Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

How often do you see you neuro? What questions to ask?


  • Please log in to reply
28 replies to this topic

#1 Didi

Didi

    Advanced Member

  • Members
  • PipPipPip
  • 83 posts

Posted 09 May 2014 - 12:43 PM

My husband has his follow up appointment with the Neurologist next Tuesday. We are trying to come up with a list of questions. Any ideas on things we should ask? I am going to ask him if he thinks it would be a good idea to see an MDS eventually. Since we are still in the early stages, and the DAT scan seems pretty conclusive that this is PD, we are not in a great hurry to see an MDS. Do you all see any reason to see one early in the disease, if you are sure of the Dx? I would also like to ask him how many PD patients he has treated, and how many he has that are as young as my husband - he is 50. But I am hoping these questions won't make him defensive or anything. I guess this way we get to feel out what he is really like and if he is a good fit for us.

I also wonder how often we will see him. Neuro's are way overbooked around here and their time is limited. How often do you see your Neuro? Also, since we pretty much decided to wait a little longer before trying meds - what if we don't see him for 6 months but in 4 months my husband goes downhill and wants to start meds. I know nothing happens really quickly in PD, so it's not usually an emergency but having to wait months seems like it could make things difficult. A friend of mine said her Mom's PD neuro is available by email for med questions, etc.. -- it sounds very tempting to try to switch to her. How available are your neurologists? And is that important?



#2 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,514 posts
  • LocationSeattle, WA

Posted 09 May 2014 - 01:08 PM

I highly recommend seeing an MDS as early as possible. My original neurologist didn't even suggest a baseline evaluation by PT and OT, which are critical to following progression. A PT who specifically knows about PD is the best person to learn exactly what exercises you can do to prevent deterioration of or even regain arm swing, balance, correct posture, etc.

 

Shocking to me was the fact that my neurologist had never heard of MDS.

 

Dianne


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#3 Didi

Didi

    Advanced Member

  • Members
  • PipPipPip
  • 83 posts

Posted 09 May 2014 - 01:27 PM

Thanks, Dianne,

Thank you Dianne

I'm adding definitely adding this to my list of questions. I think PT would be great, but I'm not sure the neuro would think so, this early in the process. Posture, gait, and arm swing, are definitely issues my husband deals with, and he struggles with shoulder and back pain that I think stems from some of this. But since it isn't severe and may not be that noticeable in the quick walk across the exam room, I'm not sure if the neuro will go for it. But it is definitely worth a try. Then again, maybe things are more noticeable to him than I think, since he diagnosed him at the first visit --he was actually more surprised that we picked up on the problems, because they were quite subtle. I think he might not understand that what might seem quite subtle during a 10 minute office exam can be more of an issue in daily life. He could see the bradykinesia and rigidity on exam but seemed a little surprised that those of us who were not trained neurologists watching him could see it. I also think it has progressed some since Feb. since my 17 year old daughter notices it now, where she hadn't before. 

 

We live in a small city - but there is one MDS, not sure if he is any good. Also our insurance isn't the greatest, so that may be a problem.

I guess I should start by calling the only MDS in our city to see if he takes our insurance. Who knows it may take years to get in to see him, since it takes months to see a regular neuro around here.

I was surprised when I mentioned to my husband's GP about seeing an MDS, that the GP had never heard of one, and his Grandma had had PD. But that is really shocking that a neurologist had never heard of an MDS.

 

Again-- how often did you see your neuro  or MDS in the beginning?



#4 McCall

McCall

    Advanced Member

  • Members
  • PipPipPip
  • 78 posts

Posted 09 May 2014 - 02:19 PM

My husband was diagnoses in Feb of 2012 by his primary care Dr. I immediately got him an apt with the head of Movement Disorders at Brigham and Womens in Boston. He has been seeing my husband about every 4 mo.

 

I strongly suggest you find a MDS. there is no reason to see both, as the MDS is a Neurologist but one that specializes.

 

It is amazing how many Neurologists don't know much about PD let alone MSA, PSP, CBD etc. I would not waste my time with them.



#5 SherryKnuth

SherryKnuth

    Advanced Member

  • Members
  • PipPipPip
  • 46 posts

Posted 09 May 2014 - 04:55 PM

I saw my MD Neuro two months after my initial dx.   I will see her again in six months.  I am blessed beyond measure to have the MD Neuro that I have.  She & her nurses have helped me navigate through PD.  You will want one that is available to you. 



#6 PatriotM

PatriotM

    Advanced Member

  • Members
  • PipPipPip
  • 305 posts

Posted 09 May 2014 - 06:13 PM

I see a local neurologist and am happy with him at this point.  My appointments are currently scheduled 6 months apart, but he told me to call if I needed to see him before the 6 months.

 

If I wanted to see a MDS, I would have to travel to the big city, which is an hour away.  I've already been to the neurology clinic at a major teaching university (for my late stage lyme disease) and I didn't like it.  There is definitely something to be said for seeing a MDS that specializes in diseases like PD, but there is also something to be said for seeing a hometown neurologist.



#7 dinnes

dinnes

    Advanced Member

  • Members
  • PipPipPip
  • 37 posts

Posted 09 May 2014 - 07:40 PM

I still see a Neurologist every 6 months, more often if needed. It's a very busy office also. I started to look up MDSs in the area. Didn't find any, but will look into it again. My Neurologist seems to know PD, but I not convinced she's experienced in YOPD. I am able to send a message online or leave a message by phone with the Dr. If she out not in the office for a few days, another Dr will respond. I really appreciate this contact, since it can be a few months to get an appointment, unless it's urgent.



#8 StrkL

StrkL

    Advanced Member

  • Members
  • PipPipPip
  • 39 posts
  • LocationColorado

Posted 14 May 2014 - 02:47 PM

My neurologist is an MDS at the neurology clinic of a major teaching university.  She's about an hour away.  And I am extremely grateful to have her.  My first neurologist (who specialized in epilepsy), in town, had me try a couple of sinemet per day.  That did nothing, so he concluded I didn't have PD.  A year later I went  to my current neuro (it took a couple of months to get an appointment), and she had me try half a tablet per day the first week, one tablet per day the second week, one and a half tablets per day the third week, and so on until I was taking four a day after eight weeks.  The meds did absolutely nothing until the fifth week, when I was taking two and a half per day.  Then it was like a switch being thrown.

 

With her help, I eventually got on six sinemet per day (two at a time, three times daily), plus a couple of other meds, and I have no tremor.  (Before diagnosis my tremor was so bad I was almost unable to feed myself.)  When I am on (which is most of the day) I can walk normally most of the time, and even run occasionally.  Before I couldn't walk more than a few hundred feet, even with a cane.  Even when I am off, I can write and type almost as well as ever.  I have my life back.

 

I see her once a year now, but I see a Nurse Practitioner who works with her every three months.  And during those appointments, my neuro usually drops by for a few minutes.  I've been seeing her for seven years now, and couldn't be happier with the care she's given me.

 

It may take some time to find a good MDS, but it's well worth it. In my case it's been the difference between a fairly normal life and being close to an invalid.


StrkL

#9 Didi

Didi

    Advanced Member

  • Members
  • PipPipPip
  • 83 posts

Posted 14 May 2014 - 07:00 PM

Well, we had our appointment with the Neuro. I was frustrated because they made this follow appt. for us in February but told us because they were so busy they couldn't give us a time yet until it got closer to the day of the appointment (they were overbooking and planning on some cancellations). Well I kept calling as it got closer and they still didn't know. I called the morning before the appointment and she still couldn't give me a time but said she would call by the end of the day. My husband and I both work -- so this makes it doubly difficult to plan and know when to take off work. They finally called mid-day with an appointment time. I complained a little at the appointment and the Neuro didn't apologize at all - I asked if that happens often and his answer was no (but the way his office staff acted, I think it's pretty common) I totally understand being put on a cancellation list - or waiting if you call for an emergency or "squeeze me in soon" appointment. But this was a follow up appt that they "scheduled" not one I asked for. My thoughts are that this guy is just too way too busy. He seems to overbook his appointments and gets lots of cancellations-- I don't get it.

 

The neuro was OK when my husband told him he hadn't tried the Azilect yet. But he had a totally different approach to encouraging my husband to take it this time. At our first visit he told us he should take Azilect to slow progression and when I asked if it would help his symptoms his answer was only minimally. This time I told him I had read up on Azilect and it does not seem to be conclusive whether it actually slows progression -- he just smiled and shook his head --didn't comment but then proceeded to tell my husband that it would help him with his symptoms. He told him his style is to wait for the stronger meds until symptoms are more severe so they won't run out of time that they are effective. He felt my husband symptoms were very mild - but his exam was extremely short - -only walking he had him do was to walk like on a tightrope for a few steps to check his balance.

 

The entire visit was about 10 minutes. He told us all the tests he had run (bloodwork, mri's, eeg's..) were normal except his Dat Scan which was consistent with PD. I asked him about seeing an MDS. He said that was our decision, but if we went to see an MDS then we would need to switch over to be treated by the MDS.  He said that PD is treated differently by each neuro, and they all have their own style, and it gets too confusing to have more than one neuro consulting on a patient. He said he had treated many PD patients and mentioned again to me that he had one PD patient that he treats who had PD for 20 years and although he is on lots of medication is doing well. I asked him how many PD patients he had treated that were young as my husband (50) and he admitted not too many. He said it was pretty rare that young. He seemed a little put off that I was asking about an MDS but I don't want to judge him.

 

I asked about Physical Therapy for my husbands shoulder pain and stiffness and he said if we wanted he could write a script for PT, but he felt my husband should try the Azilect first.

 

Overall, I wasn't super impressed with this Neuro and I am inclined to have my husband go to an MDS. There is only one in our city. I did check, and they do take our insurance. My husband is kind of weary of docs and not sure he wants to try all over again. Then he mentioned - what if the MDS has a worse bedside manner than this neuro (the unknown part of the equation) I only could find 2 reviews on this MDS online but they were positive.

 

I asked the neuro for copies of all the tests. I think what I want to do is ask my husband's GP for a referral to the MDS (my insurance doesn't need referrals but the MDS requires it). Then our 1st neuro need not know about the visit. Then if my husband really hates the MDS we could still go back to the first neuro -- does that sound like it could get us into any trouble? Also, if we are going to get an appointment with a new MDS should my husband hold off on taking the Azilect until he sees the MDS - -so that he can see him without any meds? I'm thinking that will depend on how long it takes to get in with one.

THis neuro wanted to see him back in 3 months to see how the Azilect worked. I'm hoping we could get in with the MDS before that but not sure.



#10 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,514 posts
  • LocationSeattle, WA

Posted 14 May 2014 - 10:55 PM

Didi,

 

I sure hope you can get in to the MDS. I have no idea about his bedside manner, but they are much more knowledgeable! It sounds like this current neuro is inconsistent in what he says and is saying, "It's my way or the highway." Many, many people see an MDS once or twice a year, especially if they have to travel, and the local neuro happily works with the MDS and follows the patient locally. My first neuro, who had never heard of an MDS, was excited that I was going and wanted all the details. Some doctors egos are so big they can't see the patient.

 

Thanks for letting us know how things went.

 

Dianne


Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#11 Trying hard

Trying hard

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • LocationNew Mexico

Posted 15 May 2014 - 09:46 PM

Didi

As a caregiver I agree with Beau's mom you need a MDS, it is soooo important, we started out with neurologists, and it wasn't until we got to  a MDS that things for my DH really started to turn around, it makes such a difference, not to mention the reduced stress.  I would think that any good neurologist would not have a problem, and you should never feel rushed or uncomfortable, that is the last thing any PWP or their caregiver needs.  All of the visits we have with our MDS are 45 minutes to an hour, and the initial visit was 4 hours.  I'm one of those people who believe that it is never to early to get physical therapy,   It certainly won't hurt, and will teach the basic but so important stretching.

Wishing you all the best and hugs to you! 

Keep us posted.



#12 Didi

Didi

    Advanced Member

  • Members
  • PipPipPip
  • 83 posts

Posted 16 May 2014 - 07:05 AM

Thanks so much Dianne and New Normal,

You have me fully convinced that my husband see and MDS. and ... I think I almost have my husband convinced. Before we went to the Neuro appointment he agreed that it would be best to see experts. But now he seems to be having second thoughts -- of course like most of us, and especially men, he hates going to the doctor, so just the anxiety of starting again with another doc is causing him to think "is it really necessary".  Especially because I want to go to the center that is 1 and half hours away since I found out they take our insurance. There is one MDS in the city closest to us -- about a 45 minute commute-- but it is a small office with only one Neurologist. About 1 1/2 hours away there is a large MDS center with 7 neurologists and they are listed on the NPF as a center of excellence. They seem to be doing a lot of research and most of the Neuros are listed in publications with research on PD and movement disorders. My son, who is 22 and a nursing student(hoping now to become med student) told his Dad it's a "no brainer" where to go.  But I know my husband is thinking about the inconvenience of the long drive - longer time off work for both of us, etc. But really, being in a family business, my husband's brothers will be fine with him taking extra time off, if it means the best care. It will be harder for me to get time off because I am now a nursing student. But, I feel it will be worth it. What do you all think? Will this be a problem down the road having an MDS 1 1/2 hours away, seeing the local neuro is not willing to see us anymore if we go to the MDS. I mean, if my husband ever needs to be hospitalized for anything would it be a problem to not have a local neuro? My husband is 50 with no other health conditions, but of course you never know if he might end up hospitalized for something. Should we go with the MDS that is further away since it's much bigger? I know "bigger" is not always better, but I can't figure out a way to get personal recommendations on either place. Not many patient reviews online. I think I'll post on here, to see if anyone on here lives in the Central New York area.



#13 Didi

Didi

    Advanced Member

  • Members
  • PipPipPip
  • 83 posts

Posted 16 May 2014 - 09:00 AM

Sorry, Trying Hard,  it's been a busy week -- I meant  say Thank you to Diane and Trying Hard not New Normal - although New Normal has been an encouragement on here for me before --so I got confused!

I really appreciate your input as a fellow spouse!



#14 Trying hard

Trying hard

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • LocationNew Mexico

Posted 16 May 2014 - 04:39 PM

Hi Didi

Go the 11/2 hours, for us it was a 1800 mile round trip, and no regrets.  It too was a center of excellence, and even though we know longer make the trip due to his PD at this point (stage 4), trying to get back to stage 3, his team of Doctors told us we are welcome back at any time, and his neurologist that he has now knows that.  Sounds like you did your homework, go with that gut feeling you have.  The support he has from work is the same as I had, in the long run an hour and a half is nothing compared to having the best.  My DH had just turned forty and it took the medical team here way to long to do anything and then when they did what a nightmare.  I did what you did at that point and did my research, no regrets on all the driving.  He had every excuse not to do it.  I won't fly, okay we drive.  What about the dogs we can't leave them alone, or board then.  Okay so we take them.  I was prepared, he went kicking and screaming the first trip, after that he was no trouble.  And...after 10+years I miss each and everyone of those MDS that he had.  If I had any problems or questions I could call them, when they suggested DBS, they did the surgery.  I don't believe NPF hands out Center of Excellence to just anyone.  Didi, go with your gut feeling.  If  your not happy, try another MDS at the center, they work for you. Post here, I'm sure someone in the NY area will know, and you might also get in touch with local PD support groups.

Good luck and Hugs to you.



#15 Didi

Didi

    Advanced Member

  • Members
  • PipPipPip
  • 83 posts

Posted 17 May 2014 - 09:58 AM

Thank you Trying hard! Your encouragement means so much to me!!

Well, I don't think he'll be kicking and screaming ... But... this morning I mentioned to him that I had received all his test results from the local neurologist and I thought he ought to pray about a decision as to switching to an MDS and which one. He kind of sarcastically answered -- "well I guess you've already decided what you want me to do and you've even started talking to everyone about it (meaning my 22 year old son)" and  he seemed pretty  down about it. I apologized if he felt like I was pushing him, told him I hadn't spoken to anyone about it but one of our sons, and told him I didn't want to make him to anything he didn't want to do. He softened then and said "you know what's better for me anyway".

 

He told me he just felt that since it was still so early in diagnosis and his symptoms are still pretty mild, that it isn't necessary to go to great lengths to find an expert and maybe he should just try the meds the first doc prescribed and not go to an MDS until things got bad. I think he kind of feels since there is nothing really out there to stop or slow down PD, what's the point, if they are just going to prescribe the same meds. I still feel that it would be best for his quality of life to start out with experts, so I think I'll still -- drag him to the MDS. :) Really, I'm kind of joking, I'm sure you understand what I mean. We have a great relationship and he's not going to be mad at me or anything.

 

He actually asks me to make the decisions about whether he should take meds or not, etc.. I don't really like making those kind of decisions for him -- and honestly it is something we'll decide together. I have experience with medical terms, because I deal with my own chronic illness, because I am a nursing student, and because I just enjoy science, anatomy and physiology, etc.. So hubby kind of looks to me for direction. I feel that is a big responsibility. I am the only reason he got this diagnosis in the first place -- I'm the one who finally dragged him along to a doc because I knew something was wrong. Actually, I had already in my mind figured out he had PD from his symptoms and I told him my suspicions in the car on the way to the first neuro appointment. When we left that first appointment with a diagnosis of PD and a prescription for Azilect,  hubby said maybe I should be a neurologist. After we found out, I really felt pretty guilty, because his symptoms were pretty mild and since there is nothing to slow progression maybe I should of left well enough alone and he could of had some more time not knowing he had PD. But I felt I had to take him to the doc because what if I was wrong? What if it was something different from PD -- something that could be fixed if found early enough -- and if I hadn't said anything I would have felt awful for waiting. I asked him if he was upset that I had pushed him to find out what was wrong and he said "no" , although  sometimes I think he wished he didn't know-- he obviously had enough symptoms that he knew something wasn't right either and this way he wasn't wondering what was wrong with him. He's just not one to go to a doc for anything. In fact he didn't even have a PCP at the time -- hadn't had one since his pediatrician when he was a kid (for real, and he's 50)  -- so I guess going to a University MDS is a big step for him.

 

I just hope traveling to an MDS doesn't backfire - I so much want it to be positive. I did post on here and amazingly there are 2 people on this forum that live in the Central New York area. They seem to have a little experience at both places -- Syracuse and Rochester, so I'm trying to get some recommendations from them. One poster mentioned that the docs at the research center are often too busy doing research to have time to see patients. This concerns me a little. Like I said, I want to get this right because my husband is definitely not going to want to continue doc hopping to find the perfect doc-- I feel like I have to get it right the first time! I'm making it a matter of prayer.

 

I'm so sorry that your husband is at stage 4. I will pray for you both that he can improve back to stage 3 or better! From your post, I think you said he was diagnosed at age 40 and has had PD for 10 or more years? Is that right? That still has you both very young. Do you have children? Do you work, or care for him full time? I hope I'm not asking too many personal questions. It is just a question I have in my mind about our future. We are not in a great place financially. I stayed home to homeschool my children for 25 years (working only part time), my husband doesn't make a huge income and so we have quite a bit of debt.  Because my husband works for a family business, we have no retirement, disability insurance, or any savings. So I'm wondering what will be in our future. I am going back to school for nursing, so that I will be able to bring in a better income if he gets to the point where he can't work. But I have my own illness that can flare at anytime and that is always an unknown. But I always wonder -- if he gets so he can't work, won't I have to be home caring for him? How will I work to support us, if I have to be home caring for him? At ages 47 and 50 we are quite a ways off from Social Security and that is usually not enough to live on. I was just wondering what you've experienced since you are both young. I chose nursing because it is a very flexible degree and you can do a lot with it, thinking maybe if I am ill myself, or have to be home caring for him that I could do some sort of telecommute job-- phone triage or something. I do have 4 wonderful children, one is 26 married, with a good job, another on his way to being a nurse practitioner or a physician. I know my children will care for us if needed, so I'm not scared, I just don't want to burden them if there is anything I can do to prepare -- so I'm back in school. Besides, with he and I both dealing with a chronic illness, the things I learn in nursing school can't help but give me more knowledge for our own health care.

 

Well anyway - it's so helpful to just talk to someone about my fears. Thanks for sharing what you have learned from being further down the road. I will keep you in my prayers.



#16 Trying hard

Trying hard

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • LocationNew Mexico

Posted 17 May 2014 - 08:43 PM

Didi;

Wow, Slow down and take a deep breath!  Relaxed?  Good, now remember how that feels.  PD is a team effort, at least for us, and it will be for the two of you too.  However, that being said, sometimes you will have to take the lead, he is busy as all men are at realizing that this is something he can't fix, and it is all overwhelming to him, just as it is to you, yet in a different way, we women nurture, take care of, and you are doing what needs to be done, finding and getting your team in place.  It takes time, lots of research, lots of talking, you have time, so please slow down.  The most important thing right now,( and I'm speaking from my own 20-20 hindsight) is to find a good MDS, research and teaching is a good thing, cutting edge, sure they may be busy doing other things, but if my experience in Houston taught me anything was that though they may have a thousand things going on at the moment you were in the room you were the most important.  All of the Doctors in Houston published, lectured, traveled the world for conferences, but out of the 10 years only twice were the appointments rescheduled.  If I hadn't done my home work I wouldn't even have known what all they did.  It is good to ask the questions Didi, but keep in mind this is long term progressive disease, so you need, and your husband needs routine, no STRESS, and if you have to go through a couple of Doctors now, now would be better than later. 

Please tell him that you can slow down the progression, I'm here to tell you that had my husband dead last July, he is not dead.

They wanted him placed in a skilled nursing facility last Dec, four days before Christmas, he is not in skilled nursing, He walked with assistance Friday after not having walked in months.  No one will ever tell me nothing can be done, well they tell me I just decided not to listen,  You see I know my husband better than he knows himself, he may argue about that.

There are three things that I think are more important to PD than anything else.  Absolutely no stress, exercise, and a spouse that knows when to step in, and when to step out.  On more than one occasion I have had to be the nag, other times I have had to go hide and cry my eyes out.

It is better that you did what you did, sooner is better, but accepting it takes time for the both of you, that is just the way the process works, you may get to the acceptance and fight sooner than he, or maybe the other way around.  He will need to lean on you at times, and there will be times you will need to lean on him.  Right now he is leaning on you, and I wouldn't be honest if I didn't tell you that that will  happen from time to time.



#17 Trying hard

Trying hard

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • LocationNew Mexico

Posted 17 May 2014 - 08:58 PM

Didi

Hit post to soon, more later

Hugs to you



#18 Didi

Didi

    Advanced Member

  • Members
  • PipPipPip
  • 83 posts

Posted 18 May 2014 - 10:31 AM

Thanks, Trying Hard -- I'm sorry if I sounded anxious or even neurotic - -really I'm not. I'm actually having a Lupus type flare right now and not feeling very well, so maybe that's coming out in my writing, though I didn't mean it to. Sorry! I can't do much at the moment but lay be in bed and surf and post online. So I think my very wordy post made me sound kind of frantic. It was just sort of encouraging to speak to someone who has been down the road, and be able to ask questions, and I think I got to typing too much.

 

I'm so happy your husband is improving and has begun walking again. Thanks so much for all your advice. Yes it will be a team effort for us as well! I'm doing my homework on a good MDS and being patient with my husband - I really don't want him to feel like I'm pushing him on this decision to see an MDS.



#19 Trying hard

Trying hard

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • LocationNew Mexico

Posted 18 May 2014 - 11:08 PM

I did not think you were anxious, neurotic, or anything else, you just sounded like you were trying to do it all at once, wasn't sure you were breathing.  Since I read you last post I remembered how I needed that same thing, just to talk.  It was a busy day today, a good day,

He had trouble getting out of bed this am, but he did it.  He got himself into bed without help.  So today was not a day I just had to live through, so instead of doing much of anything, I'm still sitting here in the quiet of the evening, It was a good day.  That is why I haven't finished my post from the other night.  All I can really say tonight is that God works in mysterious ways, just wish I could figure out the why. 

Hang in there Didi, promise I will answer all your questions.

Hugs to you



#20 Trying hard

Trying hard

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • LocationNew Mexico

Posted 19 May 2014 - 09:56 PM

Good evening Didi,

My DH was not diagnosed officially with PD till mid 50's.  I first noticed something was wrong the year he turned 40, but he refused to even listen to me.  He was a type A personality, constantly going with many things going on at the same time. He began slowly having difficulty processing all the information that he had never had trouble with before.  Fatigue, and he began to worry about everything.  I was trained in the mental health profession, brain injuries etc so  being a trained observer is probably why I saw those things, but I knew something wasn't right and of coarse my first reaction was that he had a brain tumor, not good because I ended up  scared out of my mind.  I couldn't force him to see any Doctor, so I decided to wait and watch.  Next thing I knew severe muscle spasms in both his legs would almost cripple him.  He did go to the doc for that, he was put on naproxen.  To shorten this, years went by, he got stiffer, his ability to process information slowed, he couldn't concentrate long enough to get lesson  plans done  , he was a teacher, among other things.  He was  having trouble with smooth movement, and I don't know how else to describe.  At 45 he would walk like a statue, and being around him, in the bedroom was like his body was disconnected from his soul, his body didn't respond normally.  It was the first time I either heard or felt tremors in his lungs, To this day I can't explain it other than that.  Because of his sexual performance he was off to the doc.  Diagnosed with hypogonism, and the doc concluded that was what was causing all of his problems.  Take the hormones, here is some Viagra and tell your wife to quit her worry.  I was furious with the doc, but since I wasn't there I couldn't be sure he'd even brought up everything.  I don't want to drag all of this out but eventually he was in such bad shape that a diagnosis would become necessary.  They ranged from PD, manganese poisoning, brain tumor.  Yet still then he only had a slight tremor in the tip only of his index finger.  I could still either feel it or hear it in his lungs, doc couldn't hear it.  He was 52 at hat point, and the doc finally realized that I hadn't been crazy, but it would still be another three years before we would have a real diagnosis and real medication.  He is 62 now, and my regret is that I didn't do more, I'm not sure the outcome would have been any different, because to many docs just do no believe that PD hits the young.  I believe the earlier that a diagnosis takes place the better, because in the long run you are in a better physical and mental state to deal with all the emotions.  Never question if you did the right thing by taking him to the doc, it was. 

Have dogs to walk, so until another day

Hugs to you


Edited by Trying hard, 19 May 2014 - 10:14 PM.





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users