So far I've had 6 months on sick pay and soon I go down to several more on half. Then I need to reply for my Teacher's Ill Health pension. No worries other than it unnerves me that my specialist appears to have such a large and influential input. I've only met him once (the previous on retired) and when we did meet it seems a somewhat superficial appointment. Many things debar me from being able to teach: chronic fatigue, insomnia, anxiety attacks in front of classes, inability to mark pupils work, apathy, flu symptoms etc. My specialist wouldn't really know about these more subtle aspects of my situation and I always get the feeling that clinicians place too much stress on motor skills. I sort of resent that my specialist holds the key hand in a situation that I am the best judge to know what I'm, capable of, not he.
And how exactly is one meant to raise this issue with him? Do you just say 'I'm giving up work and need to know if you'll support this?' What do you do if they say 'No, I'm not.' It all seems a bit pants and unsatisfactory from the patient point of view. Any advice/experiences greatly appreciated. I'm UK based btw.
Cheers.
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jeeves19
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That is a much clearer path than in the US, where you have to go two years without income, then offer extensive proof of disability to [non-medical] civil servants while paying an attorney for advice. At least your consultant is a medical professional.
Hi Juliegrace I am just skimming the PD postings, but Jeeves posting, with your reply, caught my eye.
What you wrote was NOT the experience of my son. He worked for Los Angeles Unified School system (CA, USA) as a full credentialed math teacher. He applied for disability retirement through CalStrs the California State Teachers Retirement System. He had much paperwork to fill out. Medical documents were required. Within 2-3 months of applying, and all required paperwork supplied, it was granted.
He went from his working paycheck to his disability paycheck. No waiting period.
This was not Social Security, although later he applied and also received that. Disability does not, majority of the time, cover medical insurance and so he had to pay out of pocket to the ACA (thank you President Obama).
His symptoms started March, 2014. They became progressively worst. He applied for disability retirement late 2015 and it was granted early 2016. It was based on the neurologist's notes, his medical records, the Datscan,......that he was suffering from Parkinsonism.
Sadly, it was not Parkinson's but in January 2017, it was found to be PSP.
It was more in the context of: having a PD specialist in charge of your disability recommendation is a blessing compared to having SSA civil servants making the decision.
Yes, if you belong to a public union, municipal workers, police or fire, teachers, you'll be taken care of. All funded by taxpayers. This is NOT the experience of people who work in the private sector, where you have to fight for every small benefit to which you are entitled. and for which you have paid for many years.
Hi S70AWD, yes unions fight hard for their members, but actually it was the CALIFORNIA STATE TEACHER'S RETIREMENT FUND (PAID FOR BY STATE TAXES) that granted my son Disability.
Yes, I am sure the union fought for THOSE "disability rights" that were acquired awhile back.
I am a strong supporter of Union rights and also a strong supporter of taxes. All University of California, California State Universities, California Community Colleges, and all public School Districts in California professors and teachers and clerical help are paid for by tax money. I am very thankful for living in this state of California, having been born here, attended public schools, including UCLA. I have NEVER resented paying taxes and have always voted for them when on the ballot.
I am also a supporter of UNIVERSAL HEALTH CARE....which we don't have.
I am so sorry that you do not have access to what my son had. PD, but more so, PSP (from which my son died of May 4, 2017) is costly.
This entire discussion started because Jeeves, in the UK, a math teacher, was sharing his struggle to acquire disability funds, and so I shared my son's, also a math teacher, but in California .
You make my point exactly. In Pennsylvania, teachers are paid enormous pensions after age 55, almost equivalent to what they earned in their last year of teaching. So they collect hefty state pensions for as long as 30 to 40 years.They have Cadillac healthcare plans for which they contribute nothing. And for working 9 months a year, their teaching salaries are two to three times the wages of the average worker, many of whom today have no pensions and very meager health insurance, in many cases only catastrophic coverage . Yet these are the people who have to pay for the fat benefits given to not only teachers, but to police, firemen and all municipal workers. They know the system is unsustainable, but they want all they can get for now.
Teacher strikes are a joke. All they do is cause serious disruption in the lives of working families. The teachers have noting to lose because they have to get in their 180 days, so they lose no pay, they retain their healthcare benefits while on strike, and by PA law, they cannot be replaced. Compare these unions to a union in private industry where profits and budgets determine raises, healthcare coverage ends the day you go on strike, and you may even be replaced and lose your job. That's the risk faced by real unions. It takes guts to strike when so much is at stake. Those unions deserve our support. Tax-payer supported unions should be made illegal.
Hi, I am so sorry that you have such a low opinion of the work that teacher's do, and for that matter, the government employees that you site, regarding the benefits they receive. To qualify for health insurance and the Cadillac pension that you describe, you must work 33+ years in teaching. In Calif a teacher is lucky to retire at age 65.....their pension is based on the years of teaching.
I believe that we all, no matter our occupation work hard for what we earn.
In California the rules are quite different than what you relate they are in Penn. My son had a BA from UCLA, an LLD from UC Berkeley (also passed the Calif Bar), passed the Calif CPA, had a full secondary Math credential. After acquiring that education, he worked 10 years for LAUSD and if he hadn't have qualified for CalStrs Disability his pension would have been less than $1000 a month, before taxes. I might mention that in Calif, teachers contribute to their pension. When a person retires the state first uses what the person has contributed before dipping into additional tax money. My son died before he would have used up his contributions for his pension, and it just goes back to the general fund. BTW, disability did NOT pay for my son's health plan. We had to buy that from the ACA, often called ObamaCare.
Teaching jobs are for sale to the highest bidder in PA. or to relative of school board members. All you need is a BA, and then 3 continuing ed credits in the next several years. These credits can be earned by attending a one day seminar, etc. Some very good teachers work in this system, but there are a lot of bad ones too. And the new teachers who start off with such passion and enthusiasm soon succumb to the lackadaisical who-cares attitude of the older teachers.
Please stop using this forum to vent your frustration regarding a profession that you probably have little contextual experience of. If this is difficult for you to do I reccommend a cold shower or meditation.
I must reply to this. Are you sure you know what you are talking about? I am also a Math Teacher. Money comes out of our pay check for our pension and as a benefit, is matched by our employer (the government). When reporters write that teachers have full pensions, this does not correspond to equivalent pay to what they earned. It just means they have maxed their pension out and they can retire if they want. I retired at 57 because of PD after 33 years of teaching. I live on HALF of what I could earn if I was still teaching. The money that I put into the pension plan and the money the government put in is then run like a plan. In fact where I am from, the teacher’s run it for themselves (because there had been in the past some hanky-panky with the money when the government ran it) and our pension is from that fund. If you notice, the 57 (my age) plus the 33 (years of service) adds to 90. That is the magical number that allows you to retire with a “full pension” not a full salary. I earn half what I did. If you also do the math, 57 minus 33, means I started teaching at 24 ( actually 23), I lost a year by having kids. AND DO NOT GET ME STARTED ABOUT THE JOB, WORKING 9 TO 3 AND ONLY “9 MONTHS”. Have you ever given a presentation? How long do you prep for a 10 minute talk, a 20 minute talk, a 30 minute talk ????? WALK IN MY SHOES! I am the manager of 200 teenagers and am responsible for teaching them something new every day. With 1000’s of questions a day, AND, AND, AND, AND!!!!!!!!
Times have changed here in the U.K. since the financial crash. The formerly supportive agencies have been told to make life difficult for and disabled person as a way to save money. Of course the real culprits of the era remain unpunished.
My son died May 4, 2017 (barely 55 years of age). He chose to stop being fed thro his PEG, as the five weeks following it's installation he rapidly deteriorated. The PEG was installed after his 2nd bout of aspiration (with sepsis) pneumonia (March, 2017). Before that 2nd bout of pneumonia he was doing so well.
Good luck with your disability retirement application. I know that when my son stopped working his symptoms improved. STRESS is not a friend.
How VERY kind of you to ask. It has been a little over 14 months. The first 12 months were beyond difficult....during that year I joined two Grief groups. One secular, thro the hospice, and the other thro my church. My health fell apart (pains in all my joints, sciatica, tummy) and also dealt with tons of guilt ("I should have", "why didnt' I", etc). About a month ago I turned the corner....still get grief attacks but not daily or weekly, and can now see and accept that he is NOT suffering. He was a wonderful son and I am grateful that he was MY son for 55 years. I am 77 years old.
I was the caretaker for my dad, but he was 92 when he died and his death was not one of HORRIBLE suffering. My son endured a great deal.
For me, maybe not for others, it gives me solace that PSP be genetically/mutantly based....not a virus that came to visit, or pesticides, etc. My son did all, and more, when he thought he had PD (for three years)....exercising, supplements, etc.
Yes, sometimes I wonder if my husband has something other than Parkinson's, or perhaps even as well as Parkinson's. He's only ever had 1 brain scan 13 years ago when first diagnosed at age 51. As we live in the UK, the NHS is not keen to do scans without good reason due to the cost.
Glad to hear that you now seem to have turned a corner in dealing with your grief.
Thanks Jeeves, but I was thinking more along the lines of something like Ataxia or MSA as he's always had the most unusual gait. He also suffers with osteoarthritis & has had both knee joints replaced. Currently suffering with spinal stenosis & sciatica so he's in a lot of pain (on morphine) whilst awaiting an appointment on the NHS to see the back specialist in September 🙁
Hi , my husband was a head teacher and he took I’ll health retirement 4 years ago . He had his forms completed by the Parkinson’s nurse and the chair of Gov at his school. It didn’t make easy reading so be prepared to see things in print that you now cannot do ☹️he hadn’t seen a consultant for a few years . Do you have the support of your headteacher? Are you looking for total incapacity or just retirement with out reductions? I believe the second type is easier to get but neither are very easy to get in teaching any more . I still have all the paperwork somewhere if you want to know the type of things that were said? Personally I would be very up front with the consultant and say I cannot do justice to my job any more will you support me - you’ve nothing to loose . 😀
I suggest making another appointment with your neurologist, being specific and detailed about the difficulties you now have teaching - changes in cognition, marking and assessing students’ work, fatigue, etc. Once you are confident that he has got that noted down, ask him to write you a detailed letter for your disability insurance. That should hopefully be sufficient to get your request approved. If you’re still worried, ask your family doc to write a letter as well. Two letters are better than one!
In my case, when I said” I think it’s better that I stopped teaching now”, my neurologist said, in his casual way,
“Won’t you be bored? “ He said that he could write me a great letter specifying how bad this disease can be. (He was a bit too honest at times...).
I realize that you are in a different country, so things might work differently there, but hopefully it is similar to the way things work in Canada. Best of luck!
Good luck with all this, Jeeves! I know it's very stressful. I just picked up the form from my neurologist this morning that he filled out for me stating that I could not work, that Parkinson's was progressive and that it would last my lifetime. Without this I would not have Medi-Cal insurance and I cannot afford to pay the bills on my own so I was a little nervous about the whole thing. I have non-tremor dominant PD and people tell me I look fine, but boy, I don't feel fine. As you said, this is so much more than just a movement disorder!
The reason I asked about driving is with regard to some doctors, who the minute they hear the reasons why you can't continue work, want you to stop driving. I have found that one poorly trained doctor, who makes decisions based on just preconceived notions re a patient, can cause great stress.
If you get vibes that your doctor wouldn't go along with you, then you have to really impress upon him how miserable you feel, and how difficult it is getting through a day. i worry if he is detached wd he then say, ok you can retire, but also I don't think I want you driving since you say you're so sick.
Can you find a more knowledgeable, patient oriented doctor ?
Make notes so you can refer to the issues you have. Don't count on being able to remember important details when you are under stress. You have to let him know about your limitations or he may not be aware and be able to make an informed recommendation in your favor.
I have been wondering how you are going, you have been quiet. I once sent an email to my Neurologist saying what I had to say, he then rang me and I later went to see him. Writing the email gave me time to think about all I wanted him to know and how I felt. I feel intimidated sitting in the office sometimes and couldn't express myself as well as when I am writing. I wish you well.
I've been taking 2000mg per day for the last 3 weeks. I will see how I go, so far no improvement but my symptoms are slight. I'm still reading You Are the Placebo. My mantra is "I am making new cells, I am making new connections, I am making Dopamine". Mind over matter. Costs me nothing and I had a mantra years ago that has worked, except for the PD.
Since you are reading the Joe Dispenza book, start doing the meditations. That is the key. You may have read in the book about the woman who "cured" her PD. We have been to one of Dr. Joe's workshops and spoken with him. He has had several people relieve their PD symptoms through his meditations. He recently wrote of someone else in one of his workshops who had done so. Good luck.
Hi Eliza-Jane - I also tend to fall asleep and then abruptly awake right at the end. I do find that when I am consistent in doing Dr. Joe's meditations (and they are different from most any others I've tried), I am a much more peaceful person and have less pain. Sadly, my husband, the PwP, can't do the meditations (we have several of the CDs) because he can't hear Dr. Joe's voice above the music. It's a bummer.
Not quite the same Jeeves, but I was a self-employed Contact lens Optician with my own practice here in Yorkshire. I found I couldn't work and was unable to sell the business, long story short, I lost all my savings and pensions bar a token frozen one.
I have had to go cap in hand to the state for ESA and PIP. I've been assessed by a physio and two characters who were 'supposedly' doctors though my own meagre medical knowledge appeared to surpass theirs.
On both occasions I filled out my GP and Neuro's details on forms...….and that is all. I also did the same for the token bit of pension I found I could access. In no instance did I speak to a GP or Neuro, it's a case of if they want more info they'll go direct, don't worry my friend they'll do it without your input, (I was so anxious/upset being assessed I was Uber-Parky on those days of assessment...…...so there was no doubt I couldn't work)
fill out the paperwork and see what happens.
By the way you should also be entitled to PIP (personal independence payment) which is designed to help such as ourselves and is 'not' means tested.
Ha! The fascists turned my PIP down. I’m appealing but I loathe Capita and all its operatives. They just lie and choose to ignore all of the information that you offer them. They’re politically driven and this feature is a stain on our society’s image and civility. Rant over!
Private eye refer to them as Crapita and I think they are a loathsome organisation. Do you think you will be able to do private tutoring going forward?
Eventually Alex but if you do get the full pension you’re not allowed to do any work at all or you have your pension taken off you! You’re not even allowed to do a half days volunteering as this is deemed to be suggestive that you are fit for work. I think that these restrictions end when you reach normal pension age.
Write a report on your situation covering the detail you mentioned in your opening remarks to this forum and address it to your specialist. But don't post it, take it with you to your next consultation and hand it to the consultant with a brief comment about wanting to make sure that he received all the information available. I've done it a couple of times myself with cardiologists and got taken very seriously as a result. Specialists seem to respond positively to the written word because it creates a record from your point of view. Otherwise they can say and do what they like without any comeback from you. Something they seem to realize. I live in New Zealand btw and our medical profession is not unlike your own. All the very best with this my friend. Regards - Robson
No, at the other end of the country. Auckland. But my wife and family and I used to holiday in Queenstown when we lived in Invercargill - many long years ago.
Hello jeeves19, I've been wondering how you are doing. I haven't seen a posting from you in a while, so thanks for keeping us up to date. It's amazing, but I feel exactly how you feel about clinicians, seemingly! As long as the Sinemet takes care of the worst of the motor skills, then I think my clinician seems to think I'm fine. He is very professorial in his manner and attitude. The subtler aspects that I have to deal with, seem to be overlooked, or brushed aside when I attempt to discuss them. It is difficult when you know that the specialist determines your disability and ability to work status. Apathy has become a big problem for me. I used to be very sociable and outgoing, and now, I really don't seem to care to go out much, in social situations. Chronic fatigue and insomnia plagues me. I have anemia, which doesn't help that. Anxiety attacks have bothered me, when I've pushed myself to get in front of people and speak. I used to do a lot of speaking and theatre work, but I just can't seem to do it now. I am the best judge of that, and how does one explain that to the specialist, especially one who seems to emphasize mainly motor skills. Of course, speaking publicly does involve the vocal chords, which can be affected by PD. In my case, they have been, and, at times, I have trouble with swallowing, so I have been diagnosed with dysphagia. I live in the USA, so determination of disability is a bit of a different process, than what you have in the UK. Do you have a problem with microphagia, too? Also, do you have a movement disorders specialist that has seen you before, or is it this one specialist that has only seen you once? Having the backing of a known specialist, that you receive medicine from, and that you have seen regularly, can make a big difference, here in the USA, when it comes to the determination of disability. Just seeing a person once, doesn't seem to me to be able to provide a complete clinical assessment of a patient with PD. Symptoms and signs fluctuate with PD. One needs to evaluate a known history of neurological signs and symptoms, in order to come to a conclusion of disability, and amount of disability, from what I know about how it is determined here in the USA. Also, accomodations can sometimes be made for partial disability. Since PD is a progressive disease, I would hope that the Teachers Ill Health Pension determiners would take that into account. Also, since you've already been out six months, because of this, that should work in your favor. I have taught privately over the years, and understand some of the aspects of teaching. With the diagnosis of PD and the problems you are having, that you mentioned, I would think that you should be awarded a pension. If the answer were to be no, could you appeal that decision? Please keep us informed, and may the odds be ever in your favor, sir!
Blimey DD that was one hell of a response my man. What did you have for breakfast today?! You’re right I don’t post so much these days. I think a degree of stabilisation thankfully added to a growing awareness that too much information can at times cause you to act like a dog chasing its own tail has made me calmer as a PWP. Gurus often say that spiritually the answers are inside us and essentially the key to PD is daily simple: sleep, exercise, good diet, meditation, family and a good dose of B1 maybe. I think that if you carry these out carefully and frequently one’ll find less need to be searching for solutions. But I’m sure I’ll be suffering in a fortnights time and will then reappear as a scab enter of ideas! But nice to hear from you. Stay strong friend 😎
Hi jeeves19! I like your reply! I had Wheaties, the breakfast of Champions!! I care about my fellow PD sufferers, and feel very strongly that only if one actually has this ailment, can one really understand fully what another person with PD is going through. If I can somehow help a person with PD, I'm glad to be there for them! I agree, too much information can cause one to feel overwhelmed, at times. Your key to PD is well expressed. Stay strong to you, also, friend! Keep me posted on how you are doing. 😁
Hi jeeves19. I can't imagine any specialist will dispute that PD symtoms will at some point get to much for anyone doing a teaching job. You have had to come to terms with it yourself so it won't need much effort to convince him. You could look to do something less people facing when you're ready.
Surprised you say that your consultant "... wouldn't really know about these more subtle aspects of my situation". S/he will know everything about your PD difficulties if you Relate them. It's up to you to make best use of your appointments and describe all health problems as they arise. No-one else will do this for you. Sharing the full picture now should help with the occupational pension application in due course.
Really sorry to hear about the increasing challenges at the workplace. As you know, good health depends on good sleep - and good sleep depends on good health. Since numerous deficiencies in minerals, nutrients, and hormones start occurring in our late 20s to early 30s, it's wise to do an annual 'complete blood/urine panel' in order to test for, then address, these common deficiencies (if you're not already doing this). Optimum health depends on maintaining this 'balance'.
Melatonin is one of those common, ever-increasing deficiencies. If it's not already part of your pre-bedtime routine, consider adding a 10 mg time-released tab, along with 200 mg of l-theanine, an hour or so before bed. Tips for sound sleep: youtube.com/watch?v=ZKNQ6gs...
Hi there my friends , I’m really sorry for all the difficulties but I do understand . I am in Sacramento California and have been with a school district for 22 years and understand about your 33 15 year old. Mine happen to be 5-6 year olds, I’ve had PD for 5 years now and did not tell anyone st work for the first couple of years out of fear . Thinking they would not think I could do my job. I was wrong they have been very supportive but is also scary as things progress. My PD specialist is quite extraordinary and supportive , so I’m hoping when I get to the point of feeling I need to off work perminately he would help. All of your comments have been very informative and helpful. I hope everything works out for you. Regards
Surprise...I AM a certified teacher. But I am also a compassionate and understanding person who realizes that we cannot keep squeezing more and more from those middle and lower middle income taxpayers whose taxes support all public unions (not just teachers) while we enjoy an upper middle class lifestyle with good healthcare and generous pensions, while in private industry even those with a good education struggle week to week, have little in the way of health insurance and no pensions. I also have PD and have had to make the painful decision to retire at now, at age 68. I am grateful that I will be able to manage well enough to be able to contribute time and money to the free health clinics and food banks run by the local churches. But many areas of Pennsylvania outside of the cities of Pittsburgh and Philadelphia have few resources for dealing with PD, and our state government is not particularly focused on financing this issue, so the fact that taxpayers have to pay very high taxes to support this segment of the population is relevant to what they have left to provide for their family's healthcare. I don't believe that anyone who lives in the UK and has the benefits they have (even thought they make you jump through hoops to get what you are entitled to) can really understand that as far as healthcare goes, in the US you are on your own, with little assistance from the federal or state government. My husband was a union worker all his life, but in private industry -and that is a world apart from public unions. The PSEA (PA State Education Association , i.e., the teachers union) is the richest and most powerful union in the state. I have no experience with other states, but in Pennsylvania, the teachers, police, firemen and other government workers are bankrupting the citizens who support them. I do respect what they do but they in turn should respect the condition of the hard-working but less fortunate population and be just a little less greedy.
I had hoped to work to age 70 to save more money for retirement and to increase my social security, but the PD crushed that plan. I did not work in the public school system and therefore was not covered by the generous benefits paid to government employees. I had a few short term positions for a few years and then worked for one employer for 42 years. I realized my memory and cognition were not what they used to be, and the tremors where getting harder and harder to control and the steps more difficult to manage, so I sadly said good--bye.
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