Concerned about rate of progression

I feel that my PD is progressing faster than what I was lead to believe is usual. The thought has occurred to me that I might have PSP instead of PD and was wondering if anyone has talked to their doctor about what distinguishes PSP from PD. Do you know of a test for PSP? I plan to ask my Neuro about it when I see him again next month but I thought I'd find out what I could in the mean time. I searched the internet and didn't come up with much and the PSP Association on this Web Site was not helpful. Maybe I'm just being paranoid but with so many of the people here being able to do things that I no longer can I can't help but wonder......AND if anyone says to me just take baby steps I'll........ well I don't know what I will do but it would not be appreciated.

43 Replies

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  • I did read that Sinemet generally does not help Parkinsonism much and for me Sinemet helps me a lot and I really feel it when I am having off time, so maybe that is my answer.

  • HI Theresa

    It is hard to get a feel for a "typical" rate of progression with PD. There will be many who progress faster than some people on here but they may rarely post - maybe they feel down about it and can't do all the things that others appear to do.

    Also, I guess people want to appear upbeat and positive so just mention things they can do rather than things they can't. I suppose this is understandable.

    There are quite a few regular posters that seem to be progressing slowly and managing symptoms well. This is encouraging on the one hand but leads to questions for others regarding vigorous exercise that they simply can't do.

  • As for me, this past year has seen changes in my symptoms. 10 months ago I ran 8 kms but now I can just about manage 1 and this may not last much longer. My left arm shakes at time but didn't last year, and now I frequently suffer from terrible fatigue (like you). I feel more unsteady than a year ago. I often feel way below par. Sometimes I think my right arm is starting to show symptoms. 15 mins of exercise is enough or else I am too tired.

    On the positive, I continue to work and keep mentally active. I can still walk and the meds help, I sometimes take 2 pills if I feel crap.

    I sometimes get down about the future with pd and that is only natural. I find working takes my mind off it and gives me a purpose. The social interaction at work helps a lot.

  • pspassociation.org.uk/infor...

    nhs.uk/conditions/Progressi...

    Diagnosis of progressive supranuclear palsy

    It can be difficult to diagnose progressive supranuclear palsy (PSP), as there’s no single test for it, and the condition can have similar symptoms to a number of others.

    There are also many possible symptoms of PSP and several different sub-types that vary slightly, making it hard to make a definitive diagnosis in the early stages of the condition.

    A diagnosis of PSP will be based on the pattern of your symptoms and by ruling out conditions that can cause similar symptoms, such as Parkinson's disease or a stroke.

    Your doctor will need to carry out assessments of your symptoms, plus other tests and scans.

    The diagnosis must be made or confirmed by a consultant with expertise in PSP. This will usually be a neurologist (specialist in conditions affecting the brain and nerves).

  • " for me Sinemet helps me a lot and I really feel it when I am having off time, so maybe that is my answer."

    You are correct,

    that is your answer

  • Not to worry, 'johnpepper' will pop up any minute now to teach you how to "REVERSE" your disease through energetic fast-walking! (sorry, bad joke... I hope you find a genuine solution soon)

  • Have you tried "energetic fast-walking"? How many people tried it and it didn't work for them? Where can I find info about negative effects of "energetic fast-walking"?

  • (Note: 'pachikov' is an anonymous/proxy account recently set up by 'johnpepper')

  • :) just google

  • Hi Theresa, I'm on a similar journey. A neuro-ophthalmologist is probably your best resource to find answers. You know your body best; it's interesting to me that you said you were progressing faster than you were lead to believe. Parkinson's can be a catch all for a number of reasons, but if we're on a fast track we deserve to know it.

  • Interesting about the suggestion of a neuro ophthalmologist. We asked for an appointment with one and they asked for records from our regular eye doctor who is himself an ophthalmologist but not a neuro ophthalmologist after reviewing the records the neuro-opthamologist says that my husband does not warrant seeing her that perhaps he needs a cornea specialist but he does not see things as he used to and he has depth perception issues and all kinds of things so I'm wondering what's going on

  • An ophthalmologist couldn't diagnose my abnormal stereopsis, a neuro does more extensive testing. I self referred. Keep looking if you haven't been given the answer you need.

  • Yes, I know uou are right. I need to continue the search. Were you able to get help with the stereopsis?

  • Nothing to be done. I'll have to stop driving if/when it worsens. It helped to know why certain things were happening.

  • SilentEchoes, etc

    I just reached that plateau myself. Although I've really tried to hold in my emotions about turning in my license for a State ID (USA), it's really been tough.

    Someone asked if we have to give up our drivers license if we have PD.

    I can only answer for myself: it was my decision. My wife, my OT, GP talked about it, but nobody told me I had to do it.

    It was suggested that I might think about it, but added to this decision, I have not been able to turn my head after I fell and fractured two vertebrae in my neck, despite extensive PT. I still can't turn my neck far enough in any direction to be safe to myself or others.

    I am very blessed that my wife is gracious and willing to take me wherever I might need to go without any complaints.

    Nonetheless, I feel like it's just one more burden that my PD has put on her. I loved driving and have always happily assumed that role.

    Even the belief that "one day" we may have cars that will drive themselves, doesn't really make it easier.

    I'll be 69 this month and diagnosed about 1 1/2 yrs ago. I had to accept that my life was in a constant state of change and it has been.

    Before my PD and breaking my neck, life was so much better I had tremors, but now I have jerking tremors.

    Just another thing that I may not like, but I still need to accept - not resign from life, but accept the changes to it.

    Thanks for listening. You are the only ones with whom I've ever actually shared my true feelings.

    -- John

  • Thank you John! It takes a lot of courage to share how you really feel. This forum is great for us, with PD, who really need to vent, and communicate with others who struggle with PD. Know that we are here for you John, and that we understand!

  • Thank you for sharing your feelings. It's therapeutic to talk about them, but sometimes we can't talk to our family about them because it's too painful. I keep some things to myself because I don't want to burden my husband, he's hurting too. I'm not very graceful when it comes to losing my independence. Wishing you all the best.

  • SilentEchoes The reason I said that is because I have a cousin just a bit younger than me that has had Parkinson's much longer than I and is much better than I as far as symptoms and though she has progressed she is doing it slower. My doctor said it could be because I'm diabetic and she is not.

  • It took my mom 20 years to develop autonomic nervous system dysfunction, it took me 2. This suggests to me that I am not dealing with simple PD. I do wish you all the best in your journey.

  • You just made the point I've been getting at. Sending healing prayers SilenEchoes.

  • Could explain it to an extent. Certainly some people have a slower moving form of pd than others but it is difficult to tell from message board posts what challenges people have if they don't disclose their symptoms. I am not saying they should, it's up to them, but it is just difficult to know where they are at. Some have symptoms that are bad enough for them to force retirement but they are still active. Others post who have partners with pd with severe symptoms who presumably can't post for themselves. There are older posts on here explaining they have severe problems after 5 years. One person I remember had DBS 2 years after diagnosis so he could keep working.

    So we can't take for granted that we will have 10,15, years of mild symptoms that cause only a minor inconvenience. For many it seems this is not the case. Parkinsons is a serious disease and time is valuable. Whilst we want to be optimistic we also need to be realistic and not assume most people go for 15 years in the slow lane. Someone diagnosed at 70 will be 85 in 15 years time, a good age by any standards, someone who is 48 will be 63. My sympathy is more with the younger person.

    Whatever the future, we have to get the most out of each day. It is natural to think about the future, a habit of a lifetime, but in relation to pd it is wasted. This is where pd is both a physical and mental challenge. Doctors rarely talk about it or refer pd patients for psychological help - everyone needs it. The message board has many people worried about which lane they are in, how long they have before being incapacitated, the impact on their family, etc. In a sense they are looking for insights on how to cope mentally. If we thought for example we had 4 reasonable years left how would we use them?

  • ditto:"worried about which lane they are in, how long they have before being incapacitated, the impact on their family, etc."

  • When diagnosed with pd it is likely we don't know what we are diagnosed with, and as we learn more we find out what may be in store. It is crap to say the least. However it depends what you put it against. It is better than a terminal illness with a few months to live, although constantly changing symptoms play mind games and create doubts. Do PD people ever really come to terms with it? Maybe some more than others.

    What do we like to do with your time? Do we like to chat with friends, have a coffee and read the news, help with a cause, work and make a difference, travel if health permits? As PWP generally never feel the same again it is hard to put it to one side but it can be done if we are immersed in a task. A challenge that many people with health and age issues face is finding a purpose and avoiding boredom. If we had a few months to live we would have to let go of everything, no use worrying. But we all have a finite amount of time left. We have pd but could die in an accident today, get cancer tomorrow, heart attack the day after (not in that order). I am not suggesting we become fatalistic but we have all become conditioned to thinking we have a right to live until we are 95 and it is a shock when pd enters and we face the fact we are mortal.

  • "death by a thousand cuts"

  • Wise Words Ozie.

  • Theresa.

    Sorry to hear of your challenges. A while back you wrote of a switch your insurance company made in your diabetes meds. If I recall correctly you notice that the PD symptoms worsened when the switch was made from Victoza/liraglutide. (which i believe is being trialed for PD this yr, if not already.)

    Were you ever able to go back on the Victoza?

  • WOW it is amazing that you remember that Motal. Yes I was able to get back on Victoza after working on it for awhile. It turned out it wasn't my insurance company at all it was that the Doctor's office was not filling out the history that they insurance company needed to authorize it. I told my doctor I really liked him but his staff makes my life difficult and I switched back to a doctor that I had before him that had moved away. It is a little bit further travel to get to her but I haven't had any prescription problems since I made the switch.

    According to my Neuro at the Research Hospital I go to, the trials on Victoza have ended and the results are inconclusive. However I'm keeping to the Victoza anyway because I'm able to keep my diabetes regulated with it.

  • Theresa. I've been following the diabetes-drugs-possibilities-for-PD for awhile -- just a gut thing (no pun intended) --- so your account stood out when I read it.

    If you don't mind, another question: do you take Azilect?

    I've been on it for 2 yrs and circa late Feb the refill came in the generic form cos the patent on the brand name had just run out. So I took the generic version -called rasageline- and within a couple of wks, noticed that the carbidopa/levodopa was wearing off sooner and i was feeling way creaky.

    Two wks ago on my 6-month check-in with my neurologist, she suggested we troubleshoot the wearoff by going back on the brand-name Azilect. Which I;ve done. I do feel better.

    (The cost of this drug post-patent is worthy of a separate post, but for now i just offer this in the event Azilect or rasegeline were a factor for you...)

    -M

  • Thank you Motal for your concern. Yes I do take Azilect and I'm taking the name brand. I have excellent insurance right now and have no co-pay with it.

  • Glad of that glimmer of good news of your insurance. Hope you can find what's up.

  • i can understand what you are going through. the last four months have been so stressful for me, and the result is that my symptoms have really intensified and i worry about losing the abilities i do have. i am going to see my neurologist tomorrow, and will plan on spending a long time with her. but at the end of our visit, she will remind me that pd is chronic and degenerative...i feel for you:(

  • And I feel for you also Carolinagirl.

  • Have you lost your sense of smell? PSP people don't usually loose this, and falling over is an early symptom of PSP whereas in PD it is a much later development.

  • Jeeves that is something I didn't know. Yes I did loose my sense of smell for years, however being on Sinemet I have it back and it is so pleasant to be able to smell spring again. It has been many years and I'm enjoying the Honeysuckle and the Hyacinths enormously. As for falling, I do fall and have to be careful not to rush. More and More I am thinking it is not PSP. Which is good.

  • Hello Theresa. Glad you're feeling more optimistic. Virtually all of the Parkinson Plus Nasties (PSP, CBD, MSA) keep their sense of smell and I think most Alzheimers folk do also. But benefitting from sinemet is great news too. Best wishes.

  • Jeeves1,

    I lost my sense of smell and with that, taste, years ago (maybe 10 or more years ago). But, I had no idea why that had happened. My wife knew that I used to love cooking, but now there was no enjoyment from it. Duh!

    I attributed it to medicine I might have been taking. Doctors didn't seem very interested in investigating it or even why my hands had a tremor early on.

    No! It could not be PD! My Neuro at the time attributed the tremors to familial tremors and then just wrote it off.

    Of course, I had no idea or even who to ask beyond that.

    --John

  • Hi John. Yes the smell loss was my first symptom. I was referred to an ear, nose/throat specialist who MRI'd me and said he couldn't find anything. I still can't believe a senior clinician concerned with the head isn't aware of smell loss as being a major PD symptom. I always knew all wasn't well but kept on with my life as normal. It all fell into place when my handwriting went. But I'm doing quite well at the moment. It ebbs and flows but I'm exercising hard and trying to challenge my brain accordingly. Seems to be working pretty well actually. Will stay on agonists until they don't work so well. Keep strong.

  • I feel like my Parkinson's is progressing too fast, too. I will have to talk to the Dr. about this soon.It is most disconcerting.

  • Please do talk talk to a doctor who is skilled in this area, maybe eve movement disorder, and someone you can trust.

    It's important, ddmagee1! Do it for yourself! Earlier is better.

    Do you mind if I ask your age?

    --John

  • Thanks John. I am 70. I see the neurologist this coming Monday. Thank you for being so supportive.

  • Be sure to let us know how your visit goes ddmagee.

  • Sure. Thanks for your support, Ms. Curley.

  • My Grandmother was diagnosed with PSP, and it started with frequent falls. She never had tremors and dopamine drugs were not effective to reduce her symptoms. PSP is very rare.

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