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