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


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#21 Didi

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Posted 20 May 2014 - 08:12 PM

Some of your story sounds so familiar -- walking like a statue :). My husbands major symptoms are stiffness and rigidity. The shuffle is what clued me in the most though. I can always hear him coming anywhere in the house because of his shuffle. He shuffles much worse barefoot in the house then when outside walking. I think because he doesn't think or concentrate on walking so much when home. I never know if I should remind him to try to overcome it some( like he does when out and about), or just let him be - it must be so frustrating for him, seems like he should just be able to relax at home and not "think" about how he's walking. But I am not sure if I'm right or not.  As for the bedroom -- he is not a statue there and there are no problems at all in that regard -- quite the opposite, the problems would be more on my end. I can definitely resonate with what you said about smooth movement -- that is so amazingly similar to what I said to the Neurologist, I didn't know how to describe it except to say that his movements were mechanical --not fluid.

 

I'm so sorry your husband went misdiagnosed for so long, and that the doc didn't believe you. We had the opposite happen. The PCP did mention PD quickly(my husband didn't even hear him say it, but I did), but I think he was thinking more MS, and sent him to a neuro. But the neurologist diagnosed him at the first visit -- I was shocked! It was what I had been thinking for months but I never though that a doc would agree and diagnose him so quickly. When we left the office my husband said : "See, you should have been a neurologist"

 

Got to run,  Hugs back to you



#22 Trying hard

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Posted 20 May 2014 - 10:09 PM

If your DH doesn't object I would remind him about the walking, because you don't want him to get in the habit, now is the time in the early stages to "retrain" the brain,  there are lots of information about exercise programs that he can do at the home when he has time.  Remember sooner is always better.  There are some things that you can do on days that aren't so good for you, order all of the free info that you can.  NPF has lots of booklets and they are all very good.   Some of the things like the walking that you notice actually feels normal and natural to most PWP so with my DH all the therapists and myself included have always told him to make the movement bigger than what he thinks, generally that gets them make more of a normal gait.  I'm glad things are great in the bedroom. :) 

I am now a full time caregiver, have been since Nov of 2011, he didn't require full time, but he had had the DBS surgery and I didn't think it was fair to my fellow employees to have to fill in so much since I didn't know how many trips would be needed for adjusting.  As it turned out he had a lot of falling after DBS so he went into intense PT and we made 5-6 trips in 2012 to Houston.  Then the settings were so high that in 2013 he would need another battery replacement, then he almost died, so now I am full time.  I suspect I will continue to be, as much as I hope and pray that I won't be, but I have to be realistic too.

He worked with all his problems for a lot of years, up until he was 52.  I think he would have continued to work, and do all the volunteer work that he did, but I noticed that the less stress he had the better he functioned.  It wasn't an easy decision for him, for me it was absolutely the right thing, even if it meant we would have to do without a lot of things.  So because of the jobs he had held he was able to take early retirement, which meant we would do with about half of what he would have gotten if he'd worked to 65. We still  had no diagnosis, but he was having to many non-motor problems, and without knowing what was going on there wasn't anything else for us to do.  He continued with full time volunteer work till his diagnosis, then he came home and shut out the world while he dealt with his diagnosis.  I guess for me I just wish research on stress and fatigue would be done.  The  amazing part was that once the stress from work was alleviated he improved so much, it was amazing and he had so much less fatigue that he enjoyed his volunteer work.

Take care of the both of you

Hugs



#23 New normal

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Posted 22 May 2014 - 09:59 PM

Trying hard and Didi...

There are few times I am at a loss for words...and this is one of them. My heart is full, and I want to convey so much to both of you, yet, words seem so inadequate. You are true true heroes to support your spouses as you do. I admire and respect each of you....and when you begin to question your own strength, please remember your selfless service to your loved one has already proven your worth....you both walk the walk...24/7...you do for them, worry for them, and cry for them.

I hope you both make time for yourselves and find a source of pleasure and energy outside of the dynamics of PD.

Specifically, Didi, it is so obvious you and yr husband are still in that first stage of the grieving process for your previous life before PD. It is fresh in my mind, as I was in it just a few weeks ago. The questioning, the searching for alternative treatment...the obsessive compulsion to make the right decision...I am telling you....as others told me....that truly is causing more stress than anything else. It is painful, but it is something you have to experience....I was just there....and then one day...with Christie's help....i cd no longer deny my symptoms...I can no longer deny I must take the meds to have a quality of life....and, so, in a way, it is a good thing...I have transitioned to the nxt stage of grief...acceptance.... beau's mom made an outstanding post explaining the grief process as it relates to PD diagnosis...

And she is so correct....I think PD is a continuum of loss...a continuum of grief for each new loss each day as we see our capacity diminish....

But, there will be a day....and trying hard has been there....when the mania of resistance to the truth and the desire to find a miracle cure transcends to a numb like acceptance of reality......and, Didii....as odd as it sounds, it brings relief. So my counsel is to discuss more with your husband the reality, and less of discussion of how to discredit doctors or test results ....cuz he is feeling the deterioration, and the more energy that is expended in denial, the more energy is taken from him to manage his pain....his pain of grieving for his loss.

I kinda disagree with the notion to remind him he is walking stiff....and especially note he walks different when he is "out and about"...ya see, I can arise from bed with a very stiff "penguin walk" and later walk 1 1/2 hours on the desert with no symptoms.....it is as frustrating for us as it is for the observers...we never know when we can walk or not walk...it has nothing to do withour "will" or ability...and, Didi, it can change in hours....it can change in minutes...I can walk fluidly into a store, and then be limping in minutes. It would be frustrating to me if someone were to mention the change....trust me, we all know what our bodies are doing....or not doing...

Well, per usual, I prove I am NOT at a loss for words, and I apologize for going on so...I am emotional right now after reading the exchange between you and trying hard....I am very grateful to you both for telling your stories....I am grateful you both post here...you provide a different perspective...and your love for your husbands is evident.....and it strengthens me to hear from both of you.

You ladies are creating your own legacies independent of the PD lurking in your lives...and the family who surrounds you...the young and old are learning from your example....the impact you have on others will endure for generations. God bless you.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#24 Trying hard

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Posted 23 May 2014 - 10:36 PM

Hi New normal,

Reminding my DH about his walk was not about my not knowing what was going on, I knew what was going on and that he had no control over it.  When I watched as his arm stopped swinging, and he carried it higher and higher, it felt normal to him, in fact he would say to me; "What! you want me to walk like a monkey".  What had become abnormal now felt normal.  The same can happen with gait, and I completely understand what you are saying about the changes.  With my DH it was about open communication, because as a wife, if he isn't talking to me I don't know what is going on.  I certainly wouldn't want him frustrated or angry.  It is not easy being a spouse of someone with PD, we can't express our emotions because we don't have PD, yet we do.  We shield from stress, and allow them  time to process their diagnosis, while we quietly deal with our own grief.  Remember when someone says something to you don't assume they mean to get you frustrated or angry,  as much as you have problems with your gait, we have  problems trying to figure out if it is the time to say something, and if we do what words do we use.  I believe that the sooner in PD that communications begin the sooner the living starts with the new journey that is laid in front of you.  All that being said the PWP is the one who is important and if they wish not to be reminded then I do think that the family should respect their wish. 

Both you New normal and Didi are at the beginning of a new journey and in it you will both discover you are much stronger than you believe you are today.  It certainly wasn't a journey either myself or my DH would have chosen, but you will witness things, feel things, and share things.  There will be days that you will want to throw in the towel but you won't because you know tomorrow will be better, and that there is this huge thing called love.

Hugs to you both



#25 New normal

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Posted 25 May 2014 - 05:29 PM

Thanks, Trying hard....I am trying hard. I really appreciate your perspective.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#26 johnnys

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Posted 26 May 2014 - 08:13 AM

Awhile ago a doctor who has advanced PD gave a excellent speech.I have been to quite a few nerologists especialy MDS now and somewhat disappointed.

I know what it feels like to be walking fine on minute and stumbling the next.For me turns definitly bring it on alot.

Im thinking now about having the doctor who has advanced pd take over my care.

What better choice wouldn't you say.



#27 Trying hard

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Posted 26 May 2014 - 02:57 PM

I think that is a great idea johnnys, no one can understand what it is like than another person with PD!  We who don't have PD read, listen and watch, but alas we cannot feel what you feel.

You have nothing to loose and everything to gain, good luck!



#28 New normal

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Posted 28 May 2014 - 04:17 AM

Likewise, no one can understand the pain experienced by the care giver unless he has gone thru it. I was the primary care giver to my son who was head injured in an auto accident ..... I would have taken his pain in a heart beat...it is harder to watch a loved one than to carry the burden ..... Especially when they emotionally are struggling......so I REALLY do appreciate the participation of the care givers in the forum, to remind us to look outside ourselves and recognize the impact PD has on those we love.

PD has a way of consuming the senses....and it is so easy to become self absorbed....and that is my greatest fear....so again, Didi, Trying Hard, Miracleseeker, and all the others....thank you for reminding us of the essential partnership between PWP and their care givers....we can never ever sufficiently thank you enuf....and you never get adequate recognition.....in this life......:)
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: tremors rt & lft side, rt leg drag whn tired, balance, cognitive/ speech issues, apathy
Live, laugh, and be happy.

#29 Didi

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Posted 29 May 2014 - 01:38 PM

Thank you, Trying Hard and New Normal, and everyone else's comments.

To New Normal: I'm not sure what you meant about me discrediting Dr.'s or test results -- can't quite figure out what comment gave that impression -- I had no problems at all with our current neuro until he got offended about my asking to see an MDS. Even then, I understand his perspective, he is an older doc-- feels every Doc has his own style of treating PD, and was not interested in input from an MDS. We were accepting of that, but when I asked if he had treated PD patients as young as my husband he admitted -- very few, "it's rare" he answered. That's when we decided we'd like to see an MDS.  I don't know if that is what you mean about discrediting him -- I sure didn't mean to - -he seems like a fine doc -- we'd just like someone with a little more experience treating younger PD patients.

 

As for my husband already knowing when he isn't walking correctly - -I beg to differ a little. I was the one who noticed my husband's gait issues and bradykinesia, long before he did -- probably a year or more ago. But it took almost 4-5 months for me to talk to him about it, and then he started realizing it himself. Likewise - -my husband can tell when I am ready to have a flare, before I can, he can also tell me if I am going to have a seizure at night( I usually have them when falling asleep) It always amazed me how he was more in tune with my body than I was. He tells me he can see it in my eyes. Truly, when you are married -- "The 2 shall become 1"

 

Your insights into being the caregiver vs. being the one cared for are discerning and come from true understanding. I am so sorry for your son, and what you and your family must have been through. I am sure you would have taken his pain in a heartbeat. Honestly, I have had my moments, of questioning the Lord as to why both of us had to succumb to illness a few years apart, at relatively young ages. But everything happens for a reason, and we have both learned so much. Now we have both seen things from both perspectives(the one who is ill and the caregiver) and in that way are able to help each other even more. In addition, the trials and raindrops in our lives bring us to depend more on our Savior, and help us to long for heaven even more, for truly, this world is not our home! (we are just passing through)

 

Trying Hard: Thank you so very much for sharing your story and your wisdom. I am so sorry that DBS surgery had such complications for your husband.  I pray that I will be as kind and dedicated of a caregiver as you are, if and when the time is needed. I've got to go back to work, it's been a really busy week, or I would comment more. Gotta run! More later!






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