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.

First do no Harm...

My poor husband has had a terrible month of anxiety relating to his Parkinson's Disease. 

Charles' first doctor visit was to the family doctor, Dr. Alvarado.  Doc just gave him a diagnosis that he thought it was PD and wrote the referral to the neurologist.  No advice, no recommendation of therapy -- just collected his money.  We went to the neurologist, who sent him for an MRI and blood work, and he received a prescription.

His anxiety was so bad a few days later that I took him back to Dr. Alvarado's office and he saw the NP.  She gave him a nerve pill but no recommendations otherwise -- no appointment to come back.

We received advice from several that he should get a second opinion.  Made good sense to me.  So we went to Dr. Besson, a man whom a lot of friends trust and recommend, for a second opinion.  He gave us lots of advice and wrote a prescription for physical and speech therapy.  He followed through and requested records from Dr. Alvarado's office to make sure all the proper blood work had been done.  One more B12 blood test to go -- Charles heads back to Dr. Alvarado's office.  He sits there for a couple of hours and finally goes to the window to find out what the problem is.  Long story short, after a month of anxiety (which is in his medical record there) they tell him he is no longer a patient.  I would never guess that a doctor would react in such a way to a second opinion.  So much for helping a man who is down....

Never thought I would be a blogger...

I never thought I would be a blogger because I have nothing to say, nothing that would interest anyone.  Until now!  My life has been turned upside down with Charles' diagnosis of Parkinson's Disease.  This blog is for my children -- to document the daily issues so they will have a family history should this disease ever rear it's head again.

As of now, I know nothing.  Let the reading begin!  My dear friend (and holistic expert), Debbie Frederick gave me some information that she found.  I can't wait until I have time to absorb all the information.

Charles has a second opinion appointment today with Dr. Besson.  I feel good about it because I know we can trust Dr. Besson to find the best care.  I feel bad about it because I have a fear of the unknown. 

So thankful that I can depend on God....so many people have told me they are praying.

Because He lives, I can face tomorrow.
Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives. 
-- Bill Gaither