Sherman Paskett
Forum Replies Created
-
So true, Robert. I was going to do so much when I retired, but the body heard I was retiring and has taken charge, so noe we go to doctors.
-
Around here, October through March are the good months. Little or no rain and moderate temperatures make these months the months to do stuff. My fall activities include woodworking, home remodeling, and seeing family.
-
@Troy, or is it Bruce Lee? My neuro told me that only about 25% of his patients respond to melatonin. I had used it for a while years ago for sleeping problems and thought it was ineffective then, but RBD motivated me to dig for more info. The bottle dose is typically 3mg, but I read on a reputable site I could take as much as 12mg, so I started with 10mg. Later the neuro told me I could increase it to 15mg, which is my current dose.
In my dreams I have been a basketball player (wife’s pillow was the ball), dragon slayer, attacked by giant scorpions and an amorphous blob, and fought off bad guys countless times (wife is usually the bad guy). I never used to dream, or at least never remembered them. RBD has made bed time much more interesting. I cannot have a lamp on the nightstand nor a cane near the bed and recently relocated my pocket knives. Anything that could become a weapon needs to be far away at night.
Just one caution if you should go for a sleep study: Think very carefully how you answer questions dealing with kicking or punching in bed. In some states therapists are required by law to report it as “domestic violence” even if you are unaware and unable to control your actions.
-
#Daniel: I spent 4 weeks in physical therapy to get a knot in my left shoulder to release. Yep, there is a lot of strangeness with PD and so much we don’t understand — and many of the doctors don’t, either. All the more reason we should be armed with knowledge about the disease we carry before we let a doctor who is less than an expert on the topic do anything to our bodies.
@Douglas: If spinal surgery is one of those things that can advance the disease we should be informed before the surgery, not find out after. I really find it hard to believe that tremor would cause a spinal fusion to fail. For one thing, who is experiencing spinal tremor? Anyone out there? My tremor is in my foot, other people have it in their hands. How many people have core tremor?
-
How do I feel about birthdays? It’s simple: when I stop having birthdays, I’m dead, so I prefer to have a few more. How many? Maybe ten; not many more than that.
As for celebrating, it’s a non-event except for having the kids and g-kids over and eating too much Texas sheet cake (almost the food of the gods, is Texas sheet cake). Now, that is a celebration. No presents. I’ve got enough Home Depot gift cards to last several lifetimes.
I think conception day is more interesting than a birthday. Born in September? Your parents were huddled up in the dead of winter trying to keep warm. No wonder September is a popular month. What else are they going to do in January to keep warm? I was conceived in the springtime — maybe in a field of clover — probably explains my allergies, but I was definitely not the product of two people trying to stay warm.
(Sorry, I just couldn’t resist. I think September is … an okay month to be born … not as good as January, but okay.)
-
@Douglas, I am sorry you are going through this. One thing I have done for the past 3+ years is keep a record of symptoms I experience throughout the day. Every 15 minutes I am awake I make an entry in a spreadsheet for the intensity and type of symptom I feel, the dosage I receive, and food intake. I also track sleep quality. These records are very useful when it comes time to ask the neuro for a med adjustment. Before I started keeping these records it was hit or miss as to whether I would get the meds I needed or allowed to take them when needed.d
When I pinched that nerve between L3 and L4 I wanted to die, but I didn’t die and my PD symptoms die not change for the week before I went into surgery.
Then, at 11AM, Sunday 10/4/21, as soon as I came out from under the anesthesia I had tremor at a higher intensity than I had felt before, and from that time forward the PD symptoms have gotten worse at more than double the rate prior to surgery.
I am just starting my second medication adjustment this year. The first was from 6.5 C/L 25/100 per day to 9.5 per day. Today’s change takes it up from 9.5 to 11.5 per day. I have no clue when they decide to quit upping the meds and put me in for DBS, but I feel ready for it now.I am grateful I had the surgeon I did. He does the DBS implants at Barrows and happened to be in the hospital when I was there. He did not do a good job explaining the impact of spinal surgery on PD patients; all he told me was that PD and spinal surgery don’t mix, but that at least was a warning. I have gotten ueed to neuros being vague because often they simply cannot give a straight up answer to the questions I would like to have answered. They stay clear of answering any question that starts with when or how long: When will I die? How long until I cannot care for myself? When will I have to quit driving? … It sucks that we have to live with such uncertainty.
-
RBD, hands down, no doubt. Just last night I was enjoying an RBD dream. I was walking along the railroad tracks with a friend, dragging my coat behind me. It caught on something and I was pulling at it, trying to get it loose as the train was coming. I tugged and tugged at it, until my wife said, “Sherman, are you awake?” I was sitting up in bed, tugging at the covers. Suddenly I was awake. I sighed and answered, “Yes,” laid back down and went to sleep.
Since starting melatonin a couple years ago the dreams have become less frequent and less violent, but they still happen once in a while, but it is still weird to wake up and find myself acting out a dream. My wife tells me I vocalize a lot, am usually angry and swearing. I rarely swear when awake, so that behavior is out of character.
-
Yes, I need to learn about this disease because I have to live with it. I need to develop coping strategies for each new nuance I encounter. Part of that effort is to learn how others cope.
As others have said, I have no hope for a cure, I do not even want a cure at this point. I have to preserve what I have left and cope with the loss.
But as for research, there is a dearth of relevant, understandable material for the long-termer. There is plenty of high level info for the newly diagnosed. There is some good info for caregivers but I see little that deals with what the one they care for is experiencing while the caregiver tries to cope with their own personal loss.
For the Parky with 10 to 20 years under his or her belt, though, I find nothing.
-
Yikes! Jeff, that sounds terrible. My surgery was on L3-L4 with a laminectomy and partial discectomy. The doctor would not put in any metal to stabilize the area, saying that metal is bad for people with PD. But without the metal to stabilize the joint it feels weak and I live in fear of pinching that nerve again.
Did a neurosurgion or an orthopedic surgeon do your operation?
-
RBD (REM sleep behavior disorder) is the pits. When I grabbed my bedside lamp to beat off a monster I had to do something, so I started taking 10mg of melatonin and that controls the RBD quite well. It’s not perfect, but I am enjoying 90% RBD-free nights and no more violenct.
Getting up multiple times a night to pee was another problem. I chart my daily symptoms, so I always have a pretty good idea when the meds are off. I found that 6 hours after my last C/L for the day I would get up to pee, then every half to one hour after that. C/L is not supposed to work that way, but thanks to my charts my neuro added a dose of C/L right before bed. Now I generally get 6 hours of uninterrupted sleep every night. A nap in the afternoon makes up the deficit.
My message is that if you struggle with a symptom, the traditional fix may not be right for you.
-
Similar to @Richard Cooling, I have lower back pain, but not until I get up out of bed. In bed I am perfectly comfortable lying on my back or either side, but when the bladder says it’s time to get up, I have about 3 minutes to get out of bed and shuffle to the bathroom, about a 50 foot walk. But, wait, the meds are off, everything works slowly and nothing is coordinated. I struggle to a sitting position and the back seizes up. Everything in the L3-L4 region tenses up and pain shoots from 0 to 7 in an instant. But at least I am sitting; that’s halfway to standing, I tell myself. Then I sit there, mentally rehearsing how to stand. I have to use my arms a lot because the legs are not fully engaged and I move like a snail. Left arm on the bed, right arm on the nightstand, Ii push up and hope the legs engage and do their job. It takes about 3 tries, then I am off to the races to the toilet, about 100 Parky shuffles (smaller than baby steps) and I reach it in the nick of time. I used to sit and pee, now I stand because I am not sure I can get myself up again, in spite of having grab bars.
On the way back to bed the muscles are starting to unclench. If it is near 6AM I take my pills, either way I shuffle a few more minutes to work out more of the spasms in my back. Then, if the sun is up, so am I, otherwise I try to get another hour or two of sleep.
When I get up for the day I put on the TENS device for half an hour and wait for the last of the muscles to finally relax. I have a little back pain the rest of the day, but it is down at the 1 or 2 level unless I really aggravate it. Once the carbidopa/levodopa kicks in there are no more spasms and just a little background pain.
-
@Mary Beth Skylis; gads yes, none of us have to dig very deep to come up with our own horror stories about insensitive people. A month ago I felt verbally attacked at church by a friend who asked my why we are still wearing those stupid masks. I know the guy well enough to know if I didn’t break away fast it would become a scene. We were in the chapel and my meds were off at the time (not a time to engage in a debate) so I calmly said, “Well, I guess we’re just stupid,” as I tried to break away. He grabbed my arm and started going on about how COVID is caused by rebreathing our exhaust that gets trapped in the mask. I said, as calmly as I could, “Stop it,” as he blathered on. By the time I got out the third “Stop it,” I was shouting and then managed to break free from his grip.
Later he apologized. I was not very gracious about accepting it. I would like to have a calm discussion with him, but I do not think it is possible, not in the current climate. Maybe after the election.
Now, I have learned that any serious illness causes my PD to worsen measurably and my wife has her own chronic illness. We cannot afford to be sick — we are each other’s caregivers and we have not been sick with any transmissible illness since we started masking — but everyone I know has had COVID at least once and some as many as three times. Who is being stupid??
-
Wow, @John Citron, I am so sorry. I have never had anyone react to me in that way. Friends can come and go, but family you are stuck with. They need some empathy training, if that is even possible. If you can find a way to sit them down see if you can get them to watch this Youtube: https://youtu.be/N3zSSV11bLA.
If you are at all like me, you have worked hard all your life. You are not comfortable sitting around doing nothing. Your family has seen that side of you, the hard working can-do and will-do anything person who now struggles to get out of bed. What are they thinking? Has he become lazy? On the outside you look the same, but on the inside it’s hard to do anything, just putting one foot in front of the other when the meds are off is a severe mental effort.They don’t see what is going on inside to make that foot move an inch when the meds are off.
The only other idea is to check with your neurologist to see if there is a support group in your area or a counselor who can help you bring your family into your new reality. Take care and I wish yo the best with the family. PD is tough and should not be made tougher by uncaring people.
-
My wife and I started journaling the day we married 44 years ago. Now, 13 years into PD, keeping a handwritten journal is close to impossible, but I can still type even when the meds are off (albeit slowly). On January 1, 2023 I will start typing my journal and have already begun the very long project of transcribing the 44 years worth of hendwritten entries. It is beyond fun to be able to look back at the past — it is sometimes a lifesaver. A handwritten journal in a bound volume is admissible in court, while the same on a computer disk would not be.But still, it can be very interesting to look back 5, 10, 20 years to see what we were up to and how we ended up where we are.
My other project is a life history, which would be impossible without the written record of the past. Will anyone ever read it? Probably not, but I am doing this for myself, anyway. If someone does read it, then even better.
-
I’ve been on it for 11+ years. Dyskenisia showed up about 3 years ago. Last year we started trading off time against time with dyskenisia. By that I mean my dose is titrated so that I spend about as much time in tremor as I do in dyskinesia, currently about 3 hours a day for each. Dyskinesia is easier for me to tolerate than tremor, but both can bring an end to anything I try to do until the meds either wear off a bit or kick in.
My first med was Mirapex — that junk turned my world upside down. It nearly got me fired. I couldn’t sleep at night, I couldn’t stay awake at work. After a year of that I went to C/L and would do the same again.
Response to these meds varies. The doc had me try a couple other meds that were ineffective, but they might do wonders for other people. You never know. If you are worried about dyskinesia I would suggest you consider how much time you have left. That is a hard thing to contemplate, but if you are close enough to end of life you have nothing to worry about; start the C/L and enjoy life. If you are under 50 you have a much more difficult question to ponder. Best wishes on your journey.
-
Umm… what an odd question. PD symptoms are so varied and unpredictable and the question so broad that I am not sure it can be answered without going into excruciating detail, but let me give a couple examples of how I adapt:
- I am still driving, but I cannot drive when the meds are off. This limits me to short trips. If the meds wear off before I get home, I have to pop the pills and wait the 1/2 to 1 hour for them to kick in. What do I do in the meantime? The same thing everybody else does — I fiddle with my phone.
- In the morning, when the meds are totally off, it is nearly impossible to get out of bed. Getting out of bed requires coordination of a number of muscle groups and the ability to move quickly enough to generate some momentum to propel one onto one’s feet. Can’t do that. It takes minutes to struggle to my feet and then the back pain amps up instantly, but I generally refuse to rely on any assistance. If I can’t do it myself, I would rather just lie there and wait to die.
- The most frustrating aspect of PD to me is the loss of mobility. I was hoping that would not happen for another 6-10 years, but it is what it is. When the meds are off I try to find other things to do. My hands are largely unaffected by tremor, so I can type, though I can be very slow (5 words a minute at times), so I write. I write stories, I write books, I write about my core beliefs and how/why I formed them.
These are but a few things I do to keep my sanity and keep going with PD.
-
First – learn all that you can about the disease. We were caregivers once and knew nothing — how helpful it would have been to understand what our patient was going through. Now my wife is a caregiver again, but I have changed roles to patient. It is much easier to be a caregiver, and we thought we were going through a tough time then.
This year is a big year of change for me: I am losing mobility. I have nearly given up driving, only taking short trips when I know the meds are fully on and should last until I get home. Arthritis and chronic back pain are the icing on the cake and complicate everything. My dear companion of 44 years is supportive to the point that I worry about her health. So, the second thing a caregiver needs to do is take care of themselves.
And the third item I would suggest is to give yourself a break once in a while. Give yourself a few hours off now and then. Neighbors and friends will gladly give you some of their time so you can go out for an evening, or even hide away in the bedroom for a nap if your partner cannot be left on his own.
-
A year ago I pinched the sciatic nerve and had surgery to remove part of a ruptured disc. Since that time the PD decline has accelerated rapidly. My spine, shoulders and hands are full of arthritis. While the pain from arthritis is tolerable I still have a lot of lumbar pain that the surgery was supposed to alleviate. Anyplace that hurts hurts more when the meds are off.
Because I am on Azilect I cannot take opioids, none of which I could never tolerate anyway. I seem to spend a lot of time at the pain clinic getting epidurals and other injections to tame the pain. Also lots of physical therapy to keep things moving. When I get up in the morning all the muscles in the lumbar region tense up and spasm. I use a TENS device in the morning on my lumbar region. That seems to help things relax back there.
-
We are also replacing flooring. We have selected the so-called luxury vinyl plank for a number of reasons: it has some texture so will not be too slippery; it has a little give to it, not like hitting concrete when you fall; it is durable and easy to clean.
We are both sick of carpet. While it is better to fall on carpet, it is too hard to keep clean and that has to factor into our decision. Life is too short to spend it cleaning.
-
Yakim, l have trouble with my trapezius muscles tightening up. They connect the shoulder blade to the neck and will feel like a hard bump at the top of the shoulder. A physical therapist can work them out. It took about 6 weeks of therapy to get mine to relax, but it is worth it. Untreated it can become very painful and lead to cervical radiculopathy. You don’t want that.
-
Oops – replied to the wrong post above. Here we go again:
If you are on C/L, look for a correlation between off time and waking. I found that 6 hours after my last dose (usually between 6 and 8 PM) I would wake up. That was enough to get my neuro to add a small dose right before bed. Now I get 6 hours uninterrupted, and a nap after my afternoon dose covers the deficit.
-
If you are on C/L, look for a correlation between off time and waking. I found that 6 hours after my last dose (usually between 6 and 8 PM) I would wake up. That was enough to get my neuro to add a small dose right before bed. Now I get 6 hours uninterrupted, and a nap after my afternoon dose covers the deficit.
-
Beth, Having been both a caregiver and now a care-recipient, I suggest you try to look at the situation from their perspective. It appears you are living independently. You seem to be high functioning because you participate on this forum. You probably appear quite normal when the meds are on, which probably accounts for most of the time they see you.
Denial is a survival mechanism. We all do it. When you told them of the diagnosis, unless they were already familiar with PD they probably did not know how to react, so they did not react at all. They went home, read Wikipedia, thought “So that is what will get Mom.” Later, they may or may not have had the private discussion every child hates about what to do with Mom when she can no longer live independently, then hoped that day never comes. I would not interpret their lack of response as not caring but rather not knowing how to respond.
You are part of the equation: you need to decide how you want them to react, then you can try to stimulate that reaction. If you want awareness from them, ask one of them to go with you to the next appointment with the neurologist. Sit them down at the computer and have them watch a few Youtubes about the effects of PD. There are some excellent videos out there and sometimes hearing it from someone else can make a difference.
People who are not accustomed to discussing deep feelings have to be coddled and sometimes dragged along the way to get to the point where they will open up about what they are trying to deal with. They may react with “I’ve got problems of my own,” either expressed outwardly or just held inside. Whatever you do, tread carefully unless you are certain how they will react. You know them and your relationship with them better than anyone else so you should be able to steer them in the right direction. You suggest your relation is fairly close with them, but you may have to coerce them into a frank discussion of what the future looks like. For everyone’s sake this will go better if you are an active participant. Don’t wait until you cannot be part of the decision.
See if you can find some counseling through a local PD support group. Your neuro should be able to provide you with some contacts.