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RIspouse

We may be facing PD

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Good Morning,

I am new to this forum as well as being new to possibility of my husband being diagnosed with PD.  It's been a rough few weeks since our primary care appointment when I had to demand that my husband go in to be seen.  Since Xmas break, he has not been his usual self.  

Leading up to then my husband was diagnosed with type 2 diabetes and was given metformin, which bothered his stomach, then given januvia which we thought zapped all his energy, and was causing depression.  He's now on a new type 2 diabetes, however, since the end of Dec things just didn't seam right.  

He was showing no interest in the things he loved doing and was sleeping constantly.  All signs of depression, however, I began noticing other issues, like slow moving, shuffling of his feet, and lack of strength for simple tasks.  My biggest concern was when he started to show signs of forgetfulness.  That's when we visited the dr two weeks ago, who wouldn't say much, except refer him to a neurologist and asked us if PD ran in the family.  As far as we all know, it doesn't.  Depression does, and we was prescribed a low dose of an anit-depresent to see if he could be 'kick started'.  So far, I don't see a change.  

All day he sits in front of the tv, making no conversation, and has an awful expressionless look on his face.  At the doctors office he could not quickly answer simple questions and most recently has forgotten his passwords.  

I fear for what lies ahead for us, me, and our 11 yr old.  My husband is 52 and has been our rock, but I fear he's slowly crumbling.

Although we haven't been given the diagnosis, and as I grasp onto hopefully other explainations, I've been reading, googling, and researching what I can.  That is what brought me here, and I have read many stories, many sounding quite positive.  

I guess I'm just looking to voice my thoughts and feelings and looking for any advice, comments, suggestions, or 'whatever'.

Thanks

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Sounds like you have an awful lot going on . . . the fact he has new diagnosis and medicines along with the changes happening so quickly . . . makes it hard to know what to do. From where I sit, the most important thing is to have good doctors that you really trust and let them figure it out. Your main job is to describe to them what you see and know. 

 

We learned the hard way not to try to be the doctors. We chalked some very serious symptoms my husband was having to PD, turned out it was a thyroid problem. We made the same mistake a second time when we made adjustments in the thyroid medicine and made him worse again! We work at learning a lot and being proactive but leave the diagnosis to doctors that we trust. In the middle of the time my husband was going through the decisions about going on disability, I was diagnosed with breast cancer. The best advice that I received was to "stay away from Dr. Google" until I had a diagnosis and was ready to make treatment decisions. The best advice that I have to offer is "remember to breathe". What you are going through is hard and until you have a solid diagnosis, it is hard to figure out next steps. 

 

Sending good wishes and support your way. One more thing, my husband's MDS reminds us that generally with PD nothing happens fast (the thyroid problems came on fast) so there may be other reasons for the changes your husband is experiencing. 

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Thank you Golden01 for your reply.  The speed at which these symptoms came on is mind boggling, yet the primary dr didn't want to even talk about the changes in diabetes meds and how this all happened around the same time.  Here's to hoping his neurologist has different insight.  

I'm trying to take it one day at a time, unfortunately, like my mom, I am a worrier and I see the worst in everything.  Its going to take a long time to get to tomorrow.

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Tomorrow will come, soon enough.  It may have answers or just more questions.  All you can do is try to get through today, breathe, remember no matter what you are still you today, and you will be there tomorrow and the day after.  The same goes for your husband and your family.  So take the day to breathe deeply, and marshall your resources as answers or questions will come as they will, not as we want them.

 

Good luck, and also remember that you've got your husband on the right path, to a doctor who can seriously assess what is going on and help.  That's all you can do at this point, and you've accomplished that.  Now the hard part of waiting for the next few days starts...  Be strong, and know people here will listen.

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Hi Rispouse and welcome

 

 

Try and relax while the doctors do their job, you will have your answers soon enough and then you can go forward whatever the outcome.  For sure expressing your worry, your fears is a good thing, as it does let you know you have some support here, we do hear you.  So now you get to practice patience regardless if you want to, so do the best you can until you have the answers. 

 

Good luck to you,  come as often as you need or want, waiting is the hardest part.

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Thank you for all of your supportive words.  We saw the neurologist yesterday, and I was very pleased with this doctor.  He really took the time to listen to all of our(my) concerns, and never once made us feel rushed.  He has seen my husband in the past(about 3 years ago) for a condition called papilledema.  He hasn't ruled anything out and will be looking into several tests ordered.  He had blood work done yesterday, looking into lyme disease, thyroid, and B12 deficiency.  He has ordered an EEG and an MRI.  Tomorrow we go for a neuro psych eval.  He pointed out the symptoms of pd, however, the rate at which it came on has him puzzled.  The dementia signs are also quite concerning and he mentioned Lewy Body Disease(which from my basic understanding, doesn't sound good) as well as other types of dementia.  He was also concerned with a very slight drooping on the left side of his smile and his shuffling feet.  Luckily he knows my husband and the type of man he was a few years ago and can see these troubling differences.  

 

Here's to tomorrows 3 hour evaluation!

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Rispouse,

 

Wow.  Okay, now you know that something is wrong, but you already knew that.  I know I was actually almost relieved as I thought I was going crazy for a long time, insisting that something was wrong/off, but not being able to put my finger on it.  So time to keep moving forward as gracefully as you can.  Look for information from good sites only: the National Parkinson Foundation is good, but if you want more info that you can trust, check out both the Parkinson's Disease Foundation educational material (pdf.org)  They also, like the NPF have a hotline you can call with questions. 

 

Is the Neurologist a Movement Disorder Specialist?  If not, you need to see one.  Call either organization to find the name of a MDS near you.  MDS' specialize in parkinsonism (the term before they decide what flavor of PD is coming out of the box).  Keep us posted, ask any question, try to keep breathing, reach out with a pm, do everything and anything to keep yourself going during this very harried time.  Oh, by the way, very nice white-knuckled response.  That's called grace under pressure, and you can do this.  There are a lot of people here who understand, and will always listen, and answer whatever questions they can.

 

Take care of yourself, and keep strong.  And yes, neuro-psych tests are scary, try not to worry about that report, until it comes back.

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