[richard]

I would love to hear some good jokes.    I’ve been kinda down on my parky lately.  ????

[richard]

Agree

[richard]

Hi Gary-

I split the tablet, take 1/2; then split the remaining half and take the quarter.  Works in a rough way.

Don’t know what DHVY is?

[richard]

In addition to the others mentioned, my eyes and nose weep in the evening and my toes curl under…

[richard]

Wow Ally, good topic!  Dealing with loss and acceptance are perhaps the hardest part of the disease for me.

PD stopped me from working at 60, while I planned to work until at least 70.  I fully expected to spend my retirement traveling with my wife, etc., just like the TV commercials.  So, the first loss was my lucrative career and active retirement plans, and with them, the loss of my identity.  That was a very difficult transition, but one that every new retiree may go through.  To cope and fill the void, I found new things I thought I might enjoy, looked over class catalogues, read books, and renewed my interests in old hobbies and things I had always loved.  I turned back to a group of friends for regular coffees, dinners, movies, etc.  So, the loss of my occupation and identity waned over time.

But, the much more extreme loss was the loss of my health, physical strength, and ability to walk.  (The loss of the ability to hike while sojourning with nature was particularly hard.). Such a quick and dramatic loss made me turn into my self.  I realized I was just one person of  the 7 billion on the earth.  I realized that every person who is born will also come to this end.  I realized that we are all dying, but with PD, we are dying in slow motion (literally and figuratively).  I read a lot about the process of dying and grieving.

The way I overcame this more significant blow was–acceptance.  I no longer pretend I am well for appearances. I fully accept I am damaged with significant limitations.  I focus on what I can do rather than what I can’t.  I tell people I have PD.   (Although it’s obvious,) I don’t hide it.  With acceptance came peace.  I am now happily crippled.  There are so, so many worse ways to go.  The acceptance has given me insight and empathy for the others who suffer.

Desiderata and The Prophet are my guideposts.

Kind regards, Richard

 

[richard]

Hi Jorge-
Just curious, how much sinemet do you take daily to feel well?
Thanks,
Richard

[richard]

Hi Alan-

Funny how it makes you feel better that someone understands what you are going through.  Anyway, I do have some thoughts on apathy:  First, make sure you are not depressed.  Early on, I read some accounts of depression with apathy as an additional symptom of depression.  I don’t believe I am depressed now because I am happy, etc.  But one thing about PD is your brain chemistry is all screwed up.  Shortly after my diagnosis of PD, I was clinically depressed with high anxiety.  I also had emotional outbursts which were not part of my past history.  So, I spent the summer with a neurologist trying different antidepressants until I found one that treated my depression symptoms with the least side effects.  Years later, I am still on the lowest dose of the antidepressant but feel good.

Once your free of depression, I think you can reduce apathy (but not eliminate it) with exercise–the higher the heart rate the better.  I too hate exercise with rubber bands and I cannot use the treadmill or even walk because my gait has grown so bad.  I’ve tried everything except boxing.  I used to lift weights but I don’t get the same “high” from strength exercises.  Swimming and riding a bicycle is good, but the best for me is aerobics class every day in the warm pool at the YMCA.  The combined effect of loosening and using all my body muscles makes me feel better than any other time of day.

Which brings me back to apathy:  Somehow the endorphins from exercise make me feel better, and when I feel better, I have more interest in the world around me.  So, Alan, that is my suggestion on apathy, and if it makes you feel any better, I’ve had two long naps today!

Kind regards, Richard

[richard]

I am 62 and seven years post diagnosis. Two years ago I was an avid cyclist. Now I have trouble walking.

Exercise is better than my medicines, but one size does not fit all. I’ve tried everything except boxing.

Presently I do pool aerobics for about 50 minutes six days a week in a heated pool at the YMCA with foam barbells. It gives me energy and makes me feel great!

[richard]

Hi Mary Beth-
I wish I had a daughter asking as many questions as you! I am 62 and seven years since diagnosis.

Anyway, fatigue is my worst symptom. Fatigue has many meanings. For me, I mean that I grow so tired I need to lay down for an hour or more, two or more times a day. It’s not constant, but varies from hour to hour. There is little warning, but I can usually feel it coming on. Things like driving, multi-tasking, focusing, physical exertion, excitement, etc. seem to bring it on quicker. Caffeine doesn’t help much and makes me anxious. Pool aerobics makes me feel better than any medicine, but nothing works as well as a nap. Thus, much planning is required for outings and travel because I need a comfortable, quiet place to lay down when it reveals itself.

Another problem is apathy. Even with naps, good sleep, exercise, good diet, and a handful of medications, I am hardly inspired to do anything. Most people don’t understand the great disabling nature of fatigue and apathy.

Somewhere I read (in many years of researching Parkinson’s) the theory that the greatly reduced numbers of neurons (say over 90%) in the basal ganglia region of the brain stem cause the rest of the brain to work much harder, resulting in fatigue, but who knows?

I’m sure you are a great help to your dad.
Richard

[richard]

early in my journey, i simply could not get comfortable in bed.  i bought a new tempurpedic bed and i felt stuck in it. after reading a post on how good they were for PWP, i bought a $10k sleep number mattress with bells and whistles.  soon, i came to hate it t0o (i call it the air burrito).

then, like goldilocks, i slept one night on an inexpensive mattress (that came from Ikea rolled up) in the spare room and love it!  i made the new bed even better by sleeping on satin sheets so i can slide around.  over the years in retrospect, i now realize the problem was not the beds, but muscle pain from stiffness and being stuck in one position all night.

on another note, i suffer from hip pain that keeps me awake at night.  multiple drs, physical therapy, xray, and mri did not help.  my own conclusion, when the meds are off my sciatic nerve is irritated by a stiff piriformis muscle (or vice versa).  when it hurts, i sleep on the other side with a pillow between my legs.  no cure, but it helps.

[richard]

sherman-

on rising from bed, i take levodopa as soon as i wake and take time to read the news; i sleep on satin to slide easily out of bed; once up, i drink strong coffee and move around every day in the heated pool at the Y.  this, together with an optimistic attitude helps me in the mornings.

mary beth-

naps and bed rest work best for me when symptoms flare up.  in the early  evening when my off period begins, i take low dose cbd/thc gummy bears for immobility, pain, and anxiety.  however, real care must be taken with thc because it can make you dizzy and expose you to a fall.  for this reason, i don’t recommend it to others.

 

[richard]

wow, that’s an incredible story and that guy is definitely not your friend!

i too can’t multitask or process as quick as i used to, and your story reminds me of a couple of my own.  first, it’s being reprimanded by my otherwise loving spouse who forgets at times why i brought home the wrong thing from the grocery, my inability to move in heat or cold, to understand a conversation in a crowded restaurant or my inability to act quickly in a complicated situation.  i deal with this by trying to explain it’s part of the disease process.

but recently a 30 year friend and neighbor (who always tries to be protective) texted that he wanted me to join him at a concert, to which i politely declined.  he texted back that he knows i could go if i wanted to, implying that i have control over my symptoms.  i wrote back that i declined not because i didn’t want to go, but because i would be stiff, in pain and uncomfortable in a concert venue at that hour.  he never treated me as stupid, but his concert invitation felt like it.

[richard]

I really dislike the label, “disabled.”  Let me explain:  Diagnosed at 55, I was forced to retire my law practice at 60 because of problems with walking, diskenesias, holding urine, fatigue, memory and concentration (among other things).  On advice, I applied for  SS disability and was promptly denied.  Frustrated, I appealed the decision.  When SS granted the appeal and disability, I cried because it had finally sunk into my mind that I was now an officially disabled person (if PWP were not enough!).

I am now 62 and my greatest joy is daily aerobics in the YMCA pool.  Despite the fact that my symptoms are now worse, the greatest Parkinson’s challenge is in my mind.  I don’t think of being disabled or identify as disabled.  Rather, I am a PWP who has physical limitations.  The tough part is fighting my mind to be happy and optimistic with what I’ve got left, as compared to what I lost.

So, I am only disabled in the legal sense.  And there is one other good thing, I can use my handicap placard to park when the lot is full!

 

[richard]

Thank you Sherman, I forgot about DBS.