At my wits end, literally

I have had two Datscan tests which both confirm Parkinsonism. I have frequent falls, have barium swallow test confirming need for thickening food and drink due to swallowing problems and when I develop a sinus drip I have syncope (brief fainting spells due to choking and coughing 15 to 20 times a day. I do have lung scarring due to aspiration, but at this point no pneumonia. However, diagnosed restrictive lung diseases is rapidly progressing due to neurological malfunction. My neuro eye exams show jerking and slow movement and vertical movement restrictions.

Of course all of this point to PSP, according to docs, but not the classic Richardson Steele description of 1989 or whatever date.

My biggest concern is my cognitive problems, and my biggest problem is they aren't obvious to outside observers. I can carry on a conversation although I have to take time to find a word and my speech is mumbling. Before this I was a well known public speaker writer.

Now my personality has changed and I get in frequent fights with my wife because she thinks I jealous while I think she has separated her life from my life. I am on disability and stay at home alone

I am in a constant fog ( can't formulate thoughts),find it very difficult to begin a task.

I do everything I can to stay active and even have spoke at 12 different Parkinson support groups in the last year. I can only do that by spending days in preparation and voice exercises But do what I can to live beyond my limitations (what my talks are about) I have been a type 1 diabetic since 1963 and from that was blind for three years and was on dialysis and got a kidney transplant. Therefore, I know what it is to face adversity and move on, but this isn't physical alone, it is cognitive.

But haven't got to the point. the world I live in is fog and all the cognitive problems associated with PSP, but I live there alone. Things are rapidly worsening physically and cognitively but choking and lung function and falling at home alone and the emotional changes aren't apparent... I live there alone.

I'm not looking for answer or "do this" cause I done all I've been told to do.

I am merely attempting to express out loud what I haven't bee able to say before but held inside.

Thank you

19 Replies

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  • You are never alone once you join this group. You have the attention, support and empathy of many people -- some who may be within a mile or two, some across the world. I have no business advising you since I haven't experienced much of what you have. Plus, as you say, you're not looking for that. But I, and this group, can provide friendship.

  • Two Thoughts...

    One. Help somebody

    Two. Be Grateful

    FJohnt

  • Yes, that is why I speak at a state Parkinson Resource groups and get call for additional support Sometimes you help others, but sometimes you ask for help even if that help is a ear that listens

  • Thank you

  • I meant to reply thank you

  • It is a very lonely disease. My husband was diagnosed last year and never had been able to express himself very well, he also has aspergers. Now he is closing himself down, doesn't seem to be able to talk to me. Psychiatrist has made things worse by diagnosing 'mild depression' I can't think what on earth she heard when she assessed him? It certainly wasn't the PTSD he described nor the loss of will to go on and how he desperately needs help from someone! The fact he doesn't show emotions visually through his body language worsened by the PD seems to have been ignored. His words did have been enough. To hear someone talking in third person in a controlled way about feeling so desperate is surely one for red alerts?

    The nurse has looked only at the easy medical bits to help with and avoided any form of counseling support. She even wrote a name of an anti depressant so he could take it to his GP whom she clearly believes is incapable of knowing anything about anti depressants...I don't think. The GP was not impressed as it was not one that would be appropriate anyway and the one she prescribed has helped.

    Anyway, I'm ranting and my point is that yes I understand how lonely it can be. I was a registered nurse and nursed many with PD along the way, yet I never knew just how isolating this disease is. Friends pull long faces and speak behind their hands about someone they know/knew with PD and isn't it terrible. But for both my husband and myself it's not the tremor nor the small steps that are most difficult. It is the way he becomes unable to cope with the fear excaerbated by the lack of seratonin and support to help us understand the future that is the worst. Being how he is and also having PD means that he cannot easily see a positive way forward. Where is the support we both need? It's not with the busy busy PD nurse who sends to be ticking boxes and completing lots of referrals. It's not from the consultant who said the nurse will visit and support both of us. It's not from the mental health team who are overrun with work and can just push this one side as a physical disease. Not from friends as they cannot help him any more than I can and I don't have any real friends here yet as recently moved home. Not from family as no way can we burden them not tell them the real truth.

    Yes it's isolating.

  • Change neurosurgeon(NZ)

  • It helps to know that - despite the number of problems that arise as our condition progresses - there are ALWAYS others who have it worse yet still endure. I must add that the referred cognitive issues are tough to detect - you still seem very articulate in your communication here!

  • God bless you!!!!!

  • i am with you fully

  • Btuma6

    I am moved beyond words at what you write and i see both generosity and gratitude in it and the need for what we all need at some time, some one to just listen and understand. I suspect that is what you are asking for from your wife - to be there for you.

    If you ever start blogging do post the link on here.

    Some PD people take rivastigmine. Don't know how helpful it is for brain fog.

    (There is also a PSP forum on here.)

  • I 2nd Beckey's reply to your post. We are here to not just answer questions but listen to each other's difficulties in dealing with our disease. It's a scary rough road that we are going through but I take comfort in knowing that I can talk and share my everyday limitations and problems with this group. After all it is a SUPPORT group and we are there for you.

  • Thanks and I also tired to thank Beckey

  • We hear you, you won't be suffering in silence any more.

  • Husband had much success with Concerta for brain fog. Neuro Psychiatrist recommended. Hard to get Neurologists to focus on cognitive issues that are not apparent in a short visit. You are very articulate so things may be better than you realize.

  • For further clarification of the PSP scenario I'll copying a portion of an article appearing in "Neurodegenerative Disease Management" Dec 2016 'Managing Cognitive Problems in PSP"

    In parallel with this impulsive behavior is an almost universal loss of motivation and apathy [21] that reflects atrophy in medial frontal regions and insular cortex [36]. People with PSP tend not to initiate activities or conversations. This can be a source of frustration for families who may wish to keep their relative ‘active’ to preserve motor function, and can impair compliance with therapeutic interventions such as physiotherapy or speech exercises. In other neurodegenerative diseases apathy has been associated with increased carer distress [37–39], more rapid disease progression [40] and poorer prognosis. Reports of apathetic behavior from carers may be due to other factors. For example physical disability in PSP may lead to reduced spontaneous movement and goal directed behavior; facial hypomimia may be mistaken for lack of interest. Similarly, apathy may be mistaken for depression which may explain the marked differences between studies in the estimated rates of depression in PSP, ranging from 16% [21] to 56% [41]. However, while apathy and depression may coexist, they are distinct neuropsychological constructs [42]. Many apathetic patients will describe their own mood as good or happy and assert that they do still enjoy things. This contrasts with the perception of a lack of motivation and enjoyment observed by others. In our experience depression per se is relatively uncommon in PSP while apathy in the absence of persistent low mood is present in the majority of cases

  • Btuma6, I didn't know what PSP was so I looked it up. I am now going on the assumption that it stands for progressive supranuclear palsy.

    I think you'll find most of the people on this forum to be compassionate and caring. You don't have to do this thing alone.

    I will mention some things that have helped me do self-soothing since I was diagnosed with PD five years ago:

    1) When my medication begins to wear off, I sit down in a comfortable chair and take the next dose. While I'm waiting for it to take effect, I do a facial and scalp massage. I've been doing this massage several times a day for about 4 years. I think I've literally trained a part of my nervous system to immediately relax as soon as I touch certain points on my face. It doesn't change the fact that some muscles are twitching and getting rigid, but there is another part of my nervous system that it does affect. My breathing gets deeper, slower, and calmer. The anxiety that I used to have doesn't appear. And, I think it helps the dose of medication take effect sooner. In other words, it doesn't change the fact that I have PD, but it does change my reactions to the PD symptoms - which is powerful. (The book that I learned the facial massage from is Facial Reflexology: A Self-Care Manual, by Marie-France Muller.)

    2) My belief is God and the Bible have kept me from panicking many times. I tell myself that I don't have to do this PD thing alone; that I belong to God for now and for eternity; and that it is a privilege to belong to Him. Of course I have doubts, as I think most people would admit to if they were being completely honest. However, based upon my experiences and the experiences of others, I choose to believe and have faith. Also, ticking off the things that I am grateful to God for is a big help in lifting me out of the apathy. I think it must give me a brain surge of seretonin, endorphins, or something similar. Getting out in the sunshine helps, too.

    Btuma6, you truly are not alone. You may have more help than you know.

  • I have been diagnosed with Parkinsons for 9 yrs

    I have been alone thru my PD journey my husband is in denial & is ashamed to be seen with me in public

    Most of my friends can't cope with illnesses

    My family r distant since my disagnosis

    It is very difficult to be with me due to my rigid time schedule of Meds & food

    I exercise by myself

    My best friend is my alert dog who came into my life 8 yrs ago

    We have unconditional luv for each other

    I have just finished reading a book called Brain Storms which gives u a view of alternative ways of accomplishing "normal stuff"

    I think PD is an individual journey for everyone

    Not wanting to advise

    Just letting u know how lonely PD life can be

    Thanks this is my PD journey

  • But no matter how hard my journey is I will NEVER give up HOPE

    No matter how many times I have the rug pulled out from under me

    I unlike heartsong while I wait for my next med to kick in I walk along our beach with my best friend (my dog) singing as loud as I possibly can to whatever song comes thru my head phones

    We can clock up some days quite a few kilometres

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