- Tips on Living -

 

When you are diagnosed with Parkinson's there are very obvious and immediate changes that take place in your life as already know. The things that seemed so subtle before become nagging annoyances on a daily basis. It affects you not only physically but emotionally. I have found that the hardest part of that is the frustration that comes about when you try to do the things that you have always been able to without thought or effort in the past.

Then there are the drugs. There is nothing out there and available that does not have some kind of side effect and for most of us they do not completely alleviate the symptoms. This is completely aside from the fact that they often create their own separate new set of symptoms that you have to cope with.

One thing I will tell you that I know for sure is that you must remain vigilant about living your life. Do not let it consume you and take away your drive to do the things you want to do. If anything, encourage yourself to push harder to do those things. Do not let it break your spirit. Try to live your life with a greater feeling of appreciation for what you have and the world you live in.

A strange thing I have noticed is that as you learn to cope with it and accept it is that there is almost a return to innocence in life. You take on a different view and look at the world just a little bit differently. You learn to take the time and notice things a little more and often realize what you have overlooked in the past. This to me is a positive aspect in my life and it has brought some good changes for me. There is a fantastic book for to read called "Peace is Every Step" I highly recommend it.

Make no mistake, you will undergo drastic changes in your life.

You Will Lose Your Job

It is inevitable that this will happen and this is the first of a couple of major changes. Your employer will have sympathy for you, but remember that they too do not understand and they do have a business to run. I went from be the most able bodied person in my company to sitting at my desk 15 to 20 hours per week, taking FMLA and feeling somewhat bitter that I could not perform to the level that I always had. I was poked fun at, talked about, pressured to do things I physically could not do and made to feel like I no longer belonged there. I was even sat down and told at one point that they had finally determined that I could not be faking it for such a long period of time. I turned over medical records, got notes from Doctors and was completely open and honest about everything that was going on. No matter what I said or did they still did not understand.

Be prepared for this and know that this is actually a good thing in your life. It actually opens the door for opportunities that you did not think you had. Your Employer will do what they can to try to do the right thing for you and them both. It is not a bitter parting.

Instead of dwelling on it and feeling bad you must immediately take steps to live your life the way you want to. Get out of bed every morning and embrace the day. Let the Sun shine in your morning, turn on your favorite song, go for a drive in the country. Do whatever it is that you like to do. I cannot emphasize enough how important that is.

Evaluate your skills and abilities because you are going to have to work for yourself if you want to succeed. You can do it, everyone has a niche or special skill. Put those skills to use. You can probably forget about SSDI because most of us are not considered 100% disabled and they can make it a painful process on top of that. The sooner you make this happen, the more content you will feel, just remember to be patient as nothing happens overnight.

Make a list every day and accomplish what you can. I always put more on there than I know I can get done so that I have things to do. I tend to plan weekly goals now, not daily. It is incredibly important to stay busy. You will have to adjust your schedule to what suits you and to work around the side effects you experience from the medications. Do not be in a big hurry to get out the door. Make sure you feel good both mentally and physically before you leave each day. Things will go more smoothly if you do.

Pay your bills on time or early. It averts added stress that you do not need. Remember that your credit is more important to you now than it ever was.

Do not hide from it, be open and unafraid to talk about it. Yes, people will look at you and they will ask you if you are ok. It is more awkward for them than it is for you. Be proud of who you are and do not worry about what other people think. They do not understand either.

You Will Most Likely Lose Your Spouse

Remember that you are not the same person that they met and they do not understand no matter how hard they try. It will be for some other reason and they will tell you that your illness has nothing to do with hit.

You cannot lay blame to them, it may actually be harder on them than it is you and deep inside they honestly do not want to hurt you.

Do not be surprised when it happens; it will be sudden and it will hurt, just know inside that it is ok. It ended up being a welcome change in my life.

Do not fear it; you will meet someone else that loves you for who you are now, not for who you used to be. You will have to learn to focus on yourself for a while, but when you do meet that person it will be more fulfilling than you ever imagined.

Do not let it hurt yourself confidence and do not think about being lonely. You are spending time with someone that knows you better than anyone else; yourself. You will get through it better than you think.

The Drugs

I guess in short all you can say is 'What a hassle!'

Most of us will start out on a regimen of Levodopa because this is actually a tool used to diagnose your condition. If it works, it must be Parkinson's. Then you are faced with the neurologists trying to sell you other name brand drugs and medications that can have lasting side effects. If you can tolerate the dopamine, then I would suggest doing so. It takes a lot of time and practice to learn how to manage the side effects, but it is doable.

Do your research before accepting any new drug regimen; There is a lot of information out there on these drugs and you need to read it very thoroughly before you start taking them. Get a second objective opinion if you are still unsure. Go to our links page and follow the links under medical dictionaries for information.

Read every word; it is very important to read the food and drug interactions from several different sources, including the drug makers website. Many of them produce their own generics and the requirements for producing generic drugs are not the same as those for brand name drugs.

Stay away from the pain killers; it is not going to do anything but leave you sitting on the couch or lying in bed which is the very last thing you need to do. Muscle relaxers may help you sleep, but I do not recommend taking them more than one time per month. When you do take them, take one before bed and plan on taking the entire next day off to rest. Do not do anything stressful, watching movies and snacking throughout the day is what I prefer to do. I do not even answer the phone. Take some time off from your other medications, whether it be taking it further apart or not taking them at all. It is a good break sometimes.

If you take Dopamine be very diligent about knowing how this drug affects you. It can have some pretty prominent side effects. Even though it has been available for some time, I believe it warrants further study on how it affects the neurons that control muscle movement.

What I find with Dopamine is that I do better if I take it as needed rather than on a schedule. This is not what the Doctor's will tell you. I try to let it wear off almost completely before taking another one.

In my case it is the left side of my body that is affected which is my dominant side. My reaction is pretty consistent with Sinemet (Carbidopa-Levodopa). I take it more so now for the lack of movement in my arm than for walking.

About 3 hours after taking Sinemet I experience a lot of involuntary movement in my left foot. (I actually wear an ankle brace to help control the movement a lot of the time) The use of my arm is somewhat normal, but around this same time I will go through severe muscle cramping in my calves and throughout my left arm. This typically lasts about an hour, sometimes more. As you may know, this can be quite painful.

When You Are Experiencing These Types of Side -Effects

There are a couple of things you can do. First of all, stop what you are doing for a moment, stand up straight, then consciously relax your entire body. This will provide immediate relief for a moment.

Take a short break and sit or lie down for about 15 minutes. Do not try to move around, just get into a comfortable position and stay there for a few minutes. This drug creates a feeling of hypertension and slight anxiety. Try not to think about it. I will often massage my affected foot which helps tremendously.

Wear loose fitting clothing. You will feel much more comfortable, this includes shoes. I typically wear TEVA Sandals or no shoes at all.

Eat protein, it counteracts the Levodopa directly. It can be eggs, peanut butter, nuts or anything high in protein helps. Eat enough so that you are not hungry. Drinking Pomegranate Juice or Blueberry Juice seems to help a little also. It takes a little time for food to counter the effect. What I often do is calculate when to take my pill and then eat about 15 to 30 minutes after taking it. This allows some time for absorption without the food cancelling out the effect of the drug entirely.

If you are home for the day and do not have things to do, try skipping a dose if it is close to bed time.

Dopamine Agonists: Read the side effects, I took Requip (Ropinirole). I immediately felt like on was on something and stopped taking it. I started taking it again after a month or so had passed and dealt with the side effects which eventually became less noticeable. I took it for 3 months. Initially I thought it was helping, but soon realized that it was just a placebo effect in my case and quit taking it.

MAO Inhibitors: I will not take these because of the possible dangerous and lasting side effects. Definitely get a second opinion or even a third with these, especially if you experience orthostatic hypotension. Research these drugs heavily, many of them are unproven.

I have chosen to use only Sinemet and managing it very carefully so that I am not increasing the dosage. It is important to try to maintain the same dose for as long as possible or even reduce it if you can. It will become unmanageable and ineffective if you start taking too much.

I take a few supplements that I feel are very important:

·         L-Lysine to me the most important. It is an Amino Acid that your body requires, but cannot produce on it is own. It strengthens your immune system. I have only had one cold and not had the flu once since I started taking it 6 years ago. It takes some time to build in your system, so you can still expect to get sick within the first year. Take 1000mg daily and if you feel the tickle of a cold take 4000mg spread throughout the day for a few days. It works.

·         Arginine: This is another Amino Acid. In the body, the amino acid Arginine changes into Nitric Oxide (NO). Nitric oxide is a powerful neurotransmitter that helps blood vessels relax and also improves circulation. (WebMD) It is also thought to be good for your heart. I notice a difference when I take 1000-2000mg daily.

·         Vitamin D: I take at least 5000mg daily, preferably gel caps. If anything it will keep you in a good mood. Check with your doctor on dosage as it can have adverse effects when not taken properly. (It must be monitored with a blood test.)

·         Omega 3 and DHA: I take about 6000mg daily. There is a noted lack of DHA in men with Parkinson's. OHSU is currently conducting a clinical trial to determine if Omega 3 Fatty Acids are effective in controlling Dyskinesia caused by Levodopa (this is what precludes your inability to take this drug over time). It is currently recruiting participants. Make note that they are only estimating to enroll 40 participants in this 1.5 year clinical trial. That's .002% of the estimated Parkinson's population! This type of Clinical study is a total waste of time and resources in my opinion. This type of research must change.

On a brief note, Glutathione does show some promise without having harmful side effects, but is not effective because it is not able to penetrate the blood barrier in the malfunctioning or dead cells in the brain, so going out and buying it in pill or supplement form probably will not do you any good. Bastyr University in Seattle is conducting studies on this with an intranasal spray in an attempt to overcome this obstacle. (Intranasal Glutathione in Parkinson's Disease) Again, estimated enrollment is 34.

It never hurts to take Vitamin C or Multi-Vitamins. I do recommend that if you are going to take Vitamin E tat you be thoroughly examined by a competent Doctor of internal medicine. Some studies have shown an actual increase in incidences of prostate cancer in subjects that took higher doses of a-tocopherol, so it remains an unknown at this point whether it is the same situation with other types of cancer. Believe it or not a Rheumatologist is quite competent to do these types of examinations and testing and will cost you less than other Specialists.

It is of course always recommended that you obtain the majority of your Vitamins from the foods you eat. Keep in mind that Malabsorption is common in Parkinson's patients, so you will have to change your Diet to accommodate you needs. (see the Diet section)

Your Body

You already know that your body has utterly betrayed you by the time you are diagnosed. It is very important that you understand what is going on. It takes a lot of research to really get a grasp on it. The information is there, but it is not necessarily in easily understandable terminology. I have spent countless hours researching this and translating it it to something meaningful. I will try to break it down and summarize it so that it is a little easier to digest.

It is imperative to understand that what is happening is not necessarily a 'physical' problem even though it manifests itself in that way. It is not electrical and it is not muscular. It is much more akin to chemical reactions going awry in your brain or better yet the lack of chemical interaction between your brain cells and the nerves that activate your muscles and initiate movement.

Alpha-synuclein: Get used to hearing this term because it is commonly referred to in Parkinson's. Alpha-Synuclein is a protein that is commonly found in the healthy human brain. The "misfolding" of this protein is considered to be a clinical feature of Parkinson's. Unfortunately it is currently not possible to test for this problem while you are living. They are working on it, trust in that.

The problem lies in the fact that it is not understood what function these proteins play in the healthy brain. This is true in other neurological diseases also although the proteins may be different. What is known is that there is an aggregation or accumulation of these proteins in the brains of persons afflicted.

It is believed that these proteins are unlike most proteins which are rigid and definitive in form because they have the ability to 'fold' or change their structure, being more fluid in structure. Think of it in the terms of making gravy. If you do not stir it correctly as it heats or you do not heat it enough you end up with clumps of batter that do not dissolve properly. This is where the term misfolding comes from.

The problem lies in the fact that it is not known what form these proteins take on in the healthy brain because there is currently no way to test while the organism is living and therefore no way of knowing which way the protein should fold. It is considered an 'Amyloid Fibril' or 'Amyloid Plaque' when it becomes a deposit even though this is technically improper terminology. There is significant research going on in this field.

As the misfolding occurs it creates a toxicity to the surrounding nerve cells creating what are known as 'Lewy Bodies'. Lewy Bodies in short defines an abnormal accumulation of proteins inside the nerve cells. These cells are located in the 'Substantia Nigra' (black substance) which is located in the midbrain. These are the cells that are known to die in Parkinson's.

Obviously there is much more to it than what I described. There is other research that points to precursors of this protein aggregation. One belief is that it begins with the breakdown of helically folded 'Tetramers' (which is a molecule made up of four Monomers, Alpha-Synuclein is a Monomer) is a precursor to Alpha-Synuclein aggregation. The aggregation is believed to be accelerated by environmental and other factors. It is hypothesized that stabilizing the Tetramer molecule could inhibit the breakdown leading to the aggregation. In this concept it would be prudent to attempt to determine what causes the Tetramer to break down as well as what causes the aggregation to find a pathway for treatment. The Tetramer could theoretically be the core cause of the breakdown and resulting cell death associated with the protein misfolding. This could mean that the aggregation is simply a byproduct of the Tetramer breakdown. Again, there is a lack of the massive empirical data to support this theory leading to my belief that there is an insignificant amount of data compiled in one place for researchers to review. As you can probably see this is quite complicated, but will at least give you a basic understanding of what they believe is going on.

In essence the cells in the Substantia Nigra cease to produce Dopamine which is what creates the pathway for the cells to signal the nerves to act upon the muscles and allow proper movement.

Terminology

A lot of the terminology used in research and by Doctors is confusing and often difficult to understand. Listed below are some of the common terms used in Parkinson's and what they relate to.

·         Tremor: This is not always present at onset and most people associate this as the primary symptom of Parkinson's. I do not experience tremor at all and never have. I tend to believe that tremor may in fact be a different variant of Parkinson's that is present when a particular set of cells are affected. That's just my take based on the research I have done, but it is a definitive sign of the disease at some point for most.

·         Bradykinesia: Slowness of movement. This is a cardinal sign and is typically corrected with Dopamine therapy. It is also variable and can change based on your mood or activity. It is the primary symptom in my left arm. Levodopa greatly improves this for me, but at the same time causes Dyskinesia in my left foot. This definitely warrants further investigation because it is almost if there is a massive imbalance in the way that the dopamine is absorbed by the body. It gives me the distinct impression that the dopamine is overexciting the cells that control movement in my foot, as if those cells and neurons are getting too much. It is a juggling act that I deal with daily by trying to balance my medication dose with my eating habits and activities.

·         Dystonia: Involuntary muscle contractions. This can typically be associated with cramping, muscle ridgity and contractions. Some of the signs are twisting of the body, turning in of the foot, tremors, and abnormal posture. The cramping and the turning of the foot occur daily for me, but in my case it is a direct result of taking Levodopa. It comes on like clockwork after taking the medication. It never occurs when I am off of my medicine.

·         Postural instability: This is normally seen in later stages of the disease and put in simpler terms translates into falling down because of impaired balance.

·         Orthostatic Hypotension: A significant drop in blood pressure when rising to a standing position. Anything over a 30% drop merits investigation of further symptoms because this is a typical sign of Multiple System Atrophy. This was my initial diagnosis, but I did not meet the blood pressure statistics and I also promptly responded to a modest dose of levodopa. MSA is usually fatal within 7 years and does not respond well to dopamine if it responds at all. Other signs to look at if it is possible or probable MSA are MRI results showing a flattening of the Pons in the brain and also what is called the 'Hot Cross Buns' sign although this is usually later in the disease. Autonomic dysfunction is also notable in MSA.

·         Autonomic dysfunction: Orthostatic hypotension, oily skin, excessive sweating, urinary problems, sexual dysfunction, constipation, and intestinal obstruction. Pay close attention to these symptoms and make adjustments to your diet and lifestyle to help with them.

There are a host of other problems associated with Parkinson's such as sleep and vision disturbances, cognitive impairment, mood changes, lack of facial movement and arm swing. These are all part of the package so pay close attention to any and all changes that you notice and report them to your Doctor.

The best thing I can impress upon you is to stay active both mentally and physically. It helps tremendously and seems to keep the progression of symptoms from accelerating. I am active for about 16 or 17 hours a day and it helps mentally, emotionally and physically. It is imperative that you do this even if it hurts sometimes. It will add to the quality of your life and perhaps even the length of it.

Diet

Whatever your eating habits are, plan on changing them. Much of the time you will not have a great desire to eat and it will have an adverse effect on you. Pay close attention to what and when you eat. Your sense of taste and smell may also be affected, so eating may not bring the same pleasure that it did before. It is something you must do though.

In the morning is probably the most critical time to eat. It will provide you with much more energy for the day and your body will feel much better. I typically eat grain cereals such as Grape nuts, Cream of Wheat, Oatmeal or granola. I also try to eat a Banana and have a full glass of juice. The days of hash browns, bacon and eggs every morning are no more for me. I eat foods that give me energy, although I do indulge once or twice a week. That's ok, just try not to make a habit of it. Do not worry about cutting out Coffee, it is not going to hurt anything. The caffeine can actually help the distribution of dopamine in your body is what I have found.

Learn to snack on healthy foods throughout the day. I typically snack all day and skip lunch. Nuts are excellent along with granola, fruit, whole grain crackers, dried fruit and the like. These foods will get you through the day without problems. It helps keep your energy up, reduces fat and increases muscle tone.

For dinner I eat whatever I want. There is one distinct exception here; I cook everything from scratch. Of course I do have canned goods such as soups etc. when I need a quick meal which is ok, just do not make a habit of it. I may incorporate a small menu page at some point in the future. If you do not know how to cook healthy, take some time and learn. It will benefit you greatly.

·         Alcohol consumption: If you drink, go ahead as long as it doesn't worsen your symptoms. Just do not over indulge. If it worsens your symptoms you should not do it and probably undergo some simple blood tests to make sure that you do not have any liver or kidney dysfunction or intestinal issues. It could be a sign of other problems that may in fact relate to secondary Parkinsonism. Just a thought. Leave no stone unturned.

I personally have anywhere from a couple of sips to 2 drinks daily. Avoid empty calories from beer and avoid hard liquor. I do find that a couple of glasses of red wine enables me to sleep much more soundly at night leaving me feeling much more rested in the morning. I attribute this to the complex sugars that are produced during the fermentation process.

Pay attention to your body and it is needs. Your diet is probably the most important factor to your health whether you have Parkinson's or not.

Hygiene

Shower daily, brush your teeth thoroughly, keep your hair and nails groomed, wear clean clothes, make your bed in the morning and keep your living space clean. You will feel much better about yourself and that is very important to your well being.

These are just some tips that I have learned to live by. I have been dealing with this for more than 2 years and decided some time ago that I would not let it hold me back. Changes take time, so do not get discouraged. Live each day like it is your first, not your last. Do not give in to impulsiveness or stop caring about yourself or your life. Each day is new and full of challenges. Dealing with those challenges and conquering them can be quite fulfilling. Give it a try and enjoy your life rather than giving in to anxiety or depression. There is so much out there that you can do and so many new things to see and learn. Take full advantage of it and explore your world with vigor. It will make a healthier happier you.