Friday, September 3, 2010
Thank you so much for your question and the kind comment about my husband.
Your question was "I have PD and I'm 48, could you please tell me if your husband was/is extremely tired all of the time with PD? I never feel good and I still work but it is all I can do to get through the day."
I am very sorry to hear that you have joined the Parkinson's community at such a young age. Because of your age, you fall under the category of Young-Onset Parkinson's. Unfortunately there are more and more people 50 years of age and younger being diagnosed with Parkinson's. It is definitely not an old folk's disease any more.
To answer your question about being extremely tired all of the time with PD - the answer is "Yes". Being tired is very common among PD patients. It takes a lot of mental and physical energy to think and to move; and the amount of energy used depends on how far along you are with PD. There are other common PD related reasons why you might be tired.
Being tired can be a symptom of taking too much levodopa PD medication. Prescribing PD medications for patients is a very complicated thing for all doctors treating PD - not all patients have the same symptoms or amount of symptoms -and- the disease itself keeps progressing at different rates. That is why your doctors may have to keep changing the dosage, times per day, or the combination of PD medications (sometimes called a "cocktail"). You should discuss being so tired with your primary care PD doctor - they may need to change your medication dosages or types of medication.
Another reason might be the timing of when you take your medications. Unfortunately proteins and PD medications don't work well or play well together. You may need to take your PD medications at least 30 or more minutes "before" your meals -or- 1 or more hours "after" your meals. I would try the 30 min/1 hr combination first and then experiment with the timing. The reason for this is, if you take your medications too close to your meals [meals which have protein foods, such as meat, poultry, and dairy products, and almost all meals have proteins even veggie meals] - then your body has to make a decision as to which to process first - the protein or the levodopa PD medication. Your body will always choose to do the natural thing of processing the protein before the PD medications. Then by the time your body gets around to processing the PD medications, the effectiveness of them is depleted somewhat, and you aren't getting the dosage of medications that your body needs.
At first it was very hard to figure out how my husband could take his medications around his meal times and vice versa, because he was taking his PD medications so many times during the day. We were so used to three main meals a day and eating them at the same time every day. My husband did find a way to juggle eating and taking his medications by eating smaller meals and snacks during the day, instead of just 3 large meals. That seems to work out better for him. We also learned to prepare more meals for him with less protein in them. When we don't want to cook and prepare a separate meal just for him, or he wants to eat something different, we buy some of the frozen microwave meals for him to pop into the microwave - looking for the ones with lower protein - so that he could eat them around his medication times. He can buy different meals that he really likes. The lower the protein amount in what he eats determines the shorter amount of time when he can take his medications next to his meals. We also tried to keep in mind that other members of the family still needed to eat meals that they enjoyed with their familiar proteins; but it was amazing that everyone started to like the same foods. We still eat our family three meals a day together - he just doesn't eat as much as previously. Eating with family members is important, if not just for the socialization. If we want to go out for dinner, eat with friends, or a meal at a restaurant, then he times his medications before the big meal, so that he can enjoy what everyone else is having (including when he wants to eat a big steak or hamburger, etc.). It's a juggling act, but you learn to get and keep more than one ball in the air at a time.
He also carries with him, when we go out of the house, his small fanny pack that has a small bottle of water, his pills, a small container of applesauce (easier to take the bigger pills), plastic spoon, and small snacks of different types. Snacks include cookies, fruit bars, different flavors of applesauce in small containers (they have some really great flavors now - including peach mango, strawberry banana) etc. People don't seem to mind if he takes out his bottle of water to take a pill (sometimes he has to have his medication right away). Whenever he needs to eat a snack, he goes someplace out of the way and munches. We have had only one person to question him in a store about eating; when he mentioned having Parkinson's and the need to have a small snack, they apologized for the question and offered to find him a chair in the store. We have found that the majority of people are very kind and thoughtful when you explain to them about having Parkinson's.
On our support group's website, click on the link "Books & Publications" and go to almost the bottom of this page and you will see a list of excellent books about diet, nutrition, and Parkinson's.
There is a FREE book on nutrition that you can order from the National Parkinson Foundation (NPF) entitled "Parkinson Disease: Nutrition Matters by Kathrynne Holden, M.S., R.D." It is listed on the NPF website's catalog page --- http://tinyurl.com/27u8z8d --- Holden's book is excellent and has lots of information in it specific to Parkinson patients, their meals and snacks. To find this book on the NPF page, go to the top of this catalog page (the previous link will get you there) where it says "Selections are available in the following categories..." and click on "English - Specialized Topics". There are numerous other books listed on these catalog pages that might interest you. Note: You will have to create a free membership login to order any publications from them.
You may also find that taking one or more short naps or breaks during the day will help you. You mentioned that you are currently working. Perhaps if you discussed your illness and the need for a short break or catnap during the middle of the workday with your management, they will not mind if you use part of your lunchtime to do this. Set an alarm clock, watch, or kitchen timer and take a short nap; or even just putting your head down on your desk for a few minutes break will help you. You will be amazed what a catnap or break can do for you - contrary to popular belief cats have something positive going on with their naps. BTW - Discussing Parkinson's with your boss or co-workers is a whole different discussion topic.
When you get home in the evening, be sure to take a short nap or break before gearing up for all the "stuff" that needs to be done on your other jobs - you know, the jobs like housework - cooking - laundry - etc. Also be sure to get enough sleep at night. Give yourself permission to take a little time for you. If you are having problems with sleep (PD patients sometimes do) talk with your PD doctor about this - they can change your medications to help you.
I hope that you are seeing a neurologist who is a movement disorder specialist, in addition to your primary doctor. Parkinson's disease falls under the Movement Disorder specialty of Neurology. Neurologists, who are movement disorder specialists, can really help you to manage your Parkinson's symptoms with expert up-to-date information. In addition to our family doctor, my husband has a local neurologist for his routine PD care, and also for just in-case he has to go to the local ER, hospital, etc. Then on a regular basis he sees neurologists at the Movement Disorder Clinic at the Medical College of Georgia (Augusta, GA), who are specialists in Parkinson's disease. It has made a significant difference in the care of his Parkinson's.
If you are having problems of any type (like being tired) - please don't wait until your next scheduled appointment if it is months away to see your PD doctor - call and make an appointment to see the doctor sooner. Being really tired can cause a lot of other problems with Parkinson's. "Nip it in the bud" before it gets to be a bigger problem. Even though being tired may be a common PD patient symptom, there are ways to help you. Also, there could be other reasons for being tired that are not even PD related problem, it is better to see your doctor and find out what it is.
Freida, I hope this information helps you. If you are ever in the Columbia SC area when we have our support group meetings, please come and join us as a guest. Information about our meeting times and topics can be found on our group website. Please do not hesitate to contact us again with your questions.
Monday, July 26, 2010
This will be a short entry, because I’m really tired, and it is quite late. We both have had several days of not much sleep. CW and I have been a anxious about his upcoming surgery and have had trouble sleeping. Drilling holes in a person’s head can cause one to have concerns. I’m happy to say that CW’s surgery went well today.
5:00 am – We arrived early at MCG outpatient surgery registration, and they actually started early to process CW for surgery.
7:30 am – Started the MRI to do the mapping of CW’s brain
9:50 am – MRI finished and time to do the calculations and analysis of the MRI mapping results
11:20 am – Started surgery using the MRI mapping
1:50 pm – Surgery completed and CW was moved to Recovery
1:50 – 8:00 pm – Right after he was taken to Recovery, CW was awake enough for me to tell him that our friends, Bill and Kay were there to check on him – I asked if he wanted to see them – CW’s answer was “Yes”. They came into the Recovery room one at a time, and briefly talked with CW, left, and then CW went right back to a deep sleep. [Note: Bill had DBS last fall. Bill and Kay have been a wonderful resource for us – letting us know what to expect based on their experiences – playing it forward to us.]
The Recovery staff and I waited - and waited - and waited for CW to come out of the anesthesia. He would sort of wake up, and when asked - “Mr. Gantt, can you wake up?” – CW’s response was an emphatic “No!” and he would go back to sleep. “Can you open your eyes?” - CW’s response was a definite “Go A-Way!” and he would go right back to sleep. He would mumble off and on periodically with his eyes closed.
Finally around 6:45 pm he woke up, said he was hungry and thirsty. They asked him if he wanted some Jello – “Maybe”. After a few bites of Jello, he said he wanted “real” food. Unfortunately since he was still a little groggy, they have him on a liquid diet. CW finally reluctantly consumed a small bowl of beef broth and Italian ice with mumbles I won’t repeat, and went back to sleep. Eventually he started coming around - knew where he was – was asking questions about the day, time, people around him, etc. enough so that he could transfer him to Neurosurgery ICU.
8:45 pm – I stayed around long enough to see CW settled in his new Neurosurgery ICU digs and left for the motel to get some sleep. I am exhausted from lack of getting restful sleep for several days.
Tomorrow, if CW is OK and can walk a prescribed distance down the hallway with Physical Therapy folks, they may let him come home. Hard to believe that he has a hole in his head (didn’t we always know that) with wires, and he can come home!
The current plan is in 2 weeks they will do the opposite side of his brain. Then 2 weeks later they insert the 2 neurostimulators/pacemakers and hook up the 2 corresponding wires from the brain. Then 2 weeks later we come back to turn-on the pacemakers – with several more visits later for fine tuning. We will be like hamsters running in a wheel for the next several weeks.
When his doctor talked to me to tell me that CW’s surgery went well, he reminded me that DBS does not cure Parkinson’s – it only (hopefully) helps to reduce some of the symptoms of PD and side-effects of the PD medications. Also to be aware that we won't know how well these surgeries will help until the fine tuning is done. We may see a little benefit up-front, but the proof is in the pudding after all the healing is done.
11:30 pm - So again, it is late, I am really tired. I’ll enter more details later.
To be continued…
These Blogs about CW's (my husband) DBS Surgery Procedures are from my personal notes and diary; written as CW went through his DBS (Deep Brain Stimulation) procedure. Please note that I am not by any means a medical expert or professional. I’m just providing this information with the hope that our own experience; what we have learned through trial and error; and what we have learned from reading and research, will help others going through or considering DBS surgery. I think that "playing it forward" (sharing) is the best way to explain why I'm doing this.
Note: As of July 17, 2010 CW has had his three DBS surgeries, and both of his pacemakers have been turned on and have had their first tuning. CW is still recovering from the surgeries, and is doing well. – Dottie –
Monday, July 19, 2010
Saturday, July 17, 2010
Note: As of July 17, 2010 CW has had his three surgeries and both of his pacemakers have had their first tuning. He is still recovering from the surgeries. – Dottie –
At the beginning of this year, 2010, CW made the difficult decision to have Deep Brain Stimulation surgery (commonly known as DBS), to be performed at the Medical College of Georgia (MCG) in
DBS consists of 3 separate surgeries
Thursday, June 11, 2009
Once Parkinson’s disease (PD) has to progressed to a certain point, PD patients and their caregivers often find that managing and balancing PD medications becomes a difficult task. It is sort of like trying to hit a moving target – because as the disease progresses, the combination and dosage of PD medication (sometimes called a “cocktail”) needs to be adjusted in-parallel. Just about the time you think you have the PD medication figured out, the disease has progressed or symptoms have changed.
A member of our support group sent me some email on this topic, and I thought that their comments regarding how they manage taking PD medications might be of use for others with “similar” situations. I am "not" suggesting that everyone should use this method of managing PD medications, but their solution is something to think about. With their permission I am sharing this excerpt from their email.
Because they don’t feel comfortable using their real names, I have changed their names to respect their privacy.
Beginning of email extract…
“I have been setting up Jack's medicines for him. He was reluctant, but is very agreeable to it now. In the past I have only done this when he has been in his dark holes, or having his surgeries. A couple of weeks ago, it just seemed everything was not as good as I thought it should be and we were having problems between us because of it. Overall, everything has been much smoother now. I set them up for the week, he checks them to be sure I am right, then he is in charge of what time he wants to take each dose and if I have concerns I glance at his case to see if he is on track. (Before, I never knew for sure what was in the case to be sure of what I was observing) Yes, he has found some errors on my part a couple of times! I really feel like he may have dropped pills in the wrong compartment resulting in taking too much at one dose and not enough at another! I have found pills on the floor and never knew if he was aware it dropped or thought it was in his case. This way, we both know what is in the case is accurate and when I see side effects, I can better determine if it may be medicine related or otherwise. Because of his coordination, he was setting up his for only one day at a time and of course he was more apt to make a mistake because of rushing. The first couple of days, I hid the stash so I would know he wasn't getting extra. He now knows where I keep the stash but has agreed to let me know if he takes anything extra. Since the stash is not in his sight all day, he is less tempted to grab an extra Sinemet and has done a better job taking his doses on a regular basis. Whenever he would take an extra Sinemet, his body would forget it was time for his regular dose... thus everything was off kilter! The main problem is since I wouldn't know exactly what he was taking I was misinterpreting the side effects. For now, our whole life has been more smoother! When I see the Dyskinesia or freezing, I am better able to judge where he is in his cycle of doses to know whether there is real concern or not. Many times over the years, I would only find out a few days after when he had decided to try living without a certain drug or adding extra... and that was after stressing why his medicine was no longer working properly... only to find out he had been making adjustments without my knowledge! I try to remind him that only he knows how he feels on the inside, while I can only judge how he looks on the outside and it takes both of us to fine tune his medicine. As a result, we have actually cut back on his Ativan... but we both have been on board (along with the doctor) to know when enough is enough!”
End of email extract…
Tuesday, May 19, 2009
Short version "About Us" -- My husband's name is CW (he has PD). Yes, CW just goes by his initials. I think it is a "Southern" thing to use just initials for a name. CW has a degree in Electrical Engineering. My name is Dottie ( the care partner/caregiver). We are both retired research engineers. We are both "Type A's" and "Control Freaks". To make any type of decision, we want as much data as possible - no matter how small (like buying groceries) or large (like buying a house or buying a car) the decision is.
The diagnosis -- I started noticing that CW was having little difficulties here and there with dexterity of his hands, and he was exhibiting some "weird / unusual" symptoms. Sometimes the area around his mouth would look like when a cat or dog sniffs at you (picture how you look when you scrunch up your nose and your upper lip scrunches too). At night, while he was sleeping, CW would kick me from all the way across our king-size bed to my side of the bed; and he would not remember kicking me, but I had the bruises to prove it. CW's handwriting was getting smaller. There were other subtle and not so subtle changes; and there were more and more changes, which when combined they created enough information that something wasn't quite right.
CW and I hadn't said anything to each other about his changes, until one day at breakfast our conversation went sort of like this.
Dottie - "CW, have you noticed that you do ..." And then I mentioned the different symptoms I had observed.
CW - "I didn't want to say anything to you, because I wasn't sure that it was happening to me."
We compared notes with each other, and we started keeping a log and collecting data of incidents (remember we are engineers). Together we decided that something was definitely going on, but we didn't know what that "something" was.
For many months CW made visits to many types of doctors. He saw internists, ENTs, cardiologists, and other types of "...ogists" doctors. There were many different battery of tests - CW's eyes were checked, X-rays, MRI's, CAT scans, blood tests, urine tests, etc., etc. I don't think there was any part of CW's body that wasn't examined. We heard a lot of "We don't think it is ..." -or- "Perhaps you should see Doctor ..."-or- "We aren't sure, but we think it might possibly be ..." CW and I felt like we were chasing our tails. We were getting very stressed hunting for the diagnosis, and CW was slowly getting worse. Was the stress causing the disease to progress? - Perhaps.
The worst part of all of this was not knowing what "it" was. We were thinking and imagining the very worse disease possible. Finally, our family doctor recommended that CW see a neurologist our doctor knew of. Even though CW had already been to see another neurologist, CW went to the recommended one for another opinion.
I still remember that day. I remember what I wore - what CW wore - how the doctor looked - and the tone & sound of the neurologist's voice.
Neurologist - "I have some good news and some bad news." It seemed like there was a very long pause of pregnant silence. "The good news is that you have Parkinson's disease; and the bad news is that you have Parkinson's disease."
CW and I looked at each other, shocked, not knowing what to say. There was disbelief. I just knew that the neurologist had to be making a very big mistake about his diagnosis. Even though we had talked about and anticipated the very worse disease, I never expected to hear the word "Parkinson's". I felt like I was going to faint and be sick at the same time.
CW - "Are you sure?"
Neurologist - "Not 100%. You see, Parkinson's is a very difficult disease to diagnose. There is no routine test (i.e., X-ray or blood test) I can do that will 100% can confirm Parkinson's disease. We would have to examine a slice of your brain under the microscope to determine if you had Parkinson's; but then if we did that, you would have to be dead to perform this type of biopsy test."
CW - "Well what data and/or criteria are you using to determine that I have Parkinson's? (CW still behaves like an engineer!)
Neurologist - "None. The conventional method we neurologists use for diagnosis of Parkinson's includes:
- The presence of majority of the four primary symptoms - resting tremor, or trembling; muscle rigidity or stiffness of the limbs; balance problems; and gradual loss of spontaneous movement (slowness of movement)
- The absence of other neurological signs upon examination (a process of elimination)
- Responsiveness to Parkinson's medications, such as levodopa"
Dottie - Silence
Neurologist - "Based upon the fact that you exhibit a majority of the four primary symptoms of Parkinson's, I think that you should try to see if you have some responsiveness to a Parkinson's medication, such as levodopa. Do you want to try that?"
CW - "Will the medication harm me?" -and- "What have I got to lose?"
Neurologist - "No it won't harm you." -and- "You have nothing to lose. You may learn what you do have, and we can start treating it."
CW was given a sample of a form of levodopa. As a result, when he took the medication, some of his weird and strange symptoms went away. And thus the diagnosis was made. Much to the credit of CW's neurologist, he did suggest that CW get a second opinion (which is always a good thing to do).
On one hand, it was a big relief to have the name of a disease that we could associate to CW's symptoms; but on the other hand, hearing the diagnosis made both of us very afraid. We thought we knew what Parkinson's was, but we really didn't.
I don't know what it would be like to be in CW's shoes and be told - "You have Parkinson's". To this day, I have no idea what CW really felt like when he learned that he had Parkinson's. I know that I cried for many days - I would get in the shower and cry so that CW wouldn't see me crying. I got depressed. Some days we didn't know what to say to each other about the diagnosis; so silence on the Parkinson's topic for those days was OK.
At some point we realized that we had to take charge; and we both started researching as much as possible to learn about Parkinson's. The internet was a big help, but we knew to use it with caution. We read books wherever we could find them. We almost became obsessive in trying to learn as much as we could about the disease. Some days it was hard to read some of the information, because it was frankly scary. Other days, I felt like - OK, I can deal with this. CW and I discussed how we were going to tell our family, friends, neighbors... (how we did this will be a topic for another blog posting). We both went through such a roller coaster of emotions. We now had this Great BIG Elephant in our life!
Note that I often use the word "we" in my posting. When a patient is diagnosed with Parkinson's, it "absolutely" becomes a family affair.
And so, that's how our/my journey of living with Parkinson's began. At the time this journey started, CW and I did not know how much his having Parkinson's would change our lives. Nor did we know about the amazing and wonderful people we would meet because of Parkinson's.