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Rebecca2z

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

49 posts in this topic

I am in complete shock, all this great info and support about Parkinson every where on the internet and it takes

weeks, or months, to get an appointment to see a neurologist ? My father sits in a mental hospital getting no help for

what they suspect is PD. ( saw a neuro 2 weeks ago and was told he had the disease, put him on meds, then got sick herself and can't see any of her patients and no fill in doctor)

 

Seriously this is so wrong - I am so flipping mad ! My fathers legs and arms losing muscle tone, he has lost all hope, and is depressed. No doctor seeing him other then a hospital shrink who knows nothing about PD, so she took my father off his meds. He just lays in bed 24/7. No physical therapy - no doctor working on medication. His mind is just fine, totally with it, just very depressed and hopeless. As far as I can tell depression is often part of the problem with PD, I feel what he needs is a good neru/movement disorder doctor, a PT and shrink. How in the world does anyone with this disease get medical care for these problems. It seems like there needs to be a team of doctors not just one neuro... I don't know I am so confused...

 

I tell him there is hope and they need to tweak his meds, he say's no doctor has told him there is hope, which is right they didn't, my mother was there, in fact he walked out of the doctors office with no info sheet - no nothing about what PD even was. My parents are 84, they don't know what this is, they don't use the internet.. ERRRrrrrrrr

 

No one getting him out of bed, not even once - No stockings on his legs for circulation, no grab bars in the bathroom so he can help himself to the toilet. He is so upset because there is no bib, so food is all over his clothes. I made thousands of calls trying to get help for him but there is no one in this area of Maine.

I have an apt for him with Dr. Okun in Fla but that won't be until end of Feb. Really ??? 3 months before he can be seen. He may not even make that apt, as he is stuck in Maine, in a mental hospital for trying to harm himself.

 

Sorry just needed to vent..

Edited by Rebecca2z

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We're listening.

 

Yes doctors are people too, their not perfect like rest of us.  I've seen a couple who graduated with these three guys...

 

Edited by Luthersfaith

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You are a wonderful daughter. The frustration of not being able to get care must be overwhelming. I think especially when people are older and when  problems are complicated (like PD and mental health illnesses), it seems that people don't respond as quickly as we need them too. Sending good thoughts your way. 

 

These may be places you've already tried to help and they may be long shots but I know you will leave no stone unturned to get help for your Dad. 

 

Maine state health authority for behavioral health services- http://www.maine.gov/dhhs/samhs/mentalhealth/

 

Provider List by  County - http://www.maine.gov/dhhs/samhs/mentalhealth/providers/index.html

 

Grievance Process for recipients of mental health services - http://www.maine.gov/dhhs/samhs/mentalhealth/grievance-mh/index.html

 

Maine Mental Health Partners - http://www.memhp.org/

 

I don't know about Maine but do know in many states that medical services (like for the PD) and the mental health services are not as integrated as they should be. It may be you have to work through two systems at the same time to get him to the right folks to treat him. 

 

One more long shot, any chance your Dad was a Veteran? The VA often leads the way in PD care. 

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Two more long shots:

 

1-Did your Dad's mental health symptoms come on suddenly or is it a problem that has been there for a long time? A few years ago, a friend of mine in another state was in a similar situation with her dad (a stroke, not PD). He developed severe depression, became a threat to himself and others, and had to be admitted to a mental health facility some distance from their home. While hospitalized, he developed (or they discovered) an infection of some kind. Once that was treated with antibiotics, the mental health symptoms went away and he returned home. 

 

2-Are the medical folks paying close attention to the medication list in your NPF "Aware in Care" kit?  Maybe hand the list to every  nurse, doctor, or other person you meet in the hospital. Some of the medications can make things so much worse for the person with PD. 

 

Here's a link to a newsletter that was helpful to us last year: http://www.pdf.org/fall12_going_hospital

Edited by Golden01
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Golden,

 

Very good point about the infection.  My mother-in-law has had both of her knees replaced and following the surgeries she developed an undetectable infection.  The hospital wrote her off as just being senile.  She becomes completely incoherent when this happens.  Each time, we had to fight with the hospital to get her some antibiotics.  Within a day, she returned to her normal state.  We call it "Mad Cow Disease".

 

Dave

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oh wow, you guys are the best- you got me fired up ! Golden those links are excellent and no I didn't have them all, so thank you for this, I mean really thank you so much!

Yes my Dad was a vet and they have a beautiful assisted living place in Bangor, I need to see what they offer, if we can't get him home.

 

Golden my dad's depression has been with him for a couple of years and the hand shaking and shuffly feet started about 2 months ago.

and interesting that you mention the infection, the mental hospital found a deep wound on his leg yesterday and they cultured it and found bacteria - apparently today they are going to look into this wound better...

and NO the mental health place is NOT looking at his meds closely, they took him off his PD meds and then forgot to put him back on them until last night.

The mental hospital ( just a nurse) told my sister ( who just flew back to Maine from Montana)  that they don't know what to do for my dad, they have never had an 84 year old man there. See the patients that are there have drug abuse issues mostly.

 

Thus no grab bars or shower chairs and such.  My mom wants him home but she is worried about him hurting himself again. Part of him wants to off himself but a much much bigger part of him wants to live and one thing that is worrying him is getting those meds on time. I told him I will get him a talking alarm clock that dispenses the exact does at the exact time and mother will see to your pills, the pill situation is just too overwhelming for him - to the point he can't handle life.

 

Ok I am off armed with some awesome info from you... THANK YOU from the bottom of my heart ! I feel so good that I can come here for help as I learn about all this!

xxoo

Rebecca

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You are a great daughter and it is wonderful your sister is there from Montana. We've had several long distance care situations over the past few years and find having some "boots on the ground" always helps us figure out the story. 

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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

 

 

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oh thank you golden for the link about staying in the hospital, I sent it to my sister...

that was very helpful and I see the added stress of being in the hospital for someone with Parkinson makes symptoms worse.

Good to know - important to know !

 

Also thank you for the link you gave me to mental health in Maine - this is very much appreciated, I am going to call them tomorrow to see what advice they can offer, I was hoping my mother would be ok about father going to  skilled nursing, but she isn't, so

I better find out what options are there in mental health for a person with Parkinson.

 

I wouldn't have known about this if you hadn't posted it... BIG HELP - be careful I am going to send you back there to fix all this ! lol

Edited by Rebecca2z

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Thank You Luthersfaith - loved your humor and support ! Need that in times like this !

hugs,

Rebecca

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Rebecca,

 

As a social worker whose focus was direct practice mental health, and a PWP with my depression to deal with, I know there is at least one social worker on staff. If the psych docs aren't listening, try appealing to the social worker to at least get a neurologist to the psych hospital for a consult. Some psych meds actually make PD worse. Having personally experienced being in an independent psych unit, a psych unit in a hospital, and a skilled nursing facility, I far prefer the in-hospital psych unit. If that's where your dad is, there is no reason they can't ask for a neurology consult. At any rate, a good social worker will advocate for the patient's best interests not just mentally, but physically, socially, family-wise, and spiritually.  If he is in an independent facility, see of they can transfer him to an in-hospital or geriatric psych unit. They are in way over their heads and are ethically and legally bound to admit it and find him the least restrictive but highest level of care needed.

 

God bless!

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You are welcome. I'd go if I could but my mother-in-law is with us recovering from hip surgery and my husband with PD has a wound on his leg that isn't healing (fell off  his bike more than a month ago) so we were back to the wound specialist for a fourth visit today. Got my hands full here but keep my NPF Aware in Care drug list handy! And I as I say - somebody has got to go to work!

 

Good luck  you are working hard at this. Beau's Mom always has excellent advice. 

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Thank you  SOooooo much Beau's Mom, I copy and pasted your post to my sister and hope since she is back there, this info

will help. I think what you wrote is EXCELLENT and really gives my family some direction. Seriously you have no idea how much your post is giving me some direction... I 'll keep you posted

I really think your advice is going to help us.

 

I am feeling so overwhelmed, I went into this forum under 'ask the pharmacist' and man after reading every single page (14 pages) on meds

I just broke down. It seems so complicated and my parents are in their 80's , how in the world are they going to manage this.

Plus being in their 80's I wonder how well an 84 year old man can tolerate these drugs. plus it seems doctors don't really care about working with 80 year old's.

 

But the drugs, wow- I am in so far over my head and so is my family. I think my dad knows this, he is so sharp and he keeps saying it's just too late and too complicated. Now I am thinking he is right.

 

I just can't stop crying, he's so old and the medical help just isn't there and my 82 year old mother can't do his meds and plus she has to log how he is doing on them, when they wear off, etc... I feel if you don't do this there is no way to get my father comfortable, but feel it;'s too much for her, maybe she is stronger then I think.. so many doubts..

 

Really heart breaking - 2 years ago this man was 82 and he took down an 2,000 pound elk ( with his bow) in Montana and hauled it out of the woods with his atv, he at 83 years old rode his bike every other day, 8 miles . He walked 2 miles every day and these are the things he did for the last 30 years or more. He may be in his 80's but he was more active then a 40 year old. Now he is just laying in a bed, tormented, no tv, no radio, no reading and he loved books. I am sorry I am in a bit of a pity party here, thanks for listening.  Thanks for helping. Maybe everyone goes through this and maybe being 84 doesn't make this any different. I still have so much to learn.

Hope you guys will hang in here with me.

 

Thanks Golden too, look at all you have on your plate and yet you come in here and offer help and support, what a gift you are ! I am humbled by your

kindness and selfless giving to others.

 

I will attempt to put one foot in front of the other and try again tomorrow to make a difference.

 

hugs,

Rebecca

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While the drugs seems complicated, they can make all the difference once you get to a Movement Disorder Specialist (MDS) that gets the right ones, in the right amounts, at the right time for your Dad. The fact that he was so active will be a plus. You are right about one foot in front of the other. I have friends who will say "take a day at a time". I find figuring out just the next five minutes sometimes is all that I can do but it works for me. 

 

I overlooked the question you'd asked me about dopamine-related drugs. Dr. Okun or the "Ask a Pharmacist" is your best spot for those questions.My husband is not on L-dopa. We have found that his MDS always can help us figure out the medication questions. For example, he had a bad response to Mirapex (flu-like symptoms, flat affect, memory problems) and she took him off it after six weeks. I've heard of others who had a similar bad response but their doctors kept them out in for much longer. My husband was not sleeping and the MDS simply recommended taking one medicine earlier (by 6 pm) and it solved the problem. He was on another medicine (Selegilene) where he did have hallucinations but we didn't realize that was what was causing them (he'd see people standing around in our bedroom at night, they weren't real scary to him and we just thought it was part of PD!). When Azilect came out and he switched to that the people went away. 

 

For my husband, PD-specific exercise makes a real difference. Hopefully, a good PT can help your Dad get up and moving as you get all this sorted out. One foot in front of the other. Your folks are lucky to have you and your sister. 

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Thank You Golden, thank you for your insight and experience with the meds, so helpful.

Well my father is still in a mental hospital but they are now being very rude and want him out, say they can't do anything for him.

 

They did put him in a room with handi-cap bars today. ( thankfully) They have gotten pretty aggressive with my sister and  mother and told them in no uncertain terms visiting hours are at night only, 5-7:00. My mother can't drive at night (she's 82) so they are allowing my mother to visit just for a very short time, (20 min) during the day. I guess they don't realize my sister is doing the driving while visiting back there. My  mother doesn't want to wait until night time to see her husband, so hard for her  to judge how he is doing on the drugs and all kinds of other things. So this is getting pretty dicey. Trying to get him into a skilled nursing place -but hasn't happened yet. You know the disease is bad enough with out the all the problems of finding a doctor.

 

I set up an apt in Portland Maine to see a MDS for Thursday, I just hope my father can make the trip, it's 2 hours down and 2 hours back plus the 2 hour apt.

They will give my father a day pass. (Mother is still scared to bring him home because he might try to hurt himself again.)

So that is where I am at today!

 

 what I have learned so far-   is don't get PD in the state of Maine !

hugs,

Rebecca

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Hope the visit to the MDS tomorrow is fruitful for your folks. Maybe they will be able to arrange a different setting for him to be treated that will provide all the care he needs.

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I would hit like about your pending visit to the MDS, but according to the monitors here I've used up my quota of likes for the day. Which is a little like trying to limit hope, encouragement, love and enthusiasm. Someone must have been in a rare mood the day that decision was made. At any rate, sounds like you're headed down the right road. Let us know how it turns out. I'll be rooting for you!

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I wasn't out of my likes yet for today so I did one from Beau's Mom and me! Hope the day goes well for all. 

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LOL you two 'quack' me up ! Thanks for the likes ! Yeah I agree Beau's mom that the person who made the rule about limited 'likes' must have been having an off day.. So sweet of you golden to give up one of yours !

 

Ok so my Dad had his appointment today in Portland with Dr. Drasby, and my family loved him, brother, sister and mother went with him. The appointment went awesome. The doctor said he didn't and shouldn't be in the mental hospital and called that hospital and checked my dad out right on the spot! How cool is that! Also told my parents that they might be able to go to Fla in Dec, or maybe even sooner.

 

Dr. Drasby gave them tons of info and compassion. I wrote the doctor the night before his appointment.. below is what I wrote, I wanted to try to make sure my father and family got the very most they could from their appointment. The doctor upped his lexapro and the dopamine drug. ....and told my family they could call him any time. So my Dad is home and I am doing the happy dance !  Also the dopamine my father has been taking for about a week is already making a difference in his 'sticky' feet, they are not sticking to the floor so much.

My father is still full of anxiety and frets a whole lot more then we'd like. Kinda drives ya nuts when your around him all the time, he's always had this problem of worrying but not to this level, the PD seems to have amplified this.

 

But I remain hopeful that he will continue to improve, I know he will face many many challenges in the days, months and years to come. But hopefully as these changes take place it won't hit him so hard as the dx did. 

Anyway way thank you for all your wonderful support, I am not going anywhere though, I like it in here ! I still will need you, but I hope now to be able to provide you and others with the compassion and heartfelt support you have given me. Plus I want to keep you posted about my father's visit with Dr. Okun in Fla on Feb 26th ( if my parents can make that trip)

 

(Dr. Drasby always has his fluffy white dog Chester with him)

Dear Dr. Drasby,Thank you (and Chester!)for seeing my father today. He is 84 and was dx with PD just acouple of weeks ago.When he was dx he was simply told he has PD and not told what that is or that it can be managed.He became very very depressed after that appointment. He told me that "no doctor has said that thisis manageable or treatable" so he is assuming the worst. (HE DOESN'T USE THE INTERNET)He has such strong beliefs in what doctors tell him. So my family is hoping that you can at the veryleast say while PD is complicated there is hope and just be patient while the meds get adjusted or kick in.We (the family) feel having a medical doctor that he holds in such high esteem say something positive aboutthe management of PD, will have a huge effect on his will to fight harder.We appreciate anything you can do to encourage him and our mother (his care-taker) to have hope.Warmest Regards,Rebecca 
Edited by Rebecca2z
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Rebecca,

 

You truly are a remarkable daughter .  I can only hope that my girls can provide half the compassion in my later years (is a long way off for me) as you are for your parents.  Keep up the good work and keep us posted on how your father is doing.  Does the good doctor have an idea of what stage your Dad's Parkinson's is in?

 

Dave

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Aww thanks Dave, I am just sure your girls will always be there for you !

 

I had that question about what stage is my father's PD on my list for my family to ask the doctor and I don't know if it got asked. I talked to my sister tonight and she was so dog tired she hardly had a voice. They all got up at 4 in the morning to make the appointment. (almost 3 hour drive) So I will ask tomorrow. I have a feeling the doctor didn't touch on this area too much, maybe not because it's not positive. I still hardly know anything about PD, but it does seem that my fathers cognition is fairly compromised, I mean he is still real sharp, has good use of language, but then there is the constant fretting and worrying and constant talking about every little problem. It is driving my family nuts. I don't know if this will be helped with the meds or not, but I am guessing not. Maybe someone can enlighten me about this.

 

My father is 84 years old so he is slowing up in spite of PD. I read an excellent Primer on PD, I found the info in this primer the best I have read and there is a lot about the stages and I think he is in the middle. The primer was pretty clear about how this ends. I would think if my Father was in the early stage the doctor would have pointed it out.

How I wish they would just come up with a cure for this ! But  I am thankful that they even have some meds that help.

 

I 'll let you know when I find out, thanks for reminding me.... I think it's important to know this as one can better plan for the future.

 

I need to re-read the primer... here is a link to it...... Really I think this is excellent in uderstanding the complexities  of PD http://www.muschealth.com/neurosciences/about/movementdisorders/forms/Primer_on_PD.pdf

 

hugs,

Rebecca

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Beautiful note! It sounds like you found your Dad a terrific doctor. I love he part about checking him out of the hospital on the spot!! Good for you. I am also impressed with the fact your Dad will be seeing Dr. Okun in Florida in February. You've found him the best care possible. You are a wonderful daughter. 

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Thanks Golden,

I got very lucky that my parents home is near Gainsville Fla, (40 min away) while I was looking at the different doctors on line who specilize in PD, I came across some of Dr. Okun's published journal articles and I thought, hmmm I like this guy, wonder where he is located, couldn't believe my lucky stars when I saw he was in Gainsville Fla. !

hugs,

R

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Hi rebecca.

So sorry about your father.It takes on the average today over a year to diagnosis PD by a doctor.My solution to that is go see a panel of PD aptients and you might get a answer alot quicker and more accuarte.Just my opinion..lol

 

You also mentioned your father is being treated by  a psychiatrist.You said he has beena chronic worrier.Well thats the problem his worry habits .Some call the mental illness.There is hope.Ive been a group leader in Recovery International now

since 1994.Our motto is "no hopeless case".

 

Some anti psychotics can cause a form of parkinson.They should go away after the drugs are stopped.

 

You said your father has a good mind ,very good for him. he should pick up on the method quickthen and improve.

 

I have PD stage 2.I know Id had been put away along time ago without this method now I live a peaceful and productive life.I to have a ingrained "worry Habit" under control now.

 

their web site is www.lowselfhelpsystems.org

Hope this helps.

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