Another Good Visit with the Parkinson's Doctor

Yesterday was Charlie's second visit with Dr. Slevin, his Neurologist/Parkinson's doctor at Lexington Clinic.  Dr. Slevin is a guru in Parkinson's research at the University of Kentucky.  We heard him speak several years ago and were very impressed with his knowledge of the disease and medications.  He has a good "bed-side manner".

I was really dreading this appointment because I have witnessed very subtle, but very real instances that Parkinson's has taken a greater hold on Charles.  I am so glad I went with him because the two doctors that we talked to alleviated a lot of my fears.  One fear is that Parkinson's could be the cause of his knee issues.  Not so!  There is no pain related to Parkinson's.  Stiffness related to Parkinson's can be offset with exercise.  (I knew that!)  So, he has an appointment with Dr. Chatta this month and I am going with him to see what our options are.  If he suggests knee replacement, I think Charles should do it.  We shall see.  But at the very least, I am going to encourage him to go to the gym daily.  Why not, since Silver Sneakers covers the cost?  I know daily visits to the gym made me feel better. (He just left for the gym.  Yes, I need to go with him, but not this time!) 

Another fear is the instances of confusion I have witnessed with being slow of thought, time, money, etc.  Turns out this is a side effect of the medication he is taking for tremors (shaking).  He has had a lot of problems with this medication too with dry mouth.  But, it is a "super-drug" for tremors.  Dr. Slevin told him to self-adjust the medicine to get to a balance he can tolerate with tremors/side effects.  So, I am hopeful that he can cut this medicine in half.  I need to remember Matthew 6:25 and let God take care of tomorrow and not worry about dementia.  I could easily get dementia before he does.

Charles has been doing so much better recently with getting involved with conversations of others, laughing more and being involved with life.  I know that winter is worse for him and fear that this will be a bad winter.  He can't get out into the sunshine much because the cold weather causes his hand to hurt.  We talked to a beautiful lady that works with Dr. Slevin who was diagnosed with Parkinson's about the same time Charles was (I kid you not -- she was wearing at least 4'" heels).  She said the best advice that she can give is "Live life and stay active!"  So, I realize I have to work harder to keep him busy (if we can fit it into our already busy life).  And, I have to work harder at keeping a positive outlook so that he will.

They are still encouraging us to start a support group in Mt. Sterling.  I really don't want to because I think it would be hard for me to come up with "meeting material" since I don't have Parkinson's.  And I know this would totally fall on me.  It would be a worthy thing to do and I know Charles would benefit -- I just don't think I am ready -- maybe someday when I retire.  Onward, upward!  

New doctor! New hope!

New doctor!  New hope!  The neurologist in Georgetown that Charles was going to has moved to Prestonsburg so we were forced to get a new doctor.  Even though we never had problems, I always had concerns because he was "green" -- fresh out of school.  I was never confident that Charlie was on the right medications/dosages.

We were very fortunate that Dr. Owens set Charlie up with an appointment with Dr. Slevin today.  Dr. Slevin has been a leader in Parkinson's research at UK for many years.  He is a guru in his knowledge of Parkinson medications.  And the good news is that Dr. Slevin did not change anything; no medication adjustment is needed.  He did tell us that he thinks Charlie is four years into the disease, not two.  And I agree.

Several months back based on the success that a childhood friend had with Brain Stimulation surgery, Charlie set up an appointment with Dr. Van Horn for testing.  But, he has since cancelled his appointment and decided not to proceed with testing.  After researching side effects, he decided to instead focus on treatment for his knee.  Both Doctor Owens and Dr. Slevin think that was the right decision.

With all that being said -- from where I sit, I feel that Parkinson's took a little bit bigger hold on Charlie in 2013.  It seems to me that his muscles have gotten weaker - that his grip is lighter.  It is hard to attribute a symptom to Parkinson's fully because he has other health issues, with one usable hand and an arthritic knee.   But, I have watched him get slower this year.  The fork goes slower from the plate to the mouth.  He fumbles with things like keys -- it just takes longer to do things.  He fumbles with his phone, rarely getting it before the caller has hung up.  He has a hard time putting his jacket on.  He stays in bed much longer in the mornings.  Many days, he isn't out of bed when I leave for work.  He is walking on a cane most of the time, which is arthritis.  But, it is hard not to wonder how much of the knee problem is arthritis and how much is Parkinson's.  Another thing that changed in 2013 was his driving skills.  I began noticing that we were taking very wide left turns.  He admitted to me that driving is no longer automatic for him.  He has to make a conscious effort to drive -- he has to mentally tell his hand what to do.  But, he is still driving.

Mentally, he seems to be doing much better.  He is talking and laughing much more.  He seemed very upbeat after his appointment today.  Hopefully, warm weather will come soon and he can get out and get some sunshine.

For me personally, I am not handling the Parkinson's as well as I thought I would.  The patience that I had with my children doesn't come as easy as it used to.  It is hard to separate the habits that "always" annoyed me from the habits that he now has no control over.  An example is, when he is looking for something in a drawer or cabinet -- he won't look past what he first sees.  He comes to me to find it for him.  It is hard not to say, "Your mother doesn't live here."  I am finding that I have to work much harder on ME.  So that is my goal for 2014 -- be a better caregiver.  We are very blessed and need to count our blessings every day!

The Road Back to Normal...

First of all, I don't know that Charlie's life will ever be normal -- and what is "normal" anyway?  One of my biggest fears with Parkinson's was that he was tuning out of life.  For a few months, he was content to sit on the couch and sleep.  So the road back to normal for me is his "participation" in life.

In August, we had the opportunity to attend the Polishing the Pulpit Conference in Sevierville TN.  He knew I wanted to go but I insisted that it be HIS decision.  To my total surprise, he agreed!  I kept waiting for him to tell me he had changed his mind -- he never did.  The trip was wonderful; the cabin and the scenery were breathtaking... but I kept waiting for a complaint about something (which is my clue).  But he never complained.  In fact, he never missed a session -- he was there early morning to late at night.  And the opportunity to spend time with his Christian brothers in such a setting was priceless in my book.  He has never told me he enjoyed the trip; however, all his comments were positive -- even talking of renting a cabin for all of our family sometime.

We "hit the road running" when we got back.  He has not missed an opportunity to go to a gospel meeting or church event -- we have been so busy since August.  He never complains of being tired.   He continues to go to the gym -- and even goes alone.  He enjoys babysitting Dana Kate and always looks forward to Tuesdays.

Another big step for him was filling in as preacher for Danny one Sunday.  This took a lot of courage because his voice quality is so uncertain.  I think I was more nervous than he.  He really cares about the flock at Rolling Hills and keeps an active interest in everything.

I have come to realize he has traveled a long way on the road back to normal since last October.  In fact, he has agreed to go to a Kenny Rogers Christmas concert with me in December -- I am going to consider it a "date" since we have been married 40 years this year!  Normal for us is NOT going to a concert -- so I am hoping this will help us establish a new normal!  I am so thankful to God that he is again a "participant" in life.

Parkinson's Support Group - My Thoughts

Something I never thought Charlie would do is join a support group of any kind.  Not only did we join, he is interested in hosting the meetings in Mt. Sterling.  The organizational meeting we went to at Morehead was wonderful -- the Parkinson's guru from UK spoke (Dr. Slevin).  He gave us lots of information about medicines and research.  They served a wonderful banquet-style meal and we were glad that we went.

Thursday was the first official meeting of the Morehead group and it was BORING!  The lady in charge did not have much information and it was a two-hour meeting.  It was suggested that we break into groups of caregivers and patients in the future.  I really would like to talk to the other caregivers to see if they share my frustrations and fears.  One is a pediatrician and I would really like to get to know her.

Charlie is definitely the most mobile of the Parkinson's patients who attend the meetings.  But I fear that he will eventually get depressed because it's kinda like looking into the future.  Many of them are on walkers.

I have to admit, I am not adjusting to the Parkinson's as well as I thought.  I fear that Charlie will agree to start a group in Mt. Sterling and I will have to do the work.  He thinks he would, but I know him too well -- he would depend on me.  I don't have time and I am not mentally prepared to do that.  I think it would be a chore that I would dread every month; but how can I not support him if he wants to do it?  My personality is to do over-kill on everything and I just don't think I could come up with a good meeting every month.

I don't like to share distasteful jokes and such but a definite "Parkinson's funny" was told at the meeting.  One of the gentlemen went into a men's restroom to use the urinal.  He was standing beside a man in scrubs who appeared to be a doctor.  Because of cold hands, he said he has a habit of putting his shirt over his hand to keep it warm -- which is what he did while using the urinal.  Add the hand tremor to that...well you can guess the rest -- the guy called him a pervert and rushed out of the restroom.


On a positive note this week -- Charlie had a great doctor visit Monday.  Doc told him he is doing great and gave him the okay to cut back on one of his medicines.  He will go back in 6 months.  As we were walking out, he declared that he is going to take his medicine and forget about Parkinson's.  That is what I have been wanting to hear.  I just want him to get back into normal living and make the best of each day.

Last Night's Funny...

One of my fond memories of childhood is playing cowboys & Indians with all of the neighborhood crew.  Well, last night brought back memories.  One of the symptoms of Parkinson's is active dreams.  I was awakened last night by the sound of an Indian war whoop -- Charlie was dreaming he was playing cowboys & Indians.  Of course, I punched him to wake him up.  Gotta find humor in the disease.  I laughed.

Parkinson's -- the History...

This is a repeat of a post that I published in 2012 -- 5 years ago.  I am estimating that Charles has had active Parkinson's for 8 years or so.  I have people ask me from time to time about Parkinson's symptoms thinking that their family member might have it.  Charles is doing fairly well although he is on medicine for dementia.  We don't get much input from the Neurologist or his PA.  Their answer is usually "no change"; they update his prescriptions, take our money and send us on our way.  But I know he has changed.  We have reached a crossroad in our lives as we begin to close down our farming business and sell our farm.  But we are blessed in so many ways.

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6/4/2012 - Parkinson's -- the History

I’m not sure I could have done anything to have found Charles’ diagnosis of Parkinson’s earlier – doctors have told us we found it in the early stages but below are some of the things I could have noticed up to two years prior.  According to UK research, it doesn’t appear that Parkinson’s is hereditary – instead it is linked to environmental factors – but anyway – this documentation is for my children and others who are interested, just in case.  Thankfully, Parkinson’s does not seem to have affected him mentally.

#1 – Muscle stiffness.  At the time of my retirement in 2008, Charlie and I were very active hill-walkers and had lost quite a bit of weight.  He was a very fast walker and I had to take lots of quick baby-steps to keep up.  Then, we both became couch potatoes when Dana Kate was born in 2009 and we became the babysitters.  In the summer of 2009, we went to the park to pick up where we had left off the summer before and it was very noticeable that he could not keep up with my pace.  We both thought it was knee problems, back problems or the fact that we were now couch potatoes.  The thing I should have picked up on is the way he held his body – very stiff in his walk and did not swing his arms normally -- definitely a symptom of Parkinson’s.

#2 – Swallowing.  Somewhere in that same time period, he began having swallowing problems.  He would choke on certain foods and complain that he didn’t have enough moisture in his mouth.  Beef was particularly bad and he was careful to have water close by and many times had to run to the trash can when eating – the food just wouldn’t go down.  He went to the family doctor and to the allergist seeking answers.  Neither picked up on the Parkinson’s.  The allergist told him he didn’t have allergies; however, he prescribed Nasonex and Allegra, allergy medications and of course, neither helped.  The allergist recently told me that people normally have this symptom at the worsened stage of Parkinson’s – not the beginning.

#3 – Active Dreams.  He also began having very active dreams around that time and had never been a sleep-talker in the past.  His talking and yelling got pretty bad and I started sleeping in the girl’s room so I could get some sleep.  I attributed this to cop shows he liked to watch or situations he had to deal with from time to time as an elder.  Yes, I have heard him preach in his sleep.  Active dreams are a symptom of Parkinson’s.

#4 – Voice volume.  The most disturbing symptom for me was that he began to lose the volume of his voice.  This was affecting his ability to talk publicly and teach at church.  I understood that he might not be loud enough but I could not understand why it would strain his voice.  He would attempt to do announcements at church and not only could I not hear him but I started noticing a slur in his voice where his words were running together.  I thought he was just a lazy talker.  A couple of instances occurred at church where his voice would hurt when he came home.   At one event, it broke my heart when some ladies were yelling to him to speak up and like a whipped-puppy, he simply said, “I can’t” and quit talking.  My heart broke for him but I still did not suspect Parkinson’s.  I did have a concern about throat cancer.  

#5 – Tremors.  I did not notice the shaking until a few months before the actual diagnosis was made in 2011.  About the same time, he started complaining that he had to tell his right hand to do things – such as holding the steering wheel while driving. 

#6 – Drooling.  I would have never dreamed that drooling on the pillowcase at night was a Parkinson’s symptom.  I have been told that this normally occurs late in the disease.  However, in this early time frame, I could not keep the pillowcases clean.  I know it was Parkinson’s because it stopped when he began the medication.

#7 – Handwriting.  Again, this didn’t jump out at me because he has never had good handwriting.  But the thing I should have picked up on is that he sometimes could not read his own handwriting.   The first word of a sentence he writes is normal and the size dwindles to the last word being tiny and unreadable.

#8 – Dandruff.  I didn’t realize this was a symptom until I read the list below.  I thought it was because he didn’t rinse his hair well.  And it's not actually dandruff, more like pocket fuzz.

#9 – Fatigue.  During this time frame, he also became more noticeably messy.  He has always been messy – leaving his trash when he worked on a project.  It suddenly seemed that he was always leaving every counter, dresser, sink a mess.  An article that I read explained that fatigue causes them not to follow through.  They start something, tire easily, and leave their disorder behind.

Symptoms of Parkinson's Disease from WebMD

• Muscle rigidity
• Tremor
• Bradykinesia (mask-like appearance)
• Inability to swing arms while walking
• Loss of balance
• Forward or backward lean that can cause falls
• Stooped posture (when the head is bowed and the shoulders are slumped)
• Head shaking
• Voice and speech changes (voice will become softer with poor enunciation)
• Loss of motor skills
• Memory problems
• Changes in handwriting (smaller writing)
• Constipation
• Depression
• Feelings of fear and anxiety
• Confusion
• Dementia
• Fatigue
• Drooling
• Skin problems, such as dandruff
• Difficulty swallowing and chewing
• Sleep disturbances
• Urinary problems
• Sexual dysfunction

Follow-up Neurologist Visit

Charles was very nervous heading out to his appointment today.  I think he must fear "bad news".  Doc said that his walking is much better and he is not going to change anything but wants to give the medicine time to work -- he goes back in January.

Doc did say that he thinks he is depressed -- no appetite, not sleeping well, sitting around a lot and just tuning out.  Dr. Besson put him on an anti-depressant for his anxiety and Dr. Owens said it could take several weeks for the medicine to work.  This has been an awful month for him and I am so ready for him to snap out of it.  I did see an improvement in his spirit after we got home.  I want the old Charlie back -- the laughing, telling jokes, cutting-up Charlie.  I think he fears having to sell the farm (which I would love) or keeping the farm and not being able to take care of it.  I feel so sorry for him and I am not going to let him set at home alone all winter.  Winter depresses me!

I was hoping he would look at the MRI -- he didn't -- said he would look at it and call.