Tuesday, March 07, 2017

Shake It Off

Hey!!  I'm actually back here in less than 2 months!!  Woo!  I'm on a roll now!  Actually, I told ya'll I would try to post again soon because I felt I would have an update in the next couple of weeks...and I do.  Back in late October I went back to my primary doctor for some new blood work and then in February went back once more after new symptoms and issues became very troublesome.  I will go ahead and tell you that I have been diagnosed with Parkinson's Disease.
Now, I am going to explain the issues here and this post may be long but I'm doing this for a specific reason.  1.  In case the information may help someone else and ...2. To clarify things for the few folks that read my blog and actually know me in real life.  I want it to be very clear that this is NOT something I just pulled out of my ass and one day decided, hey, I'm gonna have Parkinson's.  Trust me, I don't want this crap disease.  And yes, there is a real reason I'm making this clarification but that's all I'm gonna say about that.

Ya'll know for about 2 years I strongly felt that I just had arthritis of some sort. I had many symptoms that went along with that; pain, stiffness, etc.  Arthritis runs in my family.  A couple of the doctors I saw said, yes, it's possible.  The hitch was, though, that every time they did an X-ray etc. they would all say the same thing..."there is some small erosion/ degradation in your joints but it just doesn't seem like enough to validate the amount of pain you are describing".  I heard this several times.  Plus, my blood work just didn't back it up.  In fact, when I did go back in October my sed rates were perfectly normal and inflammation markers were as low as they measure.  I was like, wth?  Well, by February I was having all new issues.  I couldn't swallow food well.  I didn't necessarily get choked but the food just would not go down often times.  No matter how much liquid I tried to wash it down with and all that.  A few times it got kinda scary.  The pain and stiffness I've had in my hips/ rear end area started moving up into my right shoulder and arm and down into my feet.  Within 2 weeks my shoulder had become so stiff I had trouble getting my shirts on and off.  The tremor in my left hand also became much more noticeable at times and often moved down into my left foot if I got upset.  And I was getting upset a lot.  Sometimes about stuff that didn't really seem to warrant that kind of anger when I thought about it later.  I have no doubt that many of you all noticed that some of my posts over the last year or so often sounded angry or very frustrated.  There are a number of other issues; gastrointestinal, etc. that I just will leave at that....One reason I haven't posted much is because typing had become pretty difficult due to my hands jerking or just feeling like I couldn't control them.  I drop stuff constantly.  My handwriting also became smaller at times and would run down the page, no matter how much I tried to control it. Something just seemed very wrong.  I did look up some stuff and that's when I saw the connection between muscle stiffness/ pain and Parkinson's and the fact it most often presents it's self in your shoulders and moves across into the neck area, along with several other of the new issues I was experiencing (trouble swallowing etc.). Most people think of the tremor as being the main thing but it's not always.  This would really explain why no pain or arthritis meds ever helped me. 

There is no definitive blood or imaging test for Parkinson's, unfortunately.  Basically, if you have the symptoms and have exhausted all other possibilities, which I had, then they simply give you a dopamine agonist drug and if that helps, you have PD.  Most of these drugs are not used to treat much else, so it's pretty conclusive.  In reading I discovered that there is a natural dopamine supplement that you can get over the counter and one neurologist in a forum I was studying said a few of his patients used it with good results.  So.  I ordered some and started taking it.  Sure enough, within 7 or 8 days many of my issues had improved significantly.  With these results I emailed the neurologist on the forum, told him all this info and asked him..."Do you think that it is a reasonable thing to think this could be Parkinson's?" .  He said  'Yes, that if the L-dopa helped, then I "most likely had Parkinson's, unfortunately."  I took this info back to my primary doc and also noted to him that I had 2 uncles with Parkinson's (they were brothers) and that I had been a welder for 27 years.  He did a little exam and said a visit to a neurologist was warranted, with the strict orders I also tell the new doctor my family history and that I was a welder.  I then emailed the great doc I had gone to at UAB, explained to him my findings and that I was trying to get in to see a neurologist in the St. Vincent's system. (My insurance basically told me that they were one of the few systems I could go to.  They now considered UAB to be too expensive.)  Anyway.  This doc emailed me back and said he could agree with that diagnosis and offered to help me get in to see either of 2 colleagues that he really liked. I took him up on that offer and quickly got an appointment with the one closer to me.

March 2 I went to see this neurologist.  I liked him a lot.  He was very thorough, we talked for about an hour.  He did 2 physical exams and on some of the balance stuff I was all over the place and I have a bit of neuropathy in both feet. He actually called the doctor at UAB during my visit and consulted with him for a while, came back in and we talked some more with a few more exercises for me to do.  At approximately 10:00 a.m. on that Thursday morning he gave me an official diagnosis of Parkinson's and prescribed Mirapex for me.  This drug is only used to treat PD and restless leg syndrome and as you can see...the label clearly states what he prescribed it to me for.  He also told me to continue the L-dopa supplement if I wanted to, since it had helped and what I really liked....he greatly advocates exercise as an effective treatment and also suggested I consider boxing therapy!  Apparently they have had very good results with such and it sounds fun.  You don't actually box another person but simply use the hanging bag and it also includes jumping rope, running and lots of balance related boxing training.


So.  There you go.  It sucks.  I will admit I bawled my eyes out after talking to the first 2 doctors and ended up blubbering about not wanting to lose my mind.  Since PD is the drastic loss of dopamine to the brain there is a heavy mental aspect to it.  By the time I was actually diagnosed I had sort of calmed down and wasn't crying anymore.  One thing my new doctor tried to emphasis with me is that Parkinson's progresses very, very slowly for most people and it is not fatal within itself.  Both my uncles lived to be in their late 80s.

So.  Yes, I am very glad to finally have an answer despite the fact the answer sucks wind.  Yes, I am very glad it's not cancer and it's not going to kill me.  However, the idea of having a disease that is slowly destroying my brain and for which there is no cure (unlike some forms of cancer) is not the happiest thought and the ol' "well, at least it's not cancer" response is probably not the best thing to say to someone you know that has just been diagnosed with something like this.

I have noticed a bit of improvement in many of my symptoms already...eating is not so scary anymore I'll tell ya that!  Although I move more slowly and it takes me a while to do stuff, I have felt much more like doing things and have made some nice progress in the garden lately that I'll show ya'll later.  Just having some of the apathy and brain fog lifted is worth a LOT.  I still have a great deal of pain but am hopeful this will get better now.  I will try to post here more often now.  For one, I hope to be doing more to actually have something to post about.  Secondly, I have an easier time typing now....for the most part.  Some days I'm off a little and have more of an issue with the tremors but lots of days are better as far as that goes.  So, thanks for reading and I appreciate all your comments as usual.

16 comments:

Ed said...

As you know via FB, it runs in my family too. I'm just glad that you now have an answer. Maybe one day they will be able to find a cure or at least control the symptoms even better.

ErinFromIowa said...

*sigh of relief* You finally have a diagnosis. Man, it sure does make sense. *gentle virtual hug*

Vkl said...

I'm so sorry this has happened to you but like Erin said, it has to be a huge relief to get a definitive answer. I'm so glad the meds are working for you! Have you been beating the heck out of the punching bag? :)

Vonne

Hermit's Baby Sis said...

Praise God for an answer, at last. Maybe not the best you could have wished for, but sounds like at least some relief is on the way.
Looking forward now to more posts, and praying for you.

MamaHen said...

Hey Ed! Yes, I hate to hear your family also deals with it. I'm glad to have an answer too and I may look into participating in some of the medical trials. Apparently they have great difficulty getting people to participate. But that's the only way much progress is made towards a cure.

Hey Erin! thanks! yes, it actually makes quite a lot of sense once you know the details.

Hey Vonne! It is a HUGE relief, yes! We bought a bag and gloves yesterday and Jack is going to work on getting it hung up today! Should be fun!

Hey Sis! thank you. I appreciate any prayers! I'll tell you, I got down and prayed about 2 months ago and I said, God, just let me know what is wrong with me and I'll deal with it. About a week later my shoulder started seizing up and then everything started falling into place. I'm looking forward to some more relief, yes. I'm excited that maybe some of this pain will let up.

paullamb said...

What does your welding history have to do with the diagnosis?

MamaHen said...

Hey Paul! Welders have a significantly higher incidence of Parkinson's than the regular population (like double). Theoretically, it's due to the manganese in the flux coating on welding rods. I have been under the impression for years now, that after manganese was implicated in connection with PD that it was taken out in the early to mid 90s. This may not actually be true and I'm not sure where I read that now or what gave me that impression. When I first started welding, and for years after, my uncles had not been diagnosed with PD yet. Not sure if it would have deterred me anyway.

Molly said...

Hugs Annie, my prayers are with you.

HermitJim said...

I really don't know what to say. On the one hand, it's great to finally have an answer about some of the problems, and on the other hand it sucks at the same time! At least you are getting a little relief from the medication...that's a good thing!

My friend, you know that I wish you all the best. I'll keep you in my prayers and think only happy thoughts for you, OK?

JO said...

Well Annie, I'm glad you have some answers even though yes it sucks. And the meds are helping relieve some of the pain. Do you or they say this has been the problem you have been suffering from all these years? I wish you more freedom of pain and less of all the other symptoms. Beat the hell out of that bag. And you know I will be following along.

Jane in Maine said...

Wow.A good friend on the tiny island we live on off the coast of Maine (Cranberry Island) and his sister have it.Michael Westphal has been a true inspiration in his fight and fundraising efforts.I would love it if you and your readers could view his journey in a film called "Outrunning Parkinson's".Good luck Annie-stay strong, thinking of you.

MamaHen said...

Hey Molly! thank you! I appreciate any prayers.

Hey Jim! thank you very much for all the happy thoughts and prayers. I do appreciate that. Yeah, there's not a lot you can say....it sucks..BUT..the medicine is making me feel better and I am happy for that. I feel like doing things again and that is great.

MamaHen said...

Hey Jane!! didn't mean to skip you! thank you and I will certainly look this film up and watch it! thank you so much for giving me the info.

MamaHen said...

Hey Jo! I didn't mean to skip you either! I did not find your comment until just now. For some reason Blogger does not notify me of all comments (I don't understand why) and I had to go look in the "comments awaiting moderation". Anyway...Yes, apparently this is the reason for my health issues for the past few years. It all makes sense now really but it took the tremors getting worse and the trouble swallowing before it really came to light. The meds help with the pain at times but not always and I am trying to figure that one out. They have completely relieved the pain in my feet, which is great! just not everywhere else.

Anonymous said...

Annie, sorry to hear about this diagnosis but glad you have some answers. Parkinson's is one of those diseases that has a broad spectrum of symptoms and hard to pinpoint.
I have friends and clients that have Parkinson's and it seems to take a long time to get a correct diagnosis and some people that have that diagnosis, eventually get another or different dx.
I had a friend in SC that saw 4 neurologists and 2 years later finally got the the PD dx. It was in actuality Multiple Symptom Atrophy, which he actually diagnosed himself.
I know UAB has the Movement Center and I have clients that go there sometimes for definite dx. but stay under the care of their local doc. Some meds work better than others.
Take care and hope your new management plan and drugs get you on the right path.
Tammy in LA.

Tee Bee said...

I'm so sorry that you are having a hard time -- the Parkinson's -- and wanted to let you know of an interesting area of research regarding some diseases being responsive to intermittent fasting (fancy way to say "eat your meals within a restricted window of time each day" and a ketogenic diet. Please do some online research. Here's one statement I found, of many: "...there is evidence from uncontrolled clinical trials and studies in animal models that the ketogenic diet can provide symptomatic and disease-modifying activity in a broad range of neurodegenerative disorders including Alzheimer’s disease and Parkinson’s disease." And this: "Compared to ad libitum-fed controls, rats and mice maintained on an IF diet exhibit less neuronal dysfunction and degeneration, and fewer clinical symptoms in models of Alzheimer’s disease (AD), Parkinson’s disease (PD) and Huntington’s disease (HD)."