I was officially diagnosed 4 years ago and symptomatic for about 6 years. I am 54 years old. My symptoms are slowly but gradually worsening and get triggered by stress more than anything. I am a senior executive (CEO) by profession and have been on the job market since Feb 2024.
As a CEO I am required to be able to stand in front of large groups of people for presentations, meetings, speeches etc., work long hours and carry a load of stress.
Where I used to get an adrenaline rush in the past, this now causes for my symptoms to flare up to the point of distraction (to the employees) and embarrassment (to me). Typing only works with one hand, I deal with occasional fogginess etc etc.
I am at the point that I need to accept that I can no longer successfully function at that level. The problem is that with my resume companies usually do not hire to put you in lower, less stressful, positions for which I would be considered "over-qualified" so I am considering filing for Disability.
Does anyone have any experience with this? I am a California resident.
Thanks!
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BelgiumRepublic
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I can relate to your situation but never tried to get support from the government because luckily my husband was the earner. Also I didn’t know what was wrong. It seems to me that many people with PD have similar leadership positions that they must give up due to stress . Virtually everyone in my RockSteady boxing class is a self giving, mid level leader. It’s like PD targeted us!
Hi BelgiumRepublic, what I learned about the personality of Parkinson patients is that they usually have a lot of stress - by working or other reasons - and have a supportive and kind personality, i.e. it is seldom that they flip one´s lid or have heavy angry reactions. I am not a psychologist but understand that something in the past must have induced this friendly kind of reaction, swallowing anger, most often in childhood. I am that kind of person who used to be a workaholic, most often performing 120% in the positon of an assoc. med. director with a lot of challenges in private life. My husband died of lung cancer when I was 47 years and our daughter was 15. When I was diagnosed in the age of 66 years I was already working as a freelancer in pharmaceutical companies. Then I stopped working because of my problems with the disease (sometimes less concentration memory got worse...). One year ago I started to work again from the homeoffice 6 to 12 hours per week because I realised that at least for me the brain cells function like muscle cells: use it or loose it. By working at home I have no stress by having to perform in time- I just work when I feel fine, no presentations in front of a critical audience....Since the diagnosis I try a lot of things such as regular physical training, meditation, different supplements, special diet - avoid gluten and sugar, mediteraneon food, I react immediately to stress with starting of tremor, sometimes also during eating when my l-Dopa level is low and I eat food that seams to be not optimal for me. Protein I avoid during the day, only for dinner...and what helps me a lot: I exchange regularely my experiences with other patients that have a critical view and try alternatives. Despite tremendous investment of money - billions of dollars -since decades there is no cure, not even a way to stop progression. There must be something wrong in the way science is researching /focussing. There is a group of patients "resolveparkinsons" that have the target to convince medical scientists to integrate patient´s view and experiences with this complex disease into the research which should also focus on compounds that have no patent protection - which is the holy grale of research. I listen to the presentations of Dr. Laurie Mischley which has a holistic view of the disease and treats accordingly in her Parkinson clinic. "Tom Parkinson", is the phantasy name of a german patient in his fifties who wrote a book about his experiences. He tries nearly everything he is aware of. He already spent around 100,000 dollars. By doing so he still can manage the disease without medicinal drugs since 4 years. I exchange with him and another guy at least once a week and with the resolveparkinsons group. I still have hope to find the "cure" to at least stopp progression, which I expect will be a multicompound/multiprocedure for the complex disease that can express very differently in each patient. All the best!
Thank you and I agree with everything you are saying. I am still off meds and will try to do so for as long as I can by working out, sleep management, supplements, diet (I'm about to try a high fat/intermittent fast diet right now) etc. I found the Tom Parkinson and am ordering now. Your response is much appreciated
You are unlikely to get disability if you haven’t tried meds, and you might want to consider taking meds because it could make a huge difference in your symptoms. Please look up a member here named Jimcaster and Michel who is part of the No Silver Bullet team.
You will need well documented evidence of your diagnosis and subsequent deterioration. Having a Very good family Doctor or Neurologist who is willing to help you file your claim is a must. The unfortunate part is the Insurance Company will likely ask your company if there is any other job you can still do. Since Parkinsons is typically a slow progressing disease, the Insurance Company will argue that you can still work in a less stressful and reduced capacity. Citing depression and anxiety will help your claim - because it is a proven disability. I was a Design Technologist working in a unionized workplace - and the Union Fought for me until my LTD claim was approved, but it was a battle. It may be helpful to hire a lawyer, since they will fight for you. You will get approved but it will likely take some effort.
greetings BelgiumRepublic my name is Genaro Lucero. I like you am living with Parkinson’s, also like you im turning 54 this coming January 20. I was diagnosed in april of 2018. I am head of household there for my family depended on me. I tried my best to keep working but was having great dificulty performing me usual everyday task so not only was Ietting my familia down, but also my work family, I was an account manager at work so you can see a lot of responsibility and stress. Finally one day I took a bad fall and that’s when I realized I just not the same anymore. That is when I finally lisent to my family and let myself be taken cared for im lucky to have a loving family to be loved by and a few friends that stuck around. Now im on permanent disability I keep myself very active but now im finally enjoying life sometimes I think Parkinson’s was the only way for me personally to slow down and enjoy life. Good luck Belgium hope to one day visit your country 😎👍🏼🇲🇽
I began receiving disability benefits last October. I found the process rather painless it just takes a long time to work through the process (5 months). I never had to use a lawyer. The key is to provide very detailed and concise documentation when applying for disability. I was formally diagnosed two years ago after being hospitalized for viral encephalitis which left me with a permanent speech impairment and cognitive decline. I realize now that I was symptomatic 10 years ago but the symptoms were minor and easily ignored. My career path was engineering and middle management and knew I was having some brain fog and occasional tremors and other symptoms but I chose to attribute it to getting older. The encephalitis caused a rapid intensification of Parkinson’s symptoms after leaving the hospital and I was unable to return to work. When I submitted my application along with documentation I included every record I could find and my application was a couple hundred pages long. I had discussed my application with a disability attorney and that was her recommendation to include everything. I had one phone call from the eligibility agent that lasted ten minutes. Needless to say I was shocked when it was approved on the first try. The attorneys advise was to include everything you can find to support your case and why you cannot work anymore. She told me that the reason a lot of the applicants are denied is due to not including enough information or being sloppy when doing the paperwork. Hope this helps!
Mine took 5 months also. Like you, I presented detailed information and I also got a 5 to 10 minutes call. The funny thing was that she ignored Parkinson's and focused on my anxiety and depression and wanted me to fill out a form and write a letter saying how my mental health made it impossible to work. I could genuinely feel that she was trying to help me.
Hi, a little unrelated. Have you tried nicotine gum? My husband does a lot of public speaking and this seems to act as a rescue med. A stimulant but also a calming agent which is hard to find in conventional big pharma meds. He talks faster, can think clearer and has more energy and it calms tremor. Not long acting, a few hours, but worth a try.
Being unemployed for a year is good because that is almost a requirement. I spoke with a lawyer who Told me to go through the application process and to call him if they rejected my claim. I started the process in early 2023 and was approved after about 10 months. They gave me some back pay and now I am starting the process of applying for Medicare, because you have to be on disability for two years before you are eligible if you are not 65. It was fairly stressful at times but I managed. Having a PCP and neurologist who are experienced with their part is helpful. Good luck.
p.s. the people I spoke to at the SSA were very kind and helpful. I had a couple of meltdowns during the process because I felt really overwhelmed and the two people on my case were very nice and compassionate (which is not what I expected at all).
Thank you for responding Julie and happy to hear that you were treated with kindness when going through the process. Good luck with everything going forward!!
Stress definitely impairs executive function and this prevented me from being able to perform my job duties. I was Dx in 2018 while working in California, I submitted a disability claim to the State of California and it was immediately approved. Once those funds were depleted I submitted to Federal and was denied. I hired a disability lawyer and my claim was approved. Hope this helps.
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