I would love to give credit for this post, but I can’t identify who wrote it. It appeared in this months Northwest Parkinson’s Foundation newsletter.  Enjoy!

My Parkinsons’ Disease Diary

OK, we already know that caffeine is supposedly neuroprotective and has a role in preventing Parkinson’s disease. I’ve been drinking coffee since I was 14. I have Parkinson’s.

We already know that nicotine is supposedly neuroprotective and has a role in preventing Parkinson’s disease. I’ve been a cigar smoker since I was 17. I have Parkinson’s.

Here’s a NEW reason why I can’t possibly have PD.

People who regularly take the over-the-counter painkiller ibuprofen may have a lower risk of getting Parkinson’s disease, a new study says. Researchers from the Harvard School of Public Health studied more than 136,000 people over six years and asked them about their use of aspirin, ibuprofen and acetaminophen, which are all classified as non-steroid anti-inflammatory drugs, or NSAIDs.

During the study, 293 people developed Parkinson’s disease. That’s 0.2 percent of the people. The researchers said in a news release [that people who took] ibuprofen were 40 percent less likely to develop Parkinson’s disease than people who didn’t [take it]. Also, people who took higher amounts of ibuprofen were less likely to develop Parkinson’s disease than people who took smaller amounts of the drug. The results were the same regardless of age, smoking and caffeine intake, they said.

I’ve been a regular taker of ibuprofen since my late 20s when I first developed arthritis in one of my knees. So, if this is all true…

I can’t POSSIBLY have Parkinson’s disease.

So, what the heck is my neurologist talking about?

What’s on my mind of late……

It seems like alot of people I know are in what I call a ‘funk’ right now. And it’s not too surprising. I mean it’s the middle of winter, and here in East TN we’ve had an unusual amount of real cold and snowy weather. A couple of days it was so cold I could not even make myself sprint from the warmth of inside the house, across about 20 feet, to the warmth of the hot tub.

If you haven’t figured it out by now, I love my hot tub. People ask me if it helps with my Parkinson’s symptoms and all I can say is “It really helps while I am in there!” There is only one problem: I can’t stay in it 24/7!

There are lots of other contributing factors to the ’funk’ mode so many of us find ourselves in, such as…

~We may be having health issues or someone we know may be ill. I don’t know another time past when I know so many with seriously ill family members.

~The economy is in a major down-turn. We may have family members unemployed or know more friends having to deal with economic crises.

~As if those two are not enough…then the Tiger Woods thing happened….

~The Colts lost the Super Bowl, and I couldn’t make it to Kentucky to see Sherri while she was there….L .

But don’t give up my friends…just as the seasons cycle, so do there dreary times in our lives. Personally I am starting to feel some better because:

~My daughter’s basketball team won their regional championship and my so very talented and athletic daughter was MVP!

~The sun was out for 2 days in a row recently

~Girl Scout cookies just got here. I love those shortbread cookies and a cup of milk!

~Survivor is one with a new group and this time it is former players of “Heros’ vs. Villans”, plus college basketball NCAA tournament is coming up soon, and the winter Olympics are on TV as well.

And in the PD world, excitement is building for the Unity Walk in April and a fundraising climb with the Regulars up Mt. Washington in late July.

Let us know what is happening in your world that is helping you out of a ’funk’!

I’ve been looking through some old pictures and found this random set. You can view my eclectic group of pix in the slideshow:

http://www.flickr.com/photos/70487584@N00/sets/72157600409561823/show/

And I’d be curious as to what traits you can see of me from them!!

Here’s to leaving funks in the dust!
Judy

I’ve been gone. Gone to Kentucky for a week, to be with my brother through his hip surgery and hopefully I was some help afterward. Three weeks ago, I was in Montana helping my mom with my dad after his back surgery.

A lot has happened in between then and yesterday. For example, I broke my toothbrush. What?! you may ask. Yes, I broke my toothbrush. It was one of those electric kind that run on batteries and my hand was refusing to cooperate and the harder I pushed, the harder I scrubbed, well… it broke.

And, that was the last straw. I broke down. For the (I think) first time since being diagnosed five years ago, I was angry and grieving. Through that melt down, I learned several things (not in any particular order).

1. I am tired.
2. I cannot do what I used to do.
3. I can’t cope with disorganization in my life.
4. I am frustrated that I get distracted so easily.
5. I want my doctor back.
6. I came home seeing improvements in the people I cared for, while nothing inside me got better.
7. I know that things can always be worse.
8. No matter what does or doesn’t happen, it will not catch God by surprise.

I started this blog about four years ago as more of a journal. During my melt down, I realized I miss that. Sometimes I think I have to be strong and not let others see the struggle within me because of this disease. I have tremors that are becoming more noticeable, but it’s what goes on inside of me that makes others say things like, “You sure don’t look like you have Parkinson’s disease.”

Sometimes, don’t you wish you could switch birth suits so others might have a better understanding? Everyone’s perception of certain diseases is different. Many people don’t realize all the different elements that can be prevalent in Parkinson’s. Depression. Loss of smell. Pain. Loss of mobility in doing basic, simple tasks like tying your own shoes. There’s so much more, but I don’t need to go into that.

The thing is – I love to write. It’s harder now than it used to be. I don’t even attempt handwriting anymore unless it’s signing a card or something similar. Even the computer frustrates me, especially when my ‘mobility’ isn’t cooperating and my mind is racing with ideas.

I love to encourage others because of what I’ve gone through. I believe that God always places someone a little further up on the path of life, so that they are able to help us on our journeys. Someone a little more experienced, a little bit wiser. They come alongside us and there’s an instant camaraderie. The circle becomes complete when we do the same thing for others.

So, even though my discouragement (and sometimes despair) kicks in and beckons me to walk toward the side of the road where discouragement dwells, I’ll remember my list…

1. I am tired, but I’m still kicking.
2. I cannot do what I used to do, but I am doing something.
3. I can’t cope with disorganization in my life, so I am working on simplifying things in my life so I don’t get so frustrated.
4. I am frustrated that I get distracted so easily, so I am making a concerted effort to improve my brainpower any way I can. (Anyone have any suggestions?)
5. I want my doctor back, but I’m willing to go where God sends me.
6. I came home seeing improvements in the people I cared for, while nothing inside of me got better… and that’s okay.
7. I know things can always be worse and just might, but…
8. …no matter what does or doesn’t happen, it won’t catch God by surprise.

So, I guess this is to say, I hope to get back to posting more regularly and more personally as I journey day by day with PD. After all, it’s when we allow ourselves to become transparent that we can do the most good for those coming behind us.

Who’s following you?

It was a year ago exactly, that I was surfing the net and came across a group of regular people that caught my attention. I didn’t know anything about them, but I was intrigued when I discovered what they were up to.

They call themselves the Regulars. For those of you not familiar with this group, they are a team of ordinary people, on a quest toward a great purpose. They are determined to bring awareness to Alzheimer’s and Parkinson’s disease in order to find a cure.

The group, founded and led by Enzo Simone, began its quest in 2006. A Trail Called Hope was born out of Enzo’s desire to see Parkinson’s and Alzheimer’s disease conquered by bringing worldwide attention to help in finding a cure. His method? Conquering one mountain at a time for the next ten years and forming an ever-changing entourage of members who climb with him each year.

Several have been invited to climb, but not all are able. If physical limitations don’t present a barrier, then the work it takes to just get to the trailhead itself may hinder a wanna-be Regular. In Enzo’s words, “Becoming one of the Regulars is not a flight of fancy and will require you to work hard in more ways than you can imagine. You will promise yourself and others a number of things by becoming one of the Regulars.”

What exactly are those promises? Enzo calls them the Regulars’ 11 Commandments, making it clear what is expected from each team member. Some of them are:

~You must be willing to fund raise.

~You will be willing to make many sacrifices.

~You must be willing to raise awareness.

~You must be willing to pay your own way for all expenses.

~You must be willing to share your experiences with others.

~You must be willing to promote the need for not one, but BOTH Alzheimer’s and Parkinson’s to benefit the Alzheimer’s Association AND Michael J. Fox Foundation – Team Fox.

~Although the following is not a requirement, it is usually best if Alzheimer’s has impacted your family (or Parkinson’s) so that you have seen the devastation first hand and can tell others through your own experiences with these diseases.

Raising awareness and funds for Parkinson’s and Alzheimer’s disease is not just an agenda for Enzo. It is also a personal quest. He sees the devastation it has caused in members of his family. He knows of and has lived within its consequences with loved ones – first hand. However, because of the trail he has chosen to walk, he has seen and/or met hundreds, if not thousands of others who have been affected by these diseases. He knows their struggles, their dreams, and often many times, their hopelessness. However, Enzo’s motto: In the quest to conquer Alzheimer’s and Parkinson’s disease, we were born to end this! In living his motto, he in turn has revived hope in the people who are afflicted with these diseases.

In his latest climb, he and his team conquered Mt. Kilimanjaro in July of this past year. The climb was filmed and sections of can it be seen in the upcoming documentary, 10 Mountains 10 Years, which is being produced by Back Light Productions. The movie’s introduction is done by Leeza Gibbons, narrated by Anne Hathaway and Bruce Springsteen has contributed his time and talent to the project as well. The film festival locations and dates, however, have not yet been released. This is currently the Regulars’ largest awareness project/fundraiser they’ve currently got in the works.

Their next climb? What originally was to be Aconcagua in Mexico, the Regulars have taken a side trail and substituted “The Army of Change” Mount Washington project in New Hampshire to their list of mountains to conquer.  This ‘little jaunt’ was added for the benefit of those who are fighting for a cure for Alzheimer’s and Parkinson’s disease and are unable (for whatever reason) to conquer an Everest or a Mt. Hood but want to participate in some sort of climb. Because of the magnitude of interest the Regulars are stirring, they hope to get at least a thousand advocates climbing Mt. Washington together this summer. (If you would like to be a part of the Mt. Washington climb taking place on July 31, contact Enzo Simone at the Regular’s website 10mountains10years.)

As I said, it has been almost a year since I first heard about the Regulars. Within that year, they have raised thousands of dollars to find a cure for Alzheimer’s and Parkinson’s disease. Within a year, they have climbed a minimum of 19, 341 feet – the height of Mt. Kilimanjaro. Within a year, they have brought considerable attention to their cause – a quest to end these two diseases. Within a year, they have given hope back to those afflicted by two debilitating diseases and enabled them to dream once again because of the attention this team of regular people are bring to these diseases.

If you’d like more information, you can visit their website above or find them on their Facebook page, 10 Mountains, 10 Years. Perhaps within a year, we’ll have witnessed history and seen a cure finally found for Parkinson’s and/or Alzheimer’s disease. Now, wouldn’t that be a mountain top experience!

I received (as well as some others of you) a message from Scott McDonald today. Scott is a staff member of the Parkinson’s Action Network (PAN). With the message was attached the following link, which takes you to a video that “provides greater detail about this year’s [PAN] Forum. ” This will be “a live, online broadcast on February 17, 2010 from 11 am to 5 pm EST”, giving “greater insight into the Forum experience. ”

Thanks for PAN for the video and all the work they do for supporting those with PD/YOPD and helping in our quest to find a cure.

Watch the video and then make sure you register for the event at the link provided below.

Register here:  PAN Forum

Are you tired of the cold northwest dumping more than snow on you? Awaiting you is a warmer yet wet little area of the northwest not commonly mentioned.While browsing the internet two days ago, I came across a phenomenal breakthrough in opportunities to fit your specialty.

The Best Job in the World

By clicking on the above link, you will be connected directly to the site where awaiting you is an opening needing the greatest neurologist in the world who also specializes in movement disorders, among other specialties.

Let’s take a quick look at the magnitude of this opportunity, as stated in the job description:

Premier southwest Oregon private practice is currently scheduling interviews for a board-certified / board-eligible Neurologist.

You will have the opportunity to sub-specialize in the following areas (fellowship training preferred): Cerebrovascular Disease/Stroke, EEG/EMG, Epilepsy, Movement Disorders, Multiple Sclerosis, Neurophysiology, Sleep Disorders, Pain or Pediatrics.

-Enjoy a competitive starting salary, comprehensive benefits, pension plan, and partnership track when you join this dynamic clinic (Please note they said ‘dynamic’ – I didn’t have to entice you with big words)
-Be busy from day one (I will be your first patient to guarantee this benefit!)
-Large catchment area of over 600,000 offering a solid patient base (I can also guarantee a solid patient base as Parkinson’s Journey has several of your past patients patiently waiting to hear that you’re not too far away from landing nearby, and ready, if need be, to welcome you at the newly renovated Rogue Valley International Airport, with two baggage turnstiles and all on one convenient level!)
-Well-established physician referral network (I’m not sure how I can guarantee this one.)
-Collegial practice environment (I can guarantee this, as the university is so close and think of all the young minds you could mentor.)
-Terrific work-life balance (I can guarantee this by stating that your drive to work will not be anywhere near what you had to drive to get to Spokane / Liberty Lake – unless of course you find a home that far out again!)

The Medford Neurological & Spine Clinic has a 44-year history of offering comprehensive neurological services. As the only full-service clinic in the surrounding area, our clinic staffs both neurologists and neurosurgeons and specializes in adult and pediatric neurology, electro-diagnostic studies, stealth frameless CT- / MRI-guided cranial surgery, skull base surgery, microsurgical spinal surgery, transphenoidal adenomectomy and stereotactic radiosurgery consultations. (Isn’t that just so exciting?!!!)

Would you consider joining our team? Apply today! (Please!!!)

If the above weren’t enough to entice you, get your wife and read on (I will highlight the strong points for you):

Medford, Oregon is surrounded by beautiful mountains and offers moderate temperatures year-round. (Consider the lack of snow shoveling you’ll have to do!) You will appreciate our outdoor recreation, such as golf, mountain biking, fishing, boating and skiing, as well as enjoy our first-class day spas, outdoor concerts, award-winning theatre performances, and monthly festivals. Medford, Oregon offers affordable luxury homes, excellent public and private schools, and LOW PROPERTY TAXES; plus there is NO SALES TAX in the state of Oregon! And, for those who enjoy the beach, the Pacific coast is a short 2.5 hour drive from Medford. Come home to Medford! Apply today!

And now, if that still hasn’t convinced you, consider these pros (cons are of no concern here):

~ Gardening in Medford cannot be compared to anywhere else on earth. Prize winning pumpkins, world famous pears and more await the avid gardener and his/her spouse.

~ Cultural activities are as diverse as the world famous Ashland Shakespeare Festival or the Jackson County Draft Horse Pull.

~ Guided tours of Harry and David, where free samples of raspberry shortbread cookies are handed out when the tour ends.

~ Holiday events galore to welcome the Christmas season and more – Gingerbread House Festival, Ashland Christmas Parade with the spikey head snowmen and fun beyond belief.

~ Farmer’s Market through the summer months with fresh fruits and veggies. Dogs have been banned which takes away the fear of being devoured while shopping.

~ Discounts at the supermarket Friday mornings on old breads and meats.

~ Nearby and historical Jacksonville offers a peaceful atmosphere and the Britt Festival with world famous musical artists such as James Taylor.

Now, some may think I’m being selfish and that I just want my doctor back (which I cannot deny as being true and don’t relish the thought of anyone else messing with my brain), but really I’m just worried about you not having the opportunity to touch other’s lives with your calling. At the very least, with all attempts of humor set aside, I hope you know just how much you are missed.

Sherri

I met Elliott Fike through Facebook. Elliott has Young Onset Parkinson’s disease.

Welcome to Parkinson’s Journey, Elliott. You were a firefighter, is that correct?

Yes, I was a Firefighter/Paramedic for the Bazetta Township Fire Department, located in northeast Ohio, in Trumbull County.

Was it a childhood dream to become a firefighter or if not, was it a ‘grown up’ decision?

This was not a childhood dream, but what lead me to firefighting was that I was talked to by a member of the department who asked me to join and give it a try. I began in 1981 as a junior volunteer and have been in the business since for 28 years.

What did you enjoy most about it?

The enjoyment initially was the rush that you would get on a fire or EMS call. Now, it’s knowing that you did make a difference in the life of an individual.

When did you first notice ‘something’ was wrong? What were your symptoms?

Several years ago, I had a lot of people, constantly asking why I looked angry and had no expression on my face. I could not answer, other than to say I was not angry.

I noticed a small tremor in my finger, and I also noticed I would become easily fatigued. I was an avid weightlifter/strongman. I would work out with weights and thought that it was due to me getting older and my body was not taking it like a younger body would.

I would change workouts, take time off, but none of this would really help. I was unable to do a lot of the outside work at the pace I was use to. I just took assumed again that it was due to growing older and perhaps some stress.

About two years ago, my muscles would twitch and there were involuntary movements with my body. Tremors haven’t really been the problem as they have been minor. After I would workout at the gym or do any work, I would be unable to move, have severe body–wide pain and severe stiffness body wide. My hands and feet would cramp. I was beginning to think I had perhaps overworked the muscles and this was the problem. It came to a point where my wife noticed I was shuffling my feet more, and would tell me to pick up my feet. I could not – it was like I just could not pick them up. Stairs were harder, I was known as the person who would fall going up stairs. This was due to the dragging of my right leg catching on the lip of the step, causing me to fall forward.

I am learning how to do certain tasks a different way, and I have help from my son.

How old is your son and how has he helped you?

My son is 19 years old. He does some work around here that he knows may be dangerous.

How did your wife respond to your diagnosis?

She experienced her father having Parkinson’s disease, and he passed away in June 2008. She knows the frustration, especially when doctors do not want to come out and say that you have Parkinson’s, but some sort of mental illness.

What did you do when you found out you had Young Onset PD? What was your response and what action did you take?

We did some research, and the symptoms matched a variety of neuro disorders, but what stood out on some was Parkinson’s. I have been referred to doctor after doctor who would range in diagnoses from telling me that I am fat and depressed and need sleep, to I was putting on a dog and pony show.

My present doctor believes 70 percent of what’s wrong is Parkinson’s, but still believes there may be another factor here due to other symptoms that I have. She did place me on medication with improvement in symptoms, but still has not given her 93 percent diagnosis at this time. She stated the only way I would get 100 percent is by dying and having an autopsy.

She really said that? Was she kidding? I’m not questioning you – I’ve just never heard of that.

No. She is not kidding. In fact, now she has reneged her diagnosis, stating that she never gave it, when in fact, she told me to my face she was at the 70 percent. But this statement is not a joke. She will not give any higher diagnosis than a 93 percent, which has now put me on the list to have an autopsy.

I have accepted the fact of having a movement disorder.

How do your family and friends cope with your PD?

Well, family does well, as far as friends, I cannot answer that. I have not been contacted by anyone, or asked by any friends how it is going.

Elliott, what (if any) are your greatest fears?

The biggest fear I have is reaching the final stage and needing someone to constantly take care of me.

I think that’s one of mine, too. I suppose it’s not so much a fear as much as a feeling of becoming a burden to someone.

Do you take part in support groups? Would you recommend support groups for people with PD?

No, I do not belong to support groups, though I do see a psychologist who feels that I have handled my PD well and would be more of an asset to those with the disease due to my caring ways and the talent to be a motivational speaker. I would recommend support to those who do have a problem of coping with this disease.

What sort of things have you spoken on in regards to PD and where have you spoken (lately)?

I have not spoken yet due to the doctor not giving me the diagnosis completely. I cannot understand why with the symptoms and signs, and on one hand telling me yes, and then stating in a report that she has not given the diagnosis.

What is the greatest obstacle you’ve had to overcome?

Currently, I am filing for disability. With this disease, along with the side effects of the medication, I cannot be a fireman any more. The greatest obstacle is doctors who have the attitude that people my age cannot have Parkinson’s and try pushing it off as another problem. Even when the medication for Parkinson’s works, they still do not believe the problem is Parkinson’s.

I know I am not alone in the crowd. I have read a lot of stories of other patients. It is sad, and I now know why depression is a big factor. Being told you need sleep or are faking, when you know something is wrong, can make you crazy. And – I am still fighting this. Even with a Parkinson’s doctor. We know our bodies – they don’t.

I think many of us can agree with you in regards to feeling crazy when no one believes you have something wrong (because they can’t see it). It is frustrating.

You mentioned depression. Do you find you struggle with that (or did) and how do you cope with that, other than more medications?

The depression is not from the problems of the illness, but from the hassle I have been through from the medical profession. When your own primary doctor believes it is anxiety disorder, and my psychologist who has been treating me for a year and a half, states that there is no anxiety disorder, you have to wonder what to believe. I tremor, get stiff, shuffle, cannot write well, pain. I think part of the depression is when someone important shows a sign, they have it, but the general population shows the signs and symptoms, they are automatically diagnosed with a mental disorder.

What is the greatest thing you have learned from having PD?

Believe it or not, those doctors should receive more training in recognizing this disorder in younger people. I have learned to do different tasks in a different way to complete them. I will not let this disorder own me, but I will own it.

Do you have any hobbies and if so, what are they?

I have a wood shop. I build numerous projects from small to large. I also refinish pieces of furniture or wood work. We do have one rule of the shop, when the wife is not home, I cannot play with the power tools.

If you could leave our audience with a word of wisdom and/or encouragement, what would it be?

Do not give up. Refuse to be told that it is all in your head if you are still in the process of a diagnosis. We know our bodies better than anyone. Do not let this disease own you, own it. As much pain, stiffness, and tremors I have, I make sure everyday I do something and not sit. The mind is very powerful. I did not ask God why me, I ask God, what is it you want me to do. Become an inspiration, there are some people who will have difficulty in dealing with the diagnosis, but life is not over. I will talk to anyone who is having this difficulty. Two years and numerous doctors, was actually made to take a psych evaluation. But throw all you want, I will not falter.

Anything more you’d like to add?

This has been a painful road for me. To have doctors tell me that it is all mental. I read through my primary doctors notes from the last year and on everyone, he wrote, Anxiety disorder. He refuses to assist me in any way with this. A doctor in Cleveland Clinic, a movement disorder doctor, also stated an organic brain disorder, but believes this is a mental disorder. A local doctor actually said to me, that I was fat and depressed and needed sleep. It is time, that neurologist, movement disorder doctors receive more training in the recognizing Parkinson’s in the young. It is demoralizing, degrading, and embarrassing to be told this over and over.

Thank you so much Elliott, for sharing with us. I am awed at your perseverance and insistence. You are a fighter and I know there are many at PJ who believe in the power of prayer and will be praying that God brings the right physician your way that fully understands what you’re dealing with and can help with determination to give you the best care and compassion. Those kind of doctors, though sometimes hard to find, really do exist.

And for all of those at PJ and/or who struggle with the issues of having a chronic disease, there are other issues such as healthcare that Elliott is fighting. Please pray for relief for him and his family. If you have a story that you’d like to share to encourage someone else, please let us know! Next interviewee: Kris Kessling – Painter, Poetry writer and Parkinson’s fighter!

~Sherri

You read articles about what to get the woman in your life, the man in your life, the dog in your life, but when have you read an article about what to give a person with Parkinson’s for Christmas? Here are a few suggestions to cover that innocently forgotten dilemma.

People with Parkinson’s (otherwise abbreviated as PWP) often notice slight tremors first. Now, when these become more prominent, they can be useful, especially in today’s recession. Save the blender and stir that milkshake with the side that has the most dominate tremor. Stir, stir, stir until it’s the right consistency. With the money you save on electricity, you can go out and splurge on the gum Bob recommends on the show, The Biggest Loser, so you won’t want to make milkshakes anymore (yeah, right). He says if you chew that gum (sugar free something or another) long enough, the craving for sweets will be diverted. I don’t believe him and often must reach for another Oreo to cover my bases.

A great gift is a walking stick or often known as – a cane. These are useful to maintain balance and also to give your spouse a little nudge to remind them to behave in questionable moments. Walkers are great as they allow a PWP to sit and rest a while when they get tired. There is one flaw: if you have recently taken your Sinemet or Mirapex, make sure you have someone spotting you for when you are about to fall asleep and eventually fall over. A wheelchair is more stable. The electric ones are great fun for having races. Oh – and make sure you have pants and underwear on. You laugh – my son’s neighbor had a problem remembering to get fully clothed before taking off in her electric mobile. Very awkward.

Have you thought of the difficulty that PWP have tying shoe laces? They do have special velcro thing-a-ma-bobs to help pull up your socks. You purchase slip ons instead for a PWP as shoes that tie are impossible. And I say let’s get some of those Velcro thing-a-ma-bobs for pants. I’m still working on something to help take a coat or sweatshirt off without getting my arm stuck in back of me. Very frustrating…

A neck wrap that you can heat up would be appreciated when your neck gets so stiff. Or a neck rub. Or a back rub. Or a massage. Or all three. We’re not picky. You could even make this neck wrap, using a nice piece of flannel, terry cloth – you pick. Caution: If you use corn kernels, bake it first so it won’t pop inside the wrap the first time you go to use it. Not good.

Consider a microphone for their computer. They can use Skype. They can talk their words instead of typing them. This is super dandy when their fingers don’t want to do what their brain keeps telling them to do.

A ‘Bullet’ or version thereof, that chops, purees, etc., is a great gift. It can puree anything into baby food consistency. Isn’t that lovely? By the way – it’s great for those milkshakes previously mentioned.

Perfume or cologne. Not because we smell bad, but because we can’t smell. It’s sort of a precautionary measure. Especially on a warm, sultry day. Emit fragrances that are pleasing and the sweat may be overlooked.

Take them to get a stamp made of their autograph so that on days their fingers are not cooperating and being submissive to the desire of their mind, they can just stamp their signature. Cool.

Books that make them laugh. Calvin and Hobbs, Jane Austen… forget that – get them a Veggie Tales movie that has singing in it. They can sing to the little peas jumping across the screen to show when to sing. Quite a useful little tool. They’ll be humming veggie songs all day. ‘Broccoli, celery, gotta be, Veggie Tales!” Singing is good for the soul and good for the vocal cords in PWP.

The key to a perfect gift is listening and watching for what they struggle with. That’s a good start in determining what will make your PWP smile or their life a little easier. Do you have any suggestions to pass on? Please do!

There have been many stories coming my way lately, regarding the made up scenarios of Parkinson’s disease. What I mean is this – some are being told by their spouses or other caregivers that their faking it or it’s all in their head (no pun intended). Some are going to the doctor, only to have the doctor (not a specialist in PD) tell them – the patient – that they’re just going through a phase of depression and eventually, they’ll get over it.

Let me tell you a tidbit of my story… At the age of 30 or so, I started having some things go wrong – healthwise. I was getting extremely tired. My eye began being weird. I suppose you could say that was the symptom that got me to the doctor. The eye doctor.

Before my eye exam, I explained what was going on. My eye would burn terribly and hurt and then I was seeing these little ‘fireball’ type objects. I likened them to the fireballs in the Mario Brothers Nintendo games. During an eye exam, my eye doctor slid over to the light switch on his little black stool and flipped the lights on. Something he had never done before.

“Has anyone in your family ever had MS?”

My heart sank. “No.”

At that response, he went down the hall and brought the ophthalmologist back with him. Off went the lights and the ophthalmologist examined my eye (the other doctor was an optometrist. The lights came back on again.

“Your optic nerve is hemorrhaging. What your’re seeing and is making your eye burn is blood.”

According to the two doctors standing there, Multiple Sclerosis, Rheumatoid Arthritis, and Lupus can often begin with what was happening inside my eye. However, there was one other thing it could have possibly been and they immediately had me come back in the morning to have an MRI of my brain done, to make sure it wasn’t a brain tumor pushing on my optic nerve. An MRI would also show if there was any build up of myelin on my brain – another symptom of MS. The MRI came back negative for a brain tumor but showed some slight myelin build up – a symptom of MS if the build had been greater.

Eventually, they called it Lupus and treated me accordingly for it. Ten years later, I was diagnosed with Young Onset Parkinson’s disease. The symptoms have been consistent with all I’ve read about PD. I think they got it right this time around.

The point of me telling you ‘my’ story, is to show you that often times, certain diseases may ravage our bodies and never be seen with the naked eye. No one else could see my eye hemorrhaging and what was causing the awful burning I could feel (and see!). But it was real.

And now I have PD, as do so many others who thought they were signing up for one thing, only to find out they were given another. A life of leisure gone wrong.

What does PD look like? That all depends. First of all, it is different for everyone who has it. Some may shake uncontrollably – all the time – while others shake less but have terrible back and/or shoulder pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their disappearing voice, while others take speech lessons (or talk to themselves).

Some have a difficult time with speech, walking, etc. However, most people don’t and most likely won’t ‘see’ this.

You won’t see the restless legs that keep them awake half the night, pacing the floor to get it to stop. You may miss seeing when your PD person falls and scratches up their forearms and elbows.

You won’t see them struggle while getting dressed because they want to try to do it themselves just one more time. You won’t see how it becomes harder and harder to swallow their medications.

The fact is, you won’t see a lot symptoms common for PD or MS or Lupus, etc.k, even if they are visible, because you may not really understand the disease or know what to look for. But, the PD patient is fully aware of what is going on inside of them and no one believes them because they can’t see it and think they’re faking that they have the disease because they badly want attention..

May I ask a favor? Don’t dispute what they are trying to tell you or are dealing with. To lose the support of a spouse who thinks you’re merely putting on an act can be devastating to the one suffering. If you’re in denial over what your spouse has been diagnosed with, seek out a support group for caregivers.

Whatever you do, don’t push their diagnosis away and pretend nothing’s wrong. Believe them or they’ll seek support somewhere else. Is that really what you want?

And PD person, if you’ve got a doctor that doesn’t believe what you’re telling him, get a new doctor.

The following comment was received a bit ago. I am publishing this as a post as the information is valuable. Thanks Tina!

Here is a site to recommend to people who need lots of help with daily things. It’s called Lots of Helping Hands. If the person needing the help can’t be the cordinator then someone else can do it. As you will see it’s an online calendar and you enter each of the activities you need help with, dinners, cleaning, errands, babysitting, ect. Then you email everyone that keeps asking, or not asking, how they can help and they sign in to your calendar.  Choose the task they want to help with the rest of the work is done by the program. I’ve had a calendar for the last 6 or so months and it’s been a true blessing.

I know it’s hard for some to receive help even if it’s a little and especially if it’s a lot. One of my many lessons that the Lord has taught me on this pilgramage is that it’s not always about me. So many times people that have come to help have expressed how blessed they feel to be able to help out in some way.

God’s ways are not our ways for sure but His way is always the best.

lotsofhelpinghands.com

Tina Lagonegro

THANKS, TINA!