To Go or Not to Go - plea for community h... - Cure Parkinson's

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To Go or Not to Go - plea for community help

63 Replies

Hi Friends and Comrades,

I need your inputs, your opinion and your encouragement or sane advice for a most important event next week. I would also like your good luck charms, well wishes and blessings for my success. If I accomplish my goal, I will consider it a community accomplishment.

I am an IT professional with extensive and enormous experience and expertise in my specialty area. I was laid off in January and have been on State disability since. However, the disability runs out next January and the disability income doesn’t cover all of our expenses. A job is necessary.

So, I have been applying for a number of jobs since January and I have not been successful until two weeks ago. I got a job which is decent but pays far less than I used to make and is a contract job but in a town 2 hours away and will require my personal relocation. My family can’t come with me because my daughter is in high school and can’t change schools in her junior year. The cost of renting a separate apartment in that town is going to be an additional burden.

Something amazing happened last week. I got cold called by a recruiter from one of Silicon Valley’s foremost technology companies and was invited to apply for a job. It is a Sales Engineer where my responsibility will be to assist sales folks in their interactions with their customers and help explain the technology and assist the customers with custom solutions. I will have to make presentations, lead workshops and communicate customer requirements to developers and other engineers. It is a very big deal. Most people don’t even make it to the onsite interview stage.

I thought I would give it a try because I was “very sure” that I would not pass the screening interview over the phone. However, I was surprised to hear that I passed and I have been invited to the onsite interview next week. It will be a three hour interview with multiple people. There will be whiteboarding too.

I have not been people facing for a while and I am tremor prominent and I have dystonia dyskinesia episodes which affects my gait. I have slurred speech issues that manifests itself when there is a Levodopa imbalance. I have social anxiety issues that came with my Parkinson’s diagnosis. My self esteem is low and my self confidence is lower. All these issues are being addressed by medication such as Rytary and Zoloft as well as Propranolol, Trazodone and to some extent with a new diabetic medication: Bydureon (exenatide) that is supposed to help Parkinson’s patients. My tremors are well controlled with Rytary and Mucuna. My gait problems can erupt anytime. It is so random.

So, given my issues above, I was thinking about telling the company that I wasn’t interested any further. I thought about disclosing my disability and decided against it because I noticed a pattern where no company to which I disclosed it would select me even for a interview. The job I received already did not need a face to face interview and I did not tell them about my Parkinson’s. So, I am convinced that disclosing my condition would be a liability. Also, my job would require people interaction, some travel and lots of communication. I don’t think that the company can give me any reasonable accommodations for this particular job.

That leaves me with a huge question. Should I go ahead and attend the interview? I am afraid of embarrassment and making a fool of myself if I start tremoring or develop dystonia or dyskinesia. I am still adjusting to Rytary , so things are still unpredictable. I vacillate between going and not going.

I have throughout my entire life believed in fighting and never giving up or accepting defeat. I tell others to fight for all that they deserve with everything they got. I have given motivational speeches and have done extensive public speaking. I feel so bad that my disability has reduced me to this. I do feel that if I steel myself and face my demons and if I ace my interview, I can be a shining example to other young onset Parkinson’s patients who might have lost their nerve. I am only 54.

Sometimes I feel like God is testing me to see if I would use my disability as an excuse for laziness and settling into a sedentary lifestyle. I have been thinking about this for quite some time and I don’t have an answer. I think about whether I will be up to it and do my job with dedication and strength if I do get it. I have obligations too. I have to put my daughter through college and get her married and pay for it. In our orthodox Hindu culture, educating our kids and celebrating/paying for the daughter’s marriage is a requirement. I feel like if I give up on this opportunity, I might not be motivated to do anything else.

What are your thoughts?

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63 Replies
KERRINGTON profile image
KERRINGTON

Your succinct, and well articulated post demonstrates beautifully that you have what it takes, so go on the interview ! You will regret not going. First, this interview gives you the chance to assess the personalities of the interviewers. You'll get a sense of whether,or not you'd be happy working for them. You'll also get a better understanding of how taxed you will be re travel, presentations, etc, Companies in the USA eat you up alive....

Final thoughts.... also, maybe you may decide against it.

If you don't get the job who cares !!! You gave it your best, and you still have your current job :)

in reply to KERRINGTON

Thank you for your encouragement.

Tenafterten profile image
Tenafterten in reply to KERRINGTON

I agree with Kerrington.

ion_ion profile image
ion_ion

Man, that's tough! I do programming ,too, and interact with customers but after I have been diagnosed I tried to avoid that as much as I could. Two days ago I had a conference call with a customer and I was shaking even they could not see me. To calm down I was just moving around the table and talking to the speaker phone. I used to be very combative but now I avoid conflicts and interactions as much as I can.

I doubt you'll be able to hide your symptoms during the interview but who knows!?

I think you have nothing to loose. Very possible if the things go well you may calm down and handle it.

In your place I would give it a try but programme yourself that way to remove any emotions and not care about the outcome.

Good luck!

in reply to ion_ion

Thank you.

PDGal4 profile image
PDGal4

Wow, this is a tough one. Would the Sales Engineer job require you to relocate too, or would you be able to remain with your family in your home? Would you accept the job if the 3 hour interview were a success and you were offered it? If you were offered the job and you accepted it, do you think you would be able to perform well the people interaction, the travel and lots of communication? What is your goal that you talk about accomplishing? Have you defined it?

Those are the questions I would begin to ask myself. You write that if you 'ace the interview, you can be a shining example to other young onset Parkinson's patients who have lost their nerve.' Who are these patients?

You will know in your heart what the right decision is. I suspect you already do. You are not using your disability as an excuse for laziness or being sedentary. You are, like all of humanity, doing the best you can with what you've been given.

Keep us posted.

in reply to PDGal4

Thank you. You do ask some good questions. This job is near by so, I don’t have to relocate. I think there will be a couple more interviews if I pass this one and I do believe that I would accept it if offered.

My hope is to “normalize” my life, but I am not sure if that is even possible.

FMundo profile image
FMundo in reply to PDGal4

I admire the hell out of both of you.

MBAnderson profile image
MBAnderson

In one paragraph you describe extensive personal interaction that require precision and focus, every day, under pressure, and in front of groups and 2 paragraphs later, you describe all the symptoms that would make this a near impossibility.

I agree with Kerrington that you should go on the interview unless you're sure that if you don't go, you will not be second-guessing yourself and beating yourself up.

If I were you, and I went to the interview, I would do it fully expecting not to be hired and that for 2 reasons. You will be more relaxed, more casual, every question won't be a make it or break it moment, and secondly, the hard, ugly reality is that the vast majority of companies do not hire people who are obviously handicapped because of their impact on their insurance premiums, the cost of accommodating them, fear of EEOC complaints, and discrimination lawsuit. They figure, why take on what could turn out to be an expensive burden when the very next guy might be fine.

If you could look for 'work from home' opportunities or some types of consulting or become your own, one-man consulting company, that might open the job market to the whole country.

You're in a tough situation, but you're a smart, smart guy. Trust yourself. Whatever decision you make will be the right one.

I'll cross my fingers for you. That'll be a big help.

Good luck.

Marc

Thank you very much, Marc.

It does not seem like this job is a good match for you and not worth the stress and anguish it will cause. I suggest you spend your energies looking for opportunities/roles where your PD symptoms would be less of a concern/issue... Best wishes to you...

in reply to

Thanks

faridaro profile image
faridaro

Unfortunately can't offer you any words of wisdom in helping you make the decision, but sending my good wishes for getting the right job which will be rewarding personally and financially. Hope you'll find success and happiness!

in reply to faridaro

Thank you.

enjoysalud profile image
enjoysalud

I do NOT have PD, but was a caretaker for my son.

I have always believed that it is better to lose the race (be rejected by another) than to not participate in the race (reject yourself).

Only you can decide...............good luck.

Los Angeles, CA, USA

in reply to enjoysalud

Thanks.

ConnieD profile image
ConnieD

I’m 53 and at one time worked in Human Resources full time in a hospital. I dealt a lot with the public and recognize I couldn’t do now what I did then. I believe in having a positive attitude and pushing myself but also I’m at a point where I need to look for ways to make life as stress free as possible. I also get dyskinesia which can be unpredictable at times as well as dystonia myself, this job sounds incredibly stressful. The interview alone would be too much for me. I think it’s awesome that you’ve come this far and you should feel proud of that. If I were you I would want a job less stressful since stress only makes my symptoms worse. You still have many years ahead of you and need to consider your health As well. Could you do consulting from home? I was telling my sister how stressed my husband is who is 54 (no Health problems)and is in medical sales. He travels a lot for work , he’s been at same company for 30 years. He is really exhausted and stressed from all the

traveling and wishes he could do something different. My sister was telling me about someone she knows Who had A stressful corporate position for many years and gave it up to become a mail carrier. He said I love it there’s no stress I get to walk every day and get my exercise it’s great he said. You may be very different from me so I don’t mean to completely discourage you but just sharing some ideas to maybe help think it through. Good luck and God bless.

in reply to ConnieD

Thanks for your helpful message.

dcpambrose profile image
dcpambrose

I appreciate your will power and your responsibility towards the family. Never give up. Fight till how much as you can. Attend the interview with confidence. We are alive. We could fight this monster we are battling with trust in God and our positive attitude. If it is God's will you will be blessed with good colleagues who will understand you and help you.

Best wishes.

in reply to dcpambrose

Thank you very much for your encouragement.

JAS9 profile image
JAS9

I was in a similar boat. I'd been diagnosed in 2008 at 51, but continued to work in Silicon Vally as a programmer and manager. In 2013 I got laid off and I applied for and got State Disability Insurance. I went to 2 interviews and didn't get the jobs, but I don't regret trying. My PD symptoms got worse, and I applied for Social Security Disability. It took about a year to get it, but that's what I've been living on ever since. It never runs out. I had to move to a less expensive town, but it's still nice enough. If you think you'd qualify, you should apply. With it, they allow you to still work on a limited basis.

I'd say go to your interviews, but it might be time to recognize that we are all limited in some way and that it's sometimes wisest to accept them and do what you can.

in reply to JAS9

Thank you.

billiards profile image
billiards

Reply to faridaro,

I am pure vegetarian, and have lived a life of eating home prepared food. Since i was born i was a recluse as my parents (arranged marriage) of 1938 when i was born . as my father was clever man made good lot of money and divided among his brothers. Since then, i struggled as a destitute and made a life of a Deprived child, youth,. But since then i struggled , but this deprivation lead me to live a desponded life . i feel that is the cause of my becoming a victim of ParkinonS. And not any other health problem. Even today being 81 years old I am free from Diabetics or Hypertension etc. I am living in a perpetual sadness . let me like to draw your attention to sad life of mine is the cause of my suffering from PD.

Regards

faridaro profile image
faridaro in reply to billiards

Billiards,

Sorry to hear about your sad circumstances. It seems to me that since there are such strong variations between PD symptoms, there are might be different causes of this disease. Emotional and financial deprivation creates a lot of stress which in turn kills neurons. I went through extremely stressful year in 2015 when every day I was waking up with knots in my stomach not sure if I can face another day because of my son's illness and then was diagnosed with PD in 2017, so I feel there is definitely a connection and stress might be a big if not major factor in PD.

"Perpetual sadness" might be due to lack of dopamine or deficiency of other neurotransmitters which might be possible to address with some medications even though some of meds have bad side effects which you may not want to deal with.

I am a pessimist by nature and have to fight myself each day to focus on positive things in life and see the proverbial glass half-full instead of half-empty. My son has a disability and I am a lot around people who can't see, walk or take care of themselves but still seem to enjoy their lives. So, it's good to be thankful for whatever abilities we have and look up to others who stay positive despite their unfortunate circumstances.

Wishing you well and hope you'll find joy in little things in life - I know it's easier said than done, but keep on trying, that's what I am learning to do.

jeffmayer profile image
jeffmayer

this is a tough one I do believe in fighting this shite condition while there is a breath left in me but seems like a lot to take on I admire your drive and fight only problem I can forsee is if you get the job then it comes to light about your pd ewill it cause more stress respect to you whatever your decision

in reply to jeffmayer

Thanks. I am thinking about disclosing my disability if I get the job. At least at that point they cannot rescind the offer, at least that is my thought.

PDGal4 profile image
PDGal4 in reply to

I would check, but I believe by law in the US if you choose to disclose, you need only say you have a disability, but you are not required to say what it is. And they are not allowed to ask.

ion_ion profile image
ion_ion in reply to

I think it is not a good idea to disclose right away after being hired. And when you do it don't tell them exactly what you have. I told them in my place I have a health issue and take medication for it.

in reply to ion_ion

Thanks

KERRINGTON profile image
KERRINGTON in reply to

I disagree about revealing your condition...you'll never be considered.

jeffmayer profile image
jeffmayer

Like I said respect to you all the best

Pan13 profile image
Pan13

I think you need to be honest at the interview about your condition good luck

in reply to Pan13

Thank you for your kind input.

Millbrook profile image
Millbrook in reply to

Go for it and wishing you all the best. At least you know you tried. If you find it all too stressful, go for something else because it’s not worth your health.

in reply to Millbrook

Thanks

marnegro profile image
marnegro

Hi Malayappan, I’m 54 too and I was diagnosed in 2007. I hope my experience help you to decide your course of action. First of all, I have never been identified with another PD patient before like with you. You have described almost word by word my deep feelings, my thoughts and my soul. I am a financial professional and entrepreneur ( forced to early retirement by Mr. Parkinson) and I was very experienced and professionally recognized by fellows and clients. There was no a single time but few opportunities to work that I was tempted to do something like you are now. I did and it was not a wise decision in my case. Some of the attempts were a disappointment to both the employer/contractor and to me and other instances I had to quit after started because my body simply do not respond like when we were disease free. Simply our body do not match our spirit. Sometimes I disclosed to the interviewer my condition sometimes not, but no matter what you decide to do they will know or will have a gut feeling that something is wrong with you. We are not at early stage in our illness, I mean now we are like kids don’t know to lie or how to keep a secret as the PD took out from us that hard shell to remain unyielding in the face of stress. It was hard to me to accept that truth and that still attempting to do so is like burning bridges or wasting ammunition’s could be valuable in the future if we are lucky to overcome the illness, who knows. Now me and my family have redesigned our lifestyle accordingly and I Keep focused on to make lemonade with the lemons. Regards

in reply to marnegro

Thank you very much for your insight.

LTT0019 profile image
LTT0019 in reply to marnegro

I am 62 and was diagnosed in 2012. I so agree with your statement "Our body do not match our spirit" I had to go out on disability in 2017. This was the hardest thing I had to do in my life - so many people relied on me - I was the go to person - admit I could not do my job -no no no - But, if I tried to continue I could kill a patient. I could not harm someone by not admiting the truth PD has changed my life.

ladyaudree profile image
ladyaudree

I think you should go to the interview. As you and others have said, aside from stress you have nothing to lose. And if you don't get this job, there may be some other position that given your background you could handle. Good luck!

in reply to ladyaudree

Thank you.

KERRINGTON profile image
KERRINGTON in reply to ladyaudree

I agree, he's def on a ''roll'.

I gave seen an ad for something called ' Touch Point' which is a wearable device ( wrists) that sends a mild current through your body and confuses it into not shaking. It costs around 150$. It is for those in stressful situations that amplifies their tremors. This brings them down. My husband is still debating it. I say anything helps. If you decide on the interview, very best of luck.

in reply to AngloAmericanGothic

Thanks for the good wishes.

ion_ion profile image
ion_ion in reply to AngloAmericanGothic

That device does not seem to be reliable even it does the work as it does not last long.

Here I found something else:

microsoft.com/en-us/researc...

AngloAmericanGothic profile image
AngloAmericanGothic in reply to ion_ion

I saw this when I was in the UK. Unfortunately it is still in the developmental stage. Imperial college developed gloves that did the sa ame sort of thing but wanted $3,000 for a pair of them...enough said

ion_ion profile image
ion_ion in reply to AngloAmericanGothic

At such a price we can consider they don't exist.

ParlePark profile image
ParlePark in reply to AngloAmericanGothic

I tried the touch points. After a few days sent them back. Did not work at all. For me that is.

Good to know - will check that off the list them.

Jebbie12 profile image
Jebbie12

I think it’s more likely you will regret if you don’t go then if you do go and don’t get the job. You’ll be proud of yourself for trying. I had a goal of becoming a yoga instructor to teach others with Parkinson’s. I was nervous about making it through the training and interview for a job. But I am now certified in teaching others and have a job at my local gym. It makes me feel normal again. But yes I understand the nervousness. I also never know when my symptoms for flareup. But we have to keep living. My high school reunion is coming up and I was not going to go at first, but now I am. We need to stay social or we will get depressed and that’s not a good thing at all . I wish you the best of luck! You sound like a very intelligent person and that will come across in your interview. I’d hire you in a minute!

in reply to Jebbie12

Thank you very much for your encouragement.

KERRINGTON profile image
KERRINGTON in reply to Jebbie12

I would love a yoga instructor who had PD, any chance you live in NJ :)

Jebbie12 profile image
Jebbie12 in reply to KERRINGTON

Actually, I do! I live in Mount Laurel. How about you?

LTT0019 profile image
LTT0019

I am reading between the lines of your post and the answer to your question is in your subconscious mind because I am reading it. Your conscious mind needs to go on the interview.

OK -that is done.....

Next this might be a good time to Reflect, Refuel and Refocus. This does not mean you will be lazy you will be creating your new normal. I was diagnosed with PD in 2012. I approached this illness with the attitude that it will not beat me. The next five years I continued to progress in my career. Then symptoms of PD plus additional medical issues got worse and I had to go on disability in 2017. I am still creating and updating my new normal. It has not beaten me but it looks a lot different then my former life. I am working on saying no to "pity party of one" and to get on with my life.

Good video

youtube.com/watch?v=I5ENsv_...

in reply to LTT0019

Thank you very much.

GinnyBerry profile image
GinnyBerry

I have followed your posts in the past. You are always very thoughtful.

Your post here says so much, and I love the responses you have received.

This forum often gets questions like this — What should I do?, they ask. The writing between the lines is that they want the forum to give permission to quit. Your post is different. I hear that you want permission to proceed. Do it! Apply!

We all hear that stress is bad for our symptoms. So is lethargy, apathy, and giving up. Hope, new experiences, learning— these feelings can invigorate. Even if you don’t make it past the interview, your brain is firing!

You know your weaknesses. Other candidates are yet to be diagnosed with theirs. So, you have a tremor...they have other issues.

I’m 45, and I’m scared — 9 months ago, I was given the chance to compete for the top technical position in my company of 5000 people, which I now have. The distraction of learning something new, not focusing on f-ing Parkinson’s has been really good for me. I actually feel better. I’m not my best ever, but I’m still damn good. And I plan to tell when it’s time. (Though I am not tremor dominant; it’s easier to hide). It’s a Get Out of Jail Free card. I know if I need to do it, I can tell people what’s wrong.

All the best!

in reply to GinnyBerry

Thank you very much. Your kind words are very encouraging.

Malcomx profile image
Malcomx in reply to GinnyBerry

Great attitude, great response. We have to stay in the game and give it everything we've got. We must keep pushing and extending ourselves.

in reply to Malcomx

Thanks

Teasey profile image
Teasey in reply to GinnyBerry

I encourage you first to focus on your abilities rather than disabilities and I haven't been on an interview in decades but usually they ask you if you have any questions also. I would make your question to ask them if they are an equal opportunity place of employment and if they have ever hired a person with a disability. That could put them in a mindset to give you a chance.

This post by 'malayappan' was really memorable and moving for me as it deals with the central tragic aspect of PD - desiring to maintain a hold on a "normal" lifestyle while PD perpetually marches onwards, and normality slowly slips away (especially in situations where there are extraordinary familial financial obligations)... Now it seems like he has closed his account... I hope this is not because he went on the interview and it did not go well... Anyway I wish him peace and the wisdom to carry on in the best way that he can... He is obviously a smart and thoughtful fellow who I am sure has a lot to offer given the right opportunity...

Millbrook profile image
Millbrook in reply to

Why has Malayappan become hidden?

When someone closes their account, all of their posts remain, and their user name then shows up as "Hidden"...

ion_ion profile image
ion_ion in reply to

I do not think is very polite when someone asks for help and later on runs away. I know PD changes the people's behavior a lot. I was in that situation for few months till I settled up.

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