[Tina]

Toni

Please don’t feel too bad about getting upset and losing it when having dealings with others. We all get it with PD and there’s a lot of people without PD that get upset.

I talked with my neuro about it and she said there’s a lot of things going on in the brain, and it’s trying to process it all without having all the chemicals it needs. She said to sit down and try to reduce the amount of things I’m thinking about and it will help me to stay calm.

I laughed and told her I have multiple master degrees in finance and auditing and used to solve problems  simultaneously while doing a number of other things. Now I can’t talk to anyone about any concern or even pay bills or balance my checkbook on autopay without shaking. It makes me have to refocus myself on something easy so I can calm down. “It is what it is” has become one of my new sayings. I’m very glad I only shake when I’m upset on meds and not all the time.

My regular doctor said he wondered why my neuro has me only on an agonist and not levodopa. I’m glad though because I’ve read that it wears off and the shaking on the down times is significant. I’m not there yet and can’t predict the future so I’m taking it one rx dosage at a time to see how long it controls the shaking. I feel as long as I can stretch out the effectiveness of a current med by trying to maintain control over my environment and moods, that’s the best I can do.

I’m a lot slower solving issues but I’m doing what I can when I can. And at my age I figure I’ve earned my spot on this earth and others are going to have to respect that or I just can’t deal with them on their terms. I know I can’t solve every issue without getting upset, but when I perceive I’m not getting anywhere with someone and I’ve done my best to be nice, I just end the conversation and try another time. It’s the best I can do!

[Tina]

My PD gait has definitely exacerbated my foot problems which affect my spine and neck problems, and consequently my muscles and ligaments in a negative way. So hello fibromyalgia, it’s been a long while since we’ve spent time together. Ugghh. And now my rigor whatever my podiatrist says I have in my left large toe joint is now becoming so stiff and arthritic it’s getting harder to walk. Now I know why I love my Birkenstock style negative footbed shoes. They really help with the alignment of the foot and therefore everything else.

[Tina]

I had given up sugar and chocolate finally after a whole lifetime of battling those cravings. I suffered from terrible migraines and also used coffee, chocolate and meds to control them. When I went on seizure medicine my migraines came under control and my cravings disappeared to the point of never wanting those snacks ever. Even iced tea and ice cream cravings disappeared when I was put on a dopamine agonist.

Then I went on meals on wheels where they give you little snacks, including chocolate snacks and guess what—I’m now craving chocolate every night after dinner, so I had to buy a bag of chocolates so I could eat 1 or 2 to satisfy. Only now it’s 6-7. And I’ve added cookies too.

I guess it’s also what you feed your brain that develops cravings, so I’m going to try to back down on the chocolate and cookies. I have been successful in switching to decaf coffee as my neuro says no coffee. And I don’t crave tea or ice cream.  Anyone who knows me knows that’s part of my very being, and it’s strange that I gave those up after a lifelong history.

So the only thing I can say is it’s PD, the meds, or both, since my food cravings only changed when I was diagnosed and put on meds. And I think it’s the meds since I’ve had PD symptoms starting 20 years ago, which only worsened about 6 years ago, for which I’ve been diagnosed about 1 year.

My neuro always says it’s not the meds when I ask her anything about PD, but since the symptoms abate when I take them, I just follow her advice. I do have other medical conditions too, for which I take meds, so it’s kind of a tradeoff of what causes what. That’s why I just choose to focus on the things in my life I can control, to keep happy. I just hope I can get under control the number of items I put in my mouth or fear it may be a slippery slope towards the sugar and chocolate trap.

[Tina]

Well I just went to my neuro appt today and of course I forgot to ask her what I really wanted to—why I’m so talkative, especially since I have declining breathing, swallowing and vocal control. Oh well.

What we did discuss was my increased memory issues, apathy and anxiety at the thought of doing financial tasks, despite having several graduate degrees in the field.

I asked her about exposure to toxins as I had been reading about it and PD. I described my exposure to toxins in my childhood and she said it had a part in my disease development. I had always wondered about us kids running behind the ddt mosquito trucks, painting “polka dots” on for fun with the orange mercurochrome dropper etc, and all the other dumb things we did growing up without tv and playing outside.

I also had a mouthful of fillings, almost every known childhood disease including scarlet fever, and was always undergoing some new “treatment” along with some horrible fluid to dissolve the multiple coins I was always swallowing for some reason. Hard to believe I tested at genius level considering my terrible health and the poor diet I was raised on in a poor family.

Anyway she said exposure to toxins is considered causal for PD, and also the history of various autoimmune diseases in me and my family for myasthenia gravis along with the antibodies. She said I probably always had MG since my family doctor thought I had either epilepsy or polio, always having seizures and falling down. Makes sense to me for both diseases.

I was hoping the MG could go into remission since it’s autoimmune but she said not at my age and this level of progression. I tried to convince her again that maybe I just had MG instead of PD, but she said no. Different symptoms, different tremors. Double whammy.

So as I’ve said here before, time to hit it out of the park on the bucket list. Right after my dr appt I went and bought the backing material for the baby quilt I’m going to make for my first grandchild. I started my annual shredding of files after preparing for tax season.

I ordered a new winter coat and gloves for my impending relocation further north. I’m moving into my new “mother in law” apt in my daughter’s new house. She’s going to handle my cooking and  finances.

I’m still trading a few stocks, for how long I don’t know, but I’ve definitely decreased the amount I trade, and consider it hobby money now. That and sewing are about the only things left I have. I can’t sing anymore, reading drives me nuts and I can’t tolerate keeping up with finance news anymore, as it gives me a headache and makes me anxious. So I decided I’ll just focus on a few stocks I know well.

I sang my whole life, read the encyclopedia and Bible three times before age 6, so it’s hard for me to accept all this. But I know I have to stay positive and seek to enjoy smaller things. As long as I can stay grateful and try to encourage and listen to others, I’m affording dignity to myself and others.

Again, I’m sorry for running on, I guess it’s from the pent up emotions this time from feeling like I lost the argument at the neuro appt. At least I have my diagnoses, which I had been seeking for 20 plus years, so that’s a win in that area.

[Tina]

Thanks Jo and Jean. In my “previous life” before PD I was not usually talkative so I’m not sure if it’s the condition or the meds but I think I need to put a lid on it somehow. I’m going to discuss this new “talent” with my neuro this month. I’m sure she’s got a pill for it lol

[Tina]

Charles, this all sounds so familiar, especially the impact on my musical life and physical control. The part about moving the foot in circles astonished me that this is related to PD. For me it was my left arm. I thought I had a stroke because I could not figure out how to move it in the direction I wanted.

Having been an athlete in many different sports, I just couldn’t understand how it could of happened, which started about 2 years after an auto accident and a lupus flare. It was also the same time I lost the volume in my voice, which I attributed to being pushed against the steering wheel. The accident happened when I had a seizure and lost consciousness while driving.

I spent more than 5 years retraining that arm myself with no specific diagnosis or physical therapy, but I did accomplish it to a useful point. To this day though I have to apply thought to that arm before I use it as the tremors are worse there, especially when I’m anxious or meds are wearing off. I can’t trust that arm to hold objects at any time by itself.

My volume has decreased over the years, and my pitch has been limited this year. Hoarseness has been developing since the accident. Since a few months ago I have been humming or singing just a few words or phrases of a verse, but it’s painful. My neurologist says this is really from the MG as I have trouble swallowing as well. She tested for the antibodies which came up positive, so I’m on meds for that, but it hasn’t helped the voice so far.

Your other point about the bucket list hits home with me. Since I’ve worked through the initial 5 stages of grief for my former life, I have a renewed appreciation for my life now and what I’m able to presently do, so I’m quickly taking advantage of it.

I think this condition makes for a heightened awareness of existence, at least of the steps. Looking back I can see it’s been a 20 year journey, of which I didn’t realize where I was really going.  There is comfort in knowing that others can relate; it brings some solace in being able to put a label on some unanswered questions.

Now that everyone around me, including strangers, can see I have difficulty with things, has become more of a stress reliever for me. I’ve hidden my difficulties from everyone over the last 20 years, even myself sometimes, I think, for many reasons, including my career.

Accepting assistance and allowing myself the freedom of just existing sometimes, living in the present and being thankful for what I have to enjoy, is my new reality. I’ve always been a very religious person as well, and relied on prayer and meditation with God to help me deal with my issues privately. Especially in the beginning when doctors weren’t so supportive without more definitive answers, but on a more timely basis now.

This is a condition that calls for reflection, acceptance, and action. It’s preparatory and impetus for living life to the fullest, which is really a good recipe for everyone. I know we’ll all enjoy life here and be supportive as we find answers to our questions others have found.

[Tina]

Jo S.  I agree about the lack of interest in hobbies. I was always exploring new activities. I finally had to admit this year that I had stopped engaging and recently set goals. I learned to sew at age 5 and had businesses. My eyes and back made it difficult to sit in front of my machine so I gave it up and sold everything.

I decided recently to buy a new machine for myself as I always said I was going to do for my retired life. Even though I’ve had it two weeks and haven’t read the manual or threaded it yet, I did set it on my table and bought material to make a baby quilt for my first grandchild. I’ve made them for lots of kids and I thought it would be a terrible waste of talent if I didn’t make her one. So my next goal is to make a very simple one before she’s born at the end of April.

I don’t know if I can really make myself do it, but my daughter had made quilts with me since she was little and I was thinking maybe she would help me.

I’m ashamed of myself for my declining motivation and yet glad I’ve taken the steps I have to get started. Since I couldn’t make my way through the airport by myself yesterday, I know I should be proud of myself for not giving up entirely.

These conditions I have are not friendly to me, but I’m trying to stand my personal ground to the greatest degree for as long as I can. I refuse to stay sad for any unreasonable amount of time. I’ve always been a positive minded person and plan to stay  so.  I just turned 62 yesterday and am very happy I made it to that age cognitively alert, as that’s been a long term goal for the last 20 years.

I’m also glad I found this forum at the recommendation of my RN home visit, since I get out about twice a month now and it’s a long time between the monthly local PD group. I don’t like sharing the level of what I’m going through with my friends, neighbors, family etc yet. So I’m really grateful for this forum and hope my wordiness doesn’t drive other PD people nuts. I’ll keep you posted on the quilt progress if that’s ok.

Since this page is supposed to be about voice and I found that website for the singing practice, that’s going to be a new hobby for me too. I can’t remember things unless they are right in front of me, so having this forum to visit regularly will remind me of these hobby goals. Thanks!

[Tina]

Thanks Jo. And I’ve never been a person in favor of meds but I can say they have truly helped with controlling some symptoms of both. My internal med/geriatric MD said it was remarkable I was on so few meds to see such good results so quickly. I trust my neurologist figured it out based on my symptoms and the antibody test for MG. I’m looking forward on getting second opinions from another neurologist when I move to another state in a few months. I’m also looking forward to moving in with my daughter also. It’ll be less stress in some areas but more in others, so I know it’ll be a period of adjustment which will probably increase some symptoms like tremors and confusion. Just got to stay positive. Some of it is just getting old!

[Tina]

I have these symptoms as well. Being a singer all my life, I was dismayed to say the least, when I noticed quite suddenly that I had lost my singing voice. After reading Jo’s post, I sense that my loss of some control of my voice is due to the meds, either the dopamine agonist, but more likely the pyromidide or however it’s spelled, since I noticed it shortly after I started taking that med.

However, I had noticed the developing of the hoarseness of my speaking voice for several years before I was technically diagnosed with PD. I had noticed a loss of wind and control of my diaphragm for 20 years before he diagnosis.

I have also been recently diagnosed with Myasthenia Gravis as well, which my neurologist says is responsible for my reduced  control of breathing, speaking, singing, swallowing and essential tremors.

I’m not happy with this second diagnosis for sure, which she says is more of a daily threat to my breathing, but I take it one day at a time, and sometimes hourly. It’s autoimmune she says, so I feel I have some control over it, and could possibly go into remission at some point, as I did with lupus previously. Chin up!

 

[Tina]

Garrett, that’s been my experience also. Being someone who’s always managed five things at once, I’m down to half of one before getting “the shakes” as I call them. All I have to do is think of something and I become unable to do it.

Hence, paying bills has become unmanageable. As a degreed financial expert with a storied career, it’s incomprehensible to me that I can still sometimes run numbers in my head concerning stocks yet can’t figure out my checkbook.

Oh well. Just another thing I’ll be “delegating” to my kids…and the fun continues. I’m looking at this as my well earned early retirement. I only have to do the things that make me happy lol

[Tina]

Marlene I like what you said about looking at the negative is scary so don’t do it. I had a friend call me and after listening to my latest negative medical finding, said “ok and what is your recent positive?” I was instantly reset to my usual positive mindset, for which I was grateful.

So I’m going to add this to my mental phrases I use on myself, like “this too shall pass”, “it’ll be ok”, “you’re doing good”, “that was funny”, “that was a close one”, and my go to “stay calm”. I plan on typing a list of them and framing them to hang in each room.

You know how people say they can’t remember why they came into a room? Mine is “it’s ok to leave. You’ll figure it out next time!” so I guess I’ll add that to the list too

[Tina]

MJF has an implant I believe and also underwent deep brain stimulation before that. He’s so involved in finding a cure with having set up his foundation and actively operating it with getting funding, research etc. I’m sure it must affect his outlook on a daily basis as well as long term in a positive and realistic manner.

He’s also had early onset PD and has been dealing with it for many years longer than a substantial amount of PD patients just learning to understand and cope with their particular version of PD like me.

In my particular case I’ve found that acceptance of my new level of “thriving” follows the initial shock, denial, anger and sadness at each new door being opened on my PD journey.

I’ve had a very fulfilling professional life before my PD diagnosis, and continue to do what I can to entertain interest in my former field. However, some days I have to take a day or two off just to allow my mind to rest, and it usually doesn’t take 5 days to reach that need.

I’ve learned that my worse symptom days occur or follow some new stressor that I’ve encountered or tried to overcome or accept.

It’s definitely a challenge dealing with this disease and deciding how and when to share the next onset of symptoms with loved ones and others.

Confidence in myself however, gives me ultimate control in  how I choose to react to things after I allow myself to get over the next “shock of the new”.

I hope for the best for others dealing with this terrible set of symptoms. I encourage them to set appropriate short term goals and adjust their path on a weekly, daily and hourly basis to “keep the peace” in their body, mind and heart.  This goes a long way in helping to deal with disease symptoms as best as can be done along with medication, sleep, diet as well as healthy habits and hobbies.

It’s not easy to deal with PD for anyone, but nothing I’ve ever done has been easy, so I look at it as my personal success story that may somehow encourage others.

I do have to additionally give credit to meditation and prayer as the mainstay in keeping my balance in offsetting the challenges of PD and other medical conditions I’ve been dealing with for many years.  Enjoying nature and laughing with others rounds out my daily plan for coping with PD.

I don’t know how long I’ll be fighting this battle as I have other conditions far worse on a daily basis. But I’m grateful for each day and consider it an inestimable gift to spend more time with my kids and know that I’m teaching them important life lessons of how to deal with adversity with dignity, grace and endurance.

Such traits can be hard to develop in this world of instant gratification. I’m happy that I’m able to have an opportunity to still have a substantial impact on my adult children’s lives.

My personal goal is to make it to the birth of my first grandchild in April and see this little girl come into the world to replace my efforts anew. I’d like to be around long enough to introduce her to the Grand Creator who’s enabled her to enjoy life as I’ve had. We’ll see if I get that opportunity! You never know. Life’s a gift every day to enjoy!