[Tina]

I’ve changed over the years as the disease progresses. I had to retire 9 years ago and symptoms have been on their steady march. Two years ago my kids bought a house and I live in my own little “apartment” while my daughter lives in the rest of the house and manages it

I’ve found it necessary to develop new friendships for emotional  support. My adult kids can’t really handle the day to day stuff I deal with and my family is non-communicative. Doctors only have a few minutes and I don’t regularly want to pay for visits to the psychologists they’ve referred me to for someone to talk to about dealing with all the changes.

Since I have a more life threatening chronic disease than PD, it overwhelms me sometimes. My day to day plan is working in the yard and meeting with friends online on zoom and instagram etc.  I study and pray.

I still do all my finances and shop online for needs and manage my RXs. I run little business online for a few extra spending bucks.  I’ve had meals on wheels for years for dinner and manage my breakfast and lunches.

When I get upset or depressed I come to the forums to see what’s new and what others are going through. I can still manage my own contacts, the occasional shopping trip and my life overall so I’m grateful for that. It’s not easy but that’s life and there’s always someone worse off as we all know

I’m glad these forums exist to let us vent a little and know we’re not alone on this journey

 

[Tina]

I’ll try typing this again. I’ve had Raynaud’s disease longer than I’ve had PD symptoms, over 30 years. I was tested for cold sensitivity and it came up positive. I didn’t need a test to tell me my fingers, nose and ears turned blue in the cold. The pain is so extreme every day no matter what the temperature—I’ve always lived in the south. I’ve been on Gabapentin for the pain in my extremities from neuropathy for 6 years. Without it it’s like being hit with a hammer repeating the throbbing is so bad. I was diagnosed with small vessel disease 5 years ago and been on seizure meds for 5 types of excruciating headaches and seizures. I was finally diagnosed 3 years with PD and MG for both kinds of tremors I’ve had for over 30 years. It just takes the right doctor. I have these phantom insects on my legs and also auditory and visual hallucinations when my meds get off because I don’t take them on time, don’t eat, lack of sleep or get upset etc. I only take Ropinerole for PD now because it seems to control symptoms. My point is that it’s either a nerve or blood vessel thing going on with the brain miscommunication in PD. Taking something that will deal with neuropathy and/or problems with constricting blood vessels may help in addition to PD meds. It’s helped me. Another thing I’ve noticed is when I don’t get enough fluids the leg “insects” start their thing again. It’s really hard to ignore them as it gets maddening and I figure if it becomes a daily problem I’ll have to complain to my neuro. But so far controlling everything else I’ve mentioned along with taking the meds on time has worked

[Tina]

I use a weighted blanket, satin type sheets, polyester/satin slippery night clothes to help me turn and get out of bed, memory foam mattress and a large pillow between my legs at night to help with back pain, negative recessed sandals (like Birkenstock’s but much cheaper) to keep me from slipping, cotton type socks to help from slipping and injuries to the skin, keep puzzles and things I like close by my recliner when I’m feeling restless and depressed, scheduled alarms of ringtones I like on my phones to remind me of my pills instead of alarms which upset me, multiple cell phones which helps to avoid panic if I can’t find a phone, alexa so I can ask for the time etc if I don’t want to get up or just want to hear another “voice”. A lot of these are dumb but there’s a lot of dumb things that happen with PD and it helps me to stay on track mentally and emotionally

[Tina]

Whenever I don’t use my cpap I have dreams and I’m exhausted the next day. I have dreams and wake up 4am if I don’t take my Ropinerole on schedule or eat something with sugar after 9pm at night—shame on me! I also have them if I get an infection, because usually I have to get up at night so my sleep will get disrupted. I figure it’s my REM getting disrupted so then I’ll get these dreams. I’ve also had this going on ever since I was a kid, except for the cpap. I use a weighted blanket and nice sheets and a “My Pillow” and I t all helps a lot

[Tina]

I injured my back several times throughout my life and have damaged disks all along my spine. I tried everything to deal with the pain and it was alleviated periodically. In the last few years I’ve been sleeping on an air bed with eggshell cushioning and it was wonderful. I just switched to a memory foam mattress and it seems to be working well. I also switched from a soft oversized recliner to a smaller more supportive one so it seems my back has gotten stronger.

I think you just have to give it time to heal and keep trying until you find what works. It’s a process. I was willing to try anything to prevent surgery if I could, and it seems to have worked. I’ve also tried a zillion support pillows to sit on and still drag them while out in public and it’s kept me from reinjuring my spine while traveling. Yeah it’s a little embarrassing but I’d rather that then suffering more pain.

I don’t think my back problems have anything to do with PD except for the fact that my impaired gait and resultant falls caused the injuries to my back.

[Tina]

Jo S. I feel for you. When I started this “journey” I felt very much alone. I had to adjust and try to open up to others to get some emotional and practical help, despite my hesitation to do so.

I’ve always been perceived as extremely independent, one who helped others and refused help from others. But I quickly discovered this is a condition that makes the sufferer and caregivers dependent on others for support.

I started sharing my status with others, making my needs known and accepting whatever helped was offered. I found people are incredibly understanding and supportive of this condition.

I’m confident you will find this support as well. It just takes reflection and acceptance, and the rest will follow. It’s important to let others “spread the love” as it can quickly become overwhelming for them when they realize the needs are ongoing and progressive. The same goes with caregivers in the family and friends.

[Tina]

Mary Beth I moved in with my daughter who bought a house with a downstairs “apartment” for me. It’s beautiful and about the same space as my former apartment. There’s a large yard with lots of flowering trees and  birds and it’s very peaceful

The only problem so far is that it’s on a little “hill” that I can’t descend or ascend so I really can’t go check the mail. The post office won’t bring packages up so I haven’t been able to get my belongings I had shipped.  I’ll have to change my habit of ordering everything too. UPS and Fedex will deliver to my door so I’ll just have to make sure everything goes through them.

I have long list of things to do which is daunting and I have to “ask permission” first with anything regarding the house. So like any change in life there’s adjustments, positive and negative. I have to revisit my priorities constantly, and there’s both physical and mental activities so it’s a good balance each day.

So far it’s been costly which is causing anxiety, and I’ve had to buy and prepare food again this first week. I know I have to quickly get assistance in this area, along with change of insurance and medical care, address changes, furniture etc etc.

My daughter is so swamped at work and doesn’t own a vehicle by choice so it’s going to continue to be a challenge to adjust to a new environment apart from former friends and assistance. But I know it’ll all work out, I just have to do what I can, be patient and supportive of her situation too, and laugh often. Another adventure!

[Tina]

Thanks Mary. I do use my ipad and phone to record thoughts as I have a hard time remembering ideas. It’s frustrating always having to correct the app’s typing but it’s still rewarding to feel I’m accomplishing something.

I think after I get settled in after my move I’ll get serious about it. I figure if I can just work on the table of contents first to outline the work, then I can   focus on a chapter at a time and maybe I’ll actually get it done. We’ll see if I’m really going to be able to do this before more of me is “done” from PD.  Chin up!

[Tina]

yes Steve and it’s bad enough at home let alone being out in public when it happens

[Tina]

I found I had to give up caramel and fudge, as they were  becoming too difficult to process in my mouth. Both have always been part of my existence, and our family has its own versions we make. So I thought it ironic I’d have to give up this lifelong habit.

I also found that I couldn’t tolerate the taste anymore, I got nauseous as soon as they hit my stomach. I still love the thought of them, until I remember how my stomach turns lol

[Tina]

Mary Beth thank you. It’s funny to think about accomplishing something like that when I’m in the middle of moving. Maybe one day I won’t feel consumed like I do now, and I’ll take a shot at it. Never hurts to try to expand one’s life experiences and revisit that bucket list from time to time.

[Tina]

Paul, thanks. I spent decades in the “words” field using various skills in different jobs. I always thought I might write when I retired but I find it so frustrating trying to think and type now. I guess that’s why when I come here and open up my mind it all spills out.

No one on the outside of this condition really gets it and I don’t have the motivation or energy to try to help them understand it. So I’m grateful for this forum

[Tina]

Mary Beth It started about 3 years ago. I’ve figured out that I first started having PD symptoms about 22 years ago. I was diagnosed in 2019 after they really got bad and I started  meds which have helped immensely.

I had horrible migraines and sinus headaches my whole life. I blacked out and fell ever since I was a kid but the drs said my headaches had nothing to do with it. Ice pick headaches deep in the middle of my head and through the temples as well as cluster headaches started 6 years ago followed by 3 retinal detachments. My doctors said they had nothing to do with it, although I had massive pain behind my eyes each time they happened.

The “boot to the back of the head” headaches started 4 years ago, about the same time the “rag doll” shaking did. I suspected something was going on with my motor control.

The “sledgehammer on the top of my head” headaches happened right before I was diagnosed with PD. I went to the ER as I thought I might be having a stroke since it runs in my family. My blood pressure “went through the roof” they told me, which was weird as I’ve always had 80/60.

So I’ve come to the conclusion, at least in my case, that the headaches are a sign of a problem with the “dashboard” in my brain. I’ve always had a long list of medical issues following these headaches my whole life, which I think are really just symptoms and a smaller part of the larger problem, an issue with my brain wiring or something like that.

My drs have never really figured out my blackouts and falls since I was young, like age 5 at least. They thought I had polio back then. So maybe PD is somehow part of a genetic thing too, since my dad had “the shakes” as it’s called in my family.

Michael, my mom had some kind of mental problem we thought because she was verbally abusive. I’m the only one that she physically abused, dragging me down the hall by my hair and slamming my head on the ceramic sink in the bathroom. She said she hated washing my long hair which my dad liked. Drs have told me that’s enough to have caused trauma to my brain, so I think it may be a part of it. I’m not the only one with headaches in my family though.

I first noticed the shakes with my dad when he was about 40. He used to get so emotional, like angry and cry, that I didn’t know what was going on with him. When he was about 70 he started shaking, falling and whatever else and they thought he had ALS. They sent him to Cleveland Clinic and did a nerve biopsy but never figured out what was wrong with him.

It turns out though that I was diagnosed with Myasthenia Gravis last year so maybe he had that instead of, or in addition to PD, like me. It’s an autoimmune MD disease. My older sister has the same emotional rages like my dad did and falls a lot, and she has autoimmune rheumatic arthritis.

So I really think a long burn PD condition that’s familial like mine is possible too, not just like M Fox has, which was pronounced from the start. My dad and me both started having symptoms around 40, and it didn’t get bad until 20+ years later. I don’t know when my sister’s symptoms started but she had rheumatoid in her teens. She’s been so emotional the last few years she refuses to talk to anyone in our family, which adds to the stress.  This condition has definitely taken a toll on our family.

My son, who is now 40, first noticed a twitch in one of his eyes in his 20s. I’ve had the same twitch since my 20s. So I think it’s definitely a slow burn in some families, not just the rapid decline like M Fox had. I’ve never heard anything about his family so I wonder about that. Does anyone here know about that?

[Tina]

I was wondering if anyone has had the feeling of being shaken like a rag doll. I could put up with the tremors and headaches until I felt like I was being grabbed by the neck and shaken, while the base of my head felt like I was being kicked.

Since I’ve been on a dopamine agonist it’s been under control unless I get overly stressed, upset or fatigued. Then I start to shake all over again and am forced to talk myself into calming down.

I wondered if this shaking all over inside is what some of you were describing as internal tremor.

[Tina]

My neuro told me to make a conscious effort to try to focus on a thought instead of trying to get everything done on my list. I was always proud of how I got everything done. Now at the end of the day I still look at what I accomplished, but I know if it’s more than three things I was too hard on myself and I’ll have a hard time sleeping. So I’m learning how to scale back as I don’t want to become anxious

[Tina]

Joe and Robert I appreciate you describing your emotions. I was known for controlling my emotions and keeping my head in professional situations when others were losing theirs. The last two years I’ve been staying home because I laugh or cry at the simplest things, sometimes uncontrollably. Going out to the movies is especially bad.

My first symptom was a cogwheel tremor in my left arm when I was 40. After an auto accident from a blackout seizure, a physical therapist found it. I had never noticed it and didn’t even know what it was. About 1 year before that accident I had to pull over on the side of the road as I couldn’t move the left side of my body.

Then small tremors started, intestinal issues, crying spells, seizures and falls. I was forced to retire as I could no longer drive or type, as my left arm shook uncontrollably, but only when typing. Then my gait changed and I had to use a walker at 55. I did a lot of physical therapy and was able to eventually stop using walking aids.

The whole time I was seeing a neurologist along with multiple other doctors. It wasn’t until my current neurologist asked me to walk across the room and saw me walk without an arm swing that she diagnosed PD.

I was shocked and angry, but I accepted it when I realized it explained why I was having hallucinations, losing my singing voice and my talking voice got hoarse and stopped.

Now I’m on a dopamine agonist which has controlled the hallucinations and tremors. My gait is still extremely slow and I have extreme osteoporosis so I’m really trying hard not to fall. I was first diagnosed with bone loss when I had that accident which seemed at the start of my PD. I’m 62 now so that would be 20+ years since my first symptoms. Not exactly early onset I think since it’s been a very long and slow journey for me

[Tina]

No I don’t feel I’ve been stigmatized. It’s made everything easier for me. I always tell people I have it because it puts the label on what they observe. It makes them instantly understand and enables them to go on dealing with me without wondering. I’ve accepted it myself of course. Otherwise I doubt I’d be able to do so. I also go out less often, usually only when I’m up to it, so I’m probably feeling at my best when dealing with others

[Tina]

I have the same issues and have withdrawn a lot. My friends were concerned at first but now they accept that if I’m up to it I’ll go out or accept visits. They’re considerate and text or call before dropping by to see if I’m up to it.

Of course I’m not happy with these circumstances as I’ve been an outgoing person for the most part of my life. I just look at it now as getting some quality alone time with myself. The majority of my life has been spent over achieving so I try to think of it as finally getting my retirement, just a little early.

As MJF said, “It is what it is” and that’s become one of my new mantras, which has helped me to be content. I try to text or call someone every day to stay current, maintain interaction with others and avoid becoming too isolated.

After I move in with my daughter next month there will be adjustments and different issues as well, so I’m planning on pacing myself more.

[Tina]

All these comments are familiar to me. All. So I think in my case it’s probably family genetics of tremors, environment and personal body makeup and experiences. Which adds up to anything or everything, time and unforeseen occurrences.

I always tell people each day is a gift and no amount of healthy food, practices and sleep is going to erase the fact that I could walk outside and get hit by a piece of space junk or a bus lol. So everything in moderation.

I say, “May you live long and grow as old and ugly as me because that means you did as best as you could. If you didn’t, you’ll exit early by making too many unwise decisions or being too ill. You’ll get another chance in the next life with God’s mercy.”

I just can’t dwell on the negative. It’s been a hard road so far and I like looking at nature and still doing what I can. As we used to say in the 70s, “Keep on Truckin”

[Tina]

Jean and Mary Beth,

Thanks for your encouragement. That’s exactly why I come here, and to listen and encourage others. I can’t imagine what life would be without the internet in trying to understand and deal with this condition.

Unfortunately at the MG site I get the feeling of having to try to constantly push oneself and start fundraising campaigns for MG etc, which I just don’t have the capacity to do. I don’t know if it’s the PD symptoms slowing me down in addition to the MG, or maybe because I may be older than a lot of MGs, but I feel more at home in this forum. I’m very grateful it’s here

[Tina]

Garrett I can really relate to what you said and I like your mantra “My ambition exceeds my ability.” On an hourly basis! I’ve come to accept my need to sit down and clear my mind before I start the next task.

Jean I was always a type A too and I still have a long list of “to dos”.  I’ve tried to focus on prioritizing and literally patting myself on the back when I complete a task. Seems childish to me but it works so I’m going with it! I’ve found that there is never a moment when I have an empty list. So I’ve come to accept that it’s just how my mind works, always has.

When I’ve looked back at my life I feel I’ve accomplished everything I’ve set out to do and it’s all gravy now! I’m excited about whatever comes my way, and my next big goal is to maintain courage and dignity in dealing with this PD.

[Tina]

Linda

I don’t know if it would work for you but when I start a new med or dosage and get nauseous I eat saltine crackers and water. It coats the stomach and absorbs acid. I also eat a flavor of jello I like and it helps. Sometimes it’s bad and I can only eat a few bites but it helps. Then homemade chicken soup.

It’s weird that stuff they give you in the hospital works but I guess that’s why they do it. Of course after the nausea’s gone I can’t stand these foods. But I always keep them in the house and the soup in the freezer as I don’t always know when it’s going to hit. Mashed potatoes works too and sometimes applesauce and oatmeal.

[Tina]

Toni, yeah this forum is great. It helps to vent with those that can truly understand. And it gives our family, friends and caregivers a break from our comments when we’re not at our best.

I go online for info and to listen and vent. I see my neuro once a month to complain lol. I pray and meditate as often as I remember to, at least daily, which alleviates stress and keeps me humble and grateful.

My eyes are shot so I don’t read anymore, but I do listen to a few things, mostly the audio Bible and some music. My brain just gets a headache trying to listen to unfamiliar words like stories in books. I do like to watch funny videos, as tv subjects can get boring, immoral, obnoxious, or depressing.

I just can’t believe that 6 years ago I was investigating financial crimes, developing felony cases and writing ongoing hundred page reports for the 40 cases in my head and files. I also conducted seminars and published articles. I traveled all the time, and now I get lost in a previously familiar airport, and don’t discover I’ve left my bags there until I’ve arrived home.

Whatever neurotoxins my generation was exposed to is truly criminal. Sorry if I mispell some words, I’m having trouble remembering how to spell and compose correct sentence structure. I used to be a grammar teacher and editor, as well as a writer!

Well I hope this is not to distressing to others here that I’ve shared all this. I was hoping to connect in a group offline. My PD group meets only once a month for an hour with about 20 people, so it hasn’t been much of a help to me—except to see there are others far worse than me, so it keeps me grateful.

Most of the people with advanced cases are far older than me, and the fact that they attend is upbuilding in that way.  It’s just the program is designed as a speaker type info session, with no real interaction between attendees except the few minutes before and after.

This forum is accessible 24/7/365, and I consider it a God send. Otherwise I think I’d be stuck in front of the tv too much. I thought of starting a blog, but I know it’s too much to manage. I’m looking for encouragement, not more work!

[Tina]

Same thing happened to me. Too much typing!