have very few cognative issues as yet. My father has some cognative issues, and my mother, who was DX last year in her 70's is in better shape then both of us. yet we can all learn something from other's experiences. I for one am glad your here, the more voices the louder we can make a noise that will effect change.

Edited by Donald Ennis
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Thank You Donald for your kind post. I am so happy your not dealing with any of the mental issues and I think a lot of my fathers issues has to do with the fact he is 84.

I bet with your family situation you must be thinking PD is inherited, you all must be a wealth of information and support for one another.

 

Thank you again for taking the time post and I think you are so right the more voices = change !

Hugs,

Rebecca

Edited by Rebecca2z

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Rebecca,

 The question of genetic PD comes up with my family often, however I am the 5th of 8 children and the only one of my siblings with symptoms so far. If it is genetic the odds are I got this from my Dad's side, which we don't know alot about. Of all cases of PD there are only about 10% that are known to be genetic, if DXed with YOPD (Before age 50) the odds change to about 60%, with both I and my Dad having YOPD the odds are pretty good that we have a genetic form of PD but it changes little. We have had more researchers approach us when they find out there are 3 of us in the same family in 2 diffrent generation with PD, I have had more blood drawn and sent to research labs then I can count.

 

I would suspect that your father's advanced age probably does play a big part in his mental status.

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Thanks for your post Donald, I really was thinking you must have doctors or researchers wanting to look into yours and your families DNA.

I think my fathers mother (my grandmother) had PD, but it was never dx. She lived to be 105 though ! Of course I am hoping it's not genetic, I have enough

poor health and mine is related to DNA, I have 4 siblings and 3 of us have immune issues.

I guess we all have some kind of monkey on our backs !

I was wondering how young a person has to be in order for the PD to be called YOPD, thanks for that info.

Be well !

Hugs,

Rebecca

Edited by Rebecca2z

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I was wondering how young a person has to be in order for the PD to be called YOPD, thanks for that info.

 

 

"The term YOPD refers to patients with a PD onset between the ages of 21 and 40,[1] although subjects younger than 50 years might be considered as having early onset PD" http://www.ncbi.nlm.nih.gov/pubmed/22180646

 

The arbitrary definition of "young onset Parkinson's disease" for  cases of  idiopathic Parkinson's disease beginning between age 21-40 years was proposed by Quinn et al in 1987.  http://www.ncbi.nlm.nih.gov/pubmed/3504266

Edited by christie

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Nice definitions on that one Christie.  The only problem I see with those ages, (21-40) is that we are looking at onset of symptoms and not an the actual Diagnoses. As an example for myself, I was DXed in April of this year, at age 42, however looking back I can remember thing from years past that I could say where early symptoms. Since the definition is based on the onset and not the DX of PD, it is extremely arbitrary. I consider myself Young Onset as does my doctor.

Edited by Donald Ennis

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