Are there are any young onset Parkinson's patients in our group?

Hi @wkrebs59 - glad you shared this experience, since (young) early-onset Parkinson's occurs in 10-20% of cases, according to the American Parkinson's Disease Association https://www.apdaparkinson.org/what-is-parkinsons/early-onset-parkinsons-disease/. As you already know, this affects those who are age 21-50.

Tagging @21amy @joanneeckert @foundryrat743 @joanneeckert @sillyblone @casgarcia @joem, who have talked about (young) early-onset Parkinson's in themselves or someone to whom they are close. @shiver @Erinmfs @gigiraj @linda123054 @jenniferhunter @cmmichaela and @hopeful33250 also may have some input on the (young) early-onset Parkinson's or on the medications you were given before that had troublesome side effects for you, wkrebs59, topiramate (Topamax) that caused you memory loss and the propranolol that affected your heart at high dosage.

wkrebs59, what would you say has been the most challenging part for you of having Parkinson's at a young age?

This has been quite a journey so far with having Parkinson's. I have only known about having Parkinson's for about a year now. So for over twenty years I have blamed myself for not being able to do my job. I was a CT and MRI technologist working in the hospital. I could not start IV's which was part of my job. I started to work at a slower rate and pressure was being put on me and the only way I felt was to leave my profession which I loved helping others. It made me feel like a failure because my family income was cut in half and my husband thought I just didn't want to work. I feel a relief now knowing it was the disease but I still am blaming myself. It has affected many years of my life just to say it's ok now because it's not. I am looking at getting some counseling to help me relax and focus more on sleep I do not get enough of lately. Are there any others who have to deal with these issues? They weigh heavy on my heart.

@wkrebs59

I'm sorry to hear of the struggle you had understanding what was causing your symptoms. It had to be difficult to give up a job that you loved. I was not diagnosed for about 15 years; however, my symptoms started in my late 40s. It was a bit more difficult to diagnose, as the Parkinson's symptoms were related to an environmental exposure. I can understand the relief that you feel now that you have a diagnosis.

I see that you are seeking professional counseling. That is a good way to begin the process of releasing yourself from those thoughts of blame. It is important to move forward with treatment and physical exercise.

Have you been referred for physical therapy that is specific to Parkinson's?

Hi there , I agree it is time to let go if I know how to do that. My symptoms were the tremors for at least 2 years before I went to a neurologist who diagnosed Essential Tremors. I also had the locking of my vocal cords when I was upset and not able to talk and strong tremors in my whole body. It was over 20 years of thinking I had cause a financial burden to my family. I was still dealing with all the Parkinson symptoms not knowing it was Parkinson's.
Frustrations tremors slow walking balance issues I have all along had these issues. My neurologist has given me several Neuropsychiatrist to try and connect with. Does anyone have any advice or suggestions ? I presently do 2 days of tai chi and two days of boxing at a neurology wellness center where I feel safe if my balance is off . I also walk about 3-4 miles one day a week which is about all I can fit in along with a in person ladies support group of about 10 ladies with varying health issues but mostly Parkinson members. Thank you for any and all your ideas.

@hopeful33250 I have been referred to physical therapy for my Parkinson's when first diagnosed I attended the Big therapy class. I am still trying to find the Loud part of the therapy for my speech but my doctor has not been able to find one offered close where I live. The boxing class I attend is also through Banner Neurology Wellness Center so they do provide all their classes to aid the Parkinson patients. I go there and just pay out of pocket because I feel safer having trained therapists monitoring me in case I take a fall. The Big class focused on how to prevent falling and if we go down how to do it safely and how to get yourself back up!

@wkrebs59

I am glad to hear that you have had the Big therapy class. That sounds good. If you can get a referral to a speech therapist, you can get treated for the voice issues that accompany PD.

Beyond High C is a YouTube Channel that offers speech exercises for people with neurologically based speech problems. Here is one video: https://www.youtube.com/watch. There are other YouTube channels that offer voice exercises.

What type of voice problem are you experiencing? Do you have a soft voice, or are there also swallowing problems, or word-finding problems?

@hopeful33250 My doctor is still trying to find the Loud . I have been going to an Endocrinologist since 2022 when I had swelling in my neck. The Dr at the time did not do a biopsy but said the borders did not look like cancer. Every year since I have gone for a Ultra Sound of the thyroid. This year my insurance changed. New Dr. he said he had to do the biopsy it looked suspicious and too large. I had that last week (biopsy of both masses) My symptoms now are difficulty swallowing, hard to get words out, choking on pills and I found out I have a very large multi calcifications in large goiter. So Monday I find out if I will be having my Thyroid removed. It could be the Parkinson's or I have Thyroid CA. my labs are not normal so it has me everyday at one of specialists trying to help me. I do get a little discouraged. I need a lot of encouragement. I focus on my exercise and training to keep me going. So far I am counting 20 plus years and going strong but don' t know how long I can keep up the pace. What is the phrase. " Never give up or never give in! It has a new meaning for me. Fight to the end! My voice is getting softer the longer I have this because I have difficulty saying many words. Thank you for sharing and caring.

I am so sorry for all you are going through! I was tagged in this post for having early-onset Parkinsons but I need to clarify that I was never diagnosed with this disease, though I presented with some similar symptoms and doctors could not rule it out.

For almost two years my gait looked like that of that of a person with Parkinsons (slow, bent knees, shuffling, pausing, head down, back hunched). My legs were very stiff and often cramped and hurt. I experienced brain fog for at least that long and at times was slurring my words. I researched and researched, determined to do everything I could in my power to give myself as much time as I could with my husband and young children. I knew I had to take the best care of myself that I possibly could.

I read a lot about Parkinsons... About neurotransmitters, and how the brain and guts lack of ability to control them can cause gait disturbances. I listened to functional doctors and their suggestions for a person diagnosed with Parkinsons. Something that kept coming up was the word "glutamate". One functional doctor I listened to suggested that a person with Parkinsons should limit their intake of high glutamate foods to help slow their symptoms. I learned that all neuro-degenerative diseases cause an excessive amount of glutamate to build up in the brain, which can cause over-firing and excitotoxicity.

I had only heard of glutamate in reference to mono-sodium glutamate before that point but after looking into it further I realized that free-glutamates were in a number of really good and healthy foods I was eating (yogurt, cheese and dairy, heavily processed foods and oils, foods sprayed with pesticides, wheat, beans, slow cooked meals, leftovers, canned fishes, fermented veggies, tomatoes and tomato sauces, bone broth, nuts, among other things). Many of these foods I had been eating to try and help my gut (because I had been diagnosed with Celiac just about the time that my gait issues started-- a year after going gluten free my gait was only worsening). I decided to experiment by eating a half of a block of Parmesan cheese which contains an extremely large amount of free-glutamates. Within 45 min of eating the cheese my legs became so stiff that I could hardly move at all. I had a horrible headache and absolutely terrible brain fog. After that point, I began eliminating any other foods that also contained high levels of glutamate. I carefully portioned my meals, eating adequate protein but not over doing, sweet potatoes, quinoa, lots of salad greens, a bit of spinach, carrots, squashes, chicken that is plainly cooked with only salt and a bit of fresh seasoning, eggs, some rice, very limited nut butter etc.

After two weeks of eating a low glutamate diet I learned, on April 11, 2025, that not only could I walk but by the grace of God, I could run! It has now been nearly a year... I still eat very simply, which is not always easy (I have had to try to focus finding my joy in other things other than food, and trying to be very creative in the kitchen if I have a hankering for something savory or sweet!) but I am feeling great and I have time with my children. I am grateful.

I do not know if this information could be helpful to anyone. I only had a "maybe it's Parkinsons". This highly restricted diet may not be possible for some to try, but I wonder if people diagnosed with neurodegenerative disease could take a look at the foods they eat. Perhaps try keeping a food log for a time and ask: Does the bulk of my diet include processed foods that contain hydrogenated oils and sugar, or contain more than one or two ingredients? Is my diet heavy in tomatoes, sauces, dairy, broths? Heavy in slow cooked proteins? Do I eat leftovers frequently throughout the week, more than one day old? Do I eat a lot of fermented foods and veggies?

These foods are really good foods for some people (!!) not everyone should eliminate these, or all of these... but people with a glutamate sensitivity may have trouble with consuming too many of them, or too much at single a time or too many times in a week. (Everyone's level of sensitivity is different.)

Maybe trying to lessen exposure to see if symptoms improve could be worth thinking about? Working with a dietician may be helpful if trying a true elimination diet so that you meet your required necessary nutrient intake. (Most dieticians unless they are functional dieticians will not be familiar with a low glutamate diet).

I am very careful about choosing foods that are high nutrient and try to make sure I eat as many different veggies as possible. I do not eliminate all high glutamate foods but am very careful to keep a mental tally, so-to-speak, and not consume too much and see how my body reacts. (Sometimes I get a bit tired/ a little achey and wonder if I've eaten too much almond butter.)

I think it's important to include a bit of my health history, which is a bit extensive... But a complete story is helpful because often times diseases like to go hand in hand with one another. (Papillary thyroid cancer/ Hashimotos, Celiac and gluten sensitivity all go hand-in-hand).

I have a history of Endometriosis found in my teens, Epstein Barr infections including a severe infection that hospitalized me for a week in my late twenties, Hashimotos and Papillary Thyroid Cancer found in my mid-thirties, and Celiac disease that was diagnosed after two separate attacks of leg paralysis 10 years apart (no GI issues). This started before my gait issues and muscle stiffness that started just before I turned 40. I am now 43 and feel better than I have in years. My painful periods have become so much less painful and less heavy, I have energy. I feel great.

I am sorry for the length and I am so sorry for all that you are going through! The symptoms of Parkinsons are so challenging and everyone's individual experiences are so unique. I don't know if any of this may be of any help but I hope it may be something to think about. I hope you are able to get the care and support you need as you journey through this diagnosis. Please know that you are in my prayers!

@wkrebs59, I am sorry to hear about all your problems. I've had thyroid nodules, hyperparathyroid, as well as a paralyzed vocal cord. It is hard to always know which problem is causing the symptoms.

You definitely have a good attitude, and I can tell you are working to the best of your ability to stay strong. I hope that you get some helpful information from your appointment on Monday. Will you post again with any questions, concerns, or updates?

Hi @wkrebs59, I was diagnosed when I was 40, but I probably had it at least 5 years before that but it was missed by my former primary care physician. I have been living and working with it for about 9 years, and I am probably in stage II. Due to the support of my spouse and neurologists, I have treated it with a variety of medicine and have not had DBS yet.

Feel free to ask any questions, but I am not completely out of the Parkinson closet, so I may not be too specific with answers. This disease can drive you crazy sometimes. At times with the right medicine balance, sleep, and stress level, you can feel on top of the world and "normal," but the next day, Parkinsons locks you up to remind you it hasn't gone anywhere.