I have been reading many posts on here, but I haven't been responding much. Sis has really declined in the past few months. She had occasion to meet a locum who suggested that if she couldn't snap out of her depression, that maybe assisted suicide would be the best option. She'd never seen this physician before (and hopefully will never see her again). Now, she is obsessed with dying. She talks about donating her organs before it's too late, and what a burden she has become...ever since the visit with this physician.
So she is also seeing a naturopath, and wondering if it is worth her while, and keeps asking me what my opinion is....honestly, I think this person is just taking her money. (Although I haven't said that to her). Does anyone on the forum have any input on naturopaths?? Also, she says her legs (from the knees down) and feet are always burning. Does anyone have any information on this or any suggestions. I suggested ice packs?? She says standing up helps some. She is finding that sitting she gets very stiff after a short period of time.
I don't post often (as many of you know :)); I so appreciate all the comments and help. There really isn't a forum like this anywhere else in the world that I am aware of; where there is so much knowledge about PSP. You do seem to be so far ahead of the game in the UK. I don't know of any groups in Canada. I just want to reiterate how much I appreciate the thoughtful responses that I receive.
Thanks so much and sending hugs to all!
Adrianna
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Hi adrianna60, sounds like a rough time for you and your sister. I don't know about most of the issues you mention, never heard of a neuropath, but I have come across burning legs. My Dad has MS and sufferers from it, we are in the UK and he gets some tablets that help relieve them. I think they were originally designed as antidepressants but as a side effect they solve the burning legs problem, he has had to change them a couple of times as they stopped working, but there were more to try. Maybe you can get something sorted for your Sister.
Although you are not ready to hear about end of life, as you live somewhere where assisted suicide is legal, maybe give your Sister the chance to talk about it. It is worth planning ahead anyway, whatever the outcome as your Sister's ability to communicate will deteriorate and it will be better to know her preferences. My Mum is a few years down her PSP journey and her voice is softer, her ability to find words is decreasing and she tires easily, so we are going to have a session over the Easter period and get her choices recorded, she already has a DNR and has said she wants to donate her brain to research. Not an easy conversation but important to know what she wants while we can find out. Julie
Thank you for your input, Julie. I do think it is a good discussion to have; it was the manner in which it was done by the locum. I do know that she is thinking about her various options. We will support her in whatever decision she makes....
Hi Adrianna, would be inclined to report that locum! What an uncaring person! I would expect such advice to be put much more gently.
There are folk on this site that live in Canada and I know they will be in touch soon. This site is very supportive and you will get an answer.
You probably need to talk with your sister about her end of life wishes while she is able to think clearly. Donation of her brain may help researchers to greater understand this illness, but the donation needs to be organized before death so that harvesting is correctly done. And it is a very difficult topic to discuss. However it may not be so difficult since your sister is already thinking along those lines.
There may be an opportunity for her to donate other organs and putting plans in place may relieve her of some stress by getting her wishes put in writing.
Depression is not uncommon in these circumstances. Once she has made her plans, the doctor can prescribe something to help her depression. Your concern, love and care will also help.
She may have found a sympathetic and caring person in the neuropath (or is it a naturopath?). I agree her scripts may not help, but sis may feel better after talking to her.
Give her your loving understanding and help her to find a peaceful solution to her pain and suffering.
There is plenty of hands-on expertise here that can help both of you on this journey.
Thank you so much Jen. There has been very little offered in the way of respite, mental health support etc. We are working on putting those supports in place, and I hope that helps a little. It doesn't help that so many medico's don't know anything about PSP. There needs to be a lot more compassion, understanding and listening on that end...
Sorry to hear about your sisters depression. Can you see about getting her on an anti-depressant? My mom is on one and it does help. As difficult as it is, I keep a positive face with my mother. My goal is to love her and comfort her. Suicide is just plain wrong, I don’t care if it’s ‘legal’. Working with caring for my mom, with all its struggles, hardships and messiness has taught me how fragile and sacred life is. I am sorry this locum said this to your sister. I recently lost my dear brother, and unfortunately the last year of his life was full of anguish and worry because of a callus Doctor who totally lacked any type of empathy and tact. I regret and resent every second of worry and unhappiness my brother experienced due to that Doctors cold manner. Just love your sister and remind her continually she is loved .
I am so sorry to hear about your brother Jaeffbee. The loss of a sibling, I think is so, so difficult. We can never understand another's loss until that path becomes our own. I often wonder if these professionals realize how much their words can hurt?? The locum certainly opened Pandora's Box and not in a good way. Love is everything. I am sure your brother knew how much you loved him. Take care and sending hugs to you...
Welcome - There are quite a few Canadians here - So you may well get good local info from them.
So sorry to hear about your Sister. Your post is so typical of many here, including mine. Worries about symptoms and what best to do the occasional unhelpful, or unpleasant medic or nurse and plenty of worry and struggle to try and make things work. So you are walking a well warn road and can expect plenty of support here from others walking the same path.
Naturopathy in Canada is generally about 50% Homeopathy. There have been a steady flow of studies looking for evidence of effectiveness in Homeopathy and the results are steadily saying that it generally is no better than placebo rates of improvement
This might be useful reading for you - Its Canadian:
I have a very open mind to alternative medicine. I am only where I am now because of Acupuncture, but I am also aware that there is much out there which is wishful thinking and marketing. So I always follow a simple rule. If after one month there are no signs of improvement stop the treatment. If then the condition deteriorates try re-starting it to see if that stabilises things.
As for depression - I think it highly natural to have low mood with this diagnosis. Personally I would have a holiday from the naturopath and spend the money on some humanistic (type) counselling. Just a thought.
I can see you have some good replies - so I won't bang on.
I would say that if you have that doctor again take his name and place of employment and immediately write down what he said and report him to whatever registration board you have there. If he's doing this to your Sister he is doing it to others and he so needs correcting.
In Cana da you must be competent and terminal that's all.
Where are You?
Our DR WAS VERY SYMPATHETIC , the patient must request it, and then you are asssessed by two medical people who are very very understanding and sympathetic.
My fear before we knew about this was he may have asked me to give him a bunch of his pills he could not open the bottles himself,
I live in the U.K. The last poll I saw showed 85% in favour of introducing MAiD here.
However the politicians seem frightened of going down that route or, someone like the Church is leaning on them.
There are many here who believe that its wrong to shorten life. I have to respect that too.
Gosh yes - I couldn't do something like give Liz a bunch of pills either. I would add that I used to have quite a bit of involvement with case where people have tried to take their own life. It is actually quit difficult to achieve. Most often people survive in a much disabled manner.
It was brave for both of you and I am so sorry for your loss.
Oh thank you Mandy for your response. Sis is not there there. I don't know what she will decide. I just know I will support her in whatever decision she decides to make. Right now she just feels that she has no purpose in life....it's so, so sad.
Your journey must have been one of courage and strength...
I have sent that locum a letter asking her to put herself in sis's shoes if only for a moment, and then think about the effect that her words had on my beloved sister. I have started to look into alternative therapies, such as palliative massage, hospice services, etc. Her decline has been much quicker than we expected. It's just so damn sad.....one truly wished they had magical powers to send this disease off to a faraway place never to been seen or heard from again.
I read many of your very thoughtful and insightful posts, Kevin. Thank you so very much.
Oh, thank you for responding, Kevin. Honestly, I think we have a responsibility as caregivers to give feedback negative or positive to those in the medical field. I've worked in a related field, and the positive feedback I received kept me loving the field I was in, far more than the pay cheque. I left the field when I burnt out, although I miss it very much. Sometimes I think physicians who run around with "GAWD" syndrome (God aren't we wonderful doctors) do so much psychological harm to their patients and those who love them. I honestly hope that this physician takes time and reflect upon her words. I'll also ensure that we don't see her again.
So true. I've not heard about GAWD - However I've met a few (and a few more). Professionally it is easy to bring them to a reasonable stance - One of my surprises is that once I no longer had a badge my reasoning, smiles and growling became less effective - curious.
Yes - I miss my profession too. The stupid thing is that I was at my very best at the very end. I do understand what you are saying there.
Sorry about the burnout - I've nearly been there - SNB syndrome was my thing a couple of times - (Singed and need a break).
I've posted to you elsewhere - I hope it isn't patronising - One just has to write as if the other does not know.
Strength to you.
Hello Adrianna
I have found that there is so many issues that pop up such as the burning legs/feet and then it goes, no rime nor reason.I would maybe write it all down and all questions and ask her neurologist to help you with answers.I'm not a believer in a naturopath when it comes neurological issues.Maybe try walking a bit more and leg massages,get her to do the ABC with her feet,it helps with the circulation.I also find that my husband will get one thing stuck in his mind for a while then on to something else. You need to know and get her wishes for end of life down print.The doctor did sound like a bit of a**.
Try to stay with the doctors that are familiar with her,unless your emergency and then you have no choice,and I have dealt with a few a** 's there.
Hi Dee. Thank you for responding. Yes, she is still so very depressed. Mental health services are so hard to come by...but I am going to see what we can find to access. I think palliative massage would help too, and also I will mention the ABC with her feet. I don't know that she is doing that. Yes, that doctor was a total a**. I did send a note off to her; just to let her know how unhelpful she was, and the situation she has created. Unfortunately, it does seem that a lot of doctors are not familiar with PSP. I've chatted with a couple of older GP's who have huge practices and they both said that they have never seen it in their lifetime, but they'd certainly heard of it. Just a wicked, nasty and mean disease.
There are standard guidelines for treating depression - You might want to Google "Nice Guidelines Depression" to get the UK ones. They describe the preferred treatment for depression which should be undertaken before referral on to highly specialist clinical care.
SSRI's are just about as effective as any medication.
The thing is that depression falls into very roughly three categories - Below is very crude - but it holds water.
Reactive - My cat died and my re-action is to feel low.
Chronic - Life has just knocked me down too many times.
Neurological - Something wrong in the brain making me feel low.
Speaking of the first two:
Medication is great at lessening the symptoms - and it can give us a space to recover a little, or even completely.
However sometimes something more is needed. Without going into the panoply of different speaking therapies... There is considerable research which shows how depressed people systematically choose the negative view. I show a depressed person a wedding picture of happy people and they will notice it's cloudy.
Something you might try is spending time with your sister reminiscing about the positive things in her life and positive things you have shared.
Helping her to chuckle - perhaps at dark jokes at first is very positive indeed.
Lastly there is a lot of research showing that smell can affect our mood a lot. Essentially one of the oldest parts of our brain in evolutionary terms, is that part of the brain which processes smell. I new a psychiatrist who kept an oil burner going throughout his clinic sessions. You might try that? Liz used to love it.
I do hope something here is helpful.
PSP brings such a great flattening of affect and that can look like depression, but where depression might be seen as stuck in a valley, flattened affect is just a flat path with no highs.It's easy to confuse the two.
Adrianna, you might consider registering a complaint wirh the Registrar of the College of Physicians and Surgeons for your province (sorry - brain fade..Saskatchewan?). I dont think that comment was.at all appropriate and may even have provoked further harm.
I don’t think it is ever okay to suggest assisted suicide unless the patient initiates. Regardless of it being legal it is a very sensitive subject especially with someone struggling with depression. Curious to know what drs get paid for this service or is this dr trying to make a name for them selves. They obviously have no relationship with their client as this is a first visit.
I agree Erna. Unless that physician knows the patient, (which she didn't), a flippant remark like that just opened Pandora's Box with a tremendous boom. There is still a huge learning curve I think for all of us in this country. I am going to honestly said that as a person of faith I struggle with MAiD, but I also acknowledge that it is not my life. In the meantime, I will continue to pray, and hope that we can find other suggestions which give meaning to a changing life. That one comment left her feeling so incapable and useless as a human being. It's so wrong that this physician thought it was "okay" to bring up MAiD. It is the law, but it's created a very slippery slope.
Anne, I wrote a note to the locum. It was very direct; and I do hope it gives her cause to think about what she says before she says it. Words once said cannot be taken back, and sis is just so emotionally fragile. It's heartbreaking to see her spirit broken. I am hoping we can give her some hope to live one day at a time.
Thank you so much for writing. I so much appreciate it...
Best of regards,
Adrianna
My husband had the same problem with his legs, plus he couldn't turn his head, move his eyes or blink.
Eyes drove him nuts.
He was told about medically assisted death and he grabbed at it.
Passed peacefully at home last month with dignity and at peace
I'm glad to hear it (MAID) worked well and was the appropriate course of action for your family, Mandy, since it's so new for us Canadians. He must have been a brave man. Heartbreaking, that it was the remedy for him, but at least he got to exercise his will.
How are you doing now? I see there are many widows on our site: there's lots of experienced company here.
Obviously the doctor needs training in talking to ill people !!! or any people !
However the need to find out how people feel and allow talking about their fears [ if they want it ] is really important. The sooner you can have a conversation about end of life the better. I know some don't want to and thats ok but they may want to talk to someone outside the family. It needs doing very sensitively and is about the patients feelings and wishes - no-one else.
I think feeling frightened and sad must be there for anyone diagnosed with PSP. How we deal with it without getting Depression is the issue. In the UK assisted suicide is not permitted so the issue of " how will I die? " is there for everyone. I never got a straight answer to this - although I always asked. This site gave me the facts !!!
You've got that right, Jean! One of the only questions my hubby has ever asked about the disease (CBD) is "How will I die?" Thanks to the open and sharing people here, past and present, I've been able to give him an honest clue, and it hasn't been upsetting to him.
I hear very mixed messages coming from sis. She is just over 60, and I think she had this quite awhile before she was diagnosed with this horrible disease. She goes back and forth between various stages, and every little sneeze results in panic. I am hopeful that seeing a grief counsellor will help her....asking the question "How will I die", is just so, so hard. Most days we are still at "I don't want to die" and I've accepted that she may never reach acceptance.
Terrified, she is absolutely terrified. I wish I could scoop her in my arms as if she were a child and rock her to sleep. I feel that more than anything right now, she needs some grief counselling for she has lost so many abilities in such a short period of time. I always tell her that we will always love her, and as her thought process is still very good; it does help a tiny bit. It is heartbreaking to see this...how I wish I could fix this.
So glad I found this site with so many wonderful people. Thank you for your response. In the midst of this horrible disease, I have found so much knowledge, kindness and love for mankind.
I'm glad you feel supported, Adrinna. Its very lonely caring for someone with PSP
If your sister talks to a counsellor it may help her to put her fears aside and focus on the good she can still have. I was a counsellor and I firmly believe that its the fears we can't face that eat us up. Bring it into the open and talk it through - but not necessarily with you !!
When Chris feet burnt I used to massage them with cooling foot balm. It soothed and was also contact from me. Its you smiling and loving her that will help her to feel worthwhile.
I will suggest the cooling foot balm. You are so right about the fears, and learning to focus on the good. I do believe sis still has so much to offer, and yet she does not see this in herself. I am hopeful that someone other than a family member can help sis understand that. In "About Death and Dying", Elizabeth Kubler Ross talks about the many stages of grief. I came to learn through my own experience that one can bounce back and forth through the various stages. Honestly, some of the things people have said to her are so unhelpful; which leads me to the old adage of if you don't know what to say better to simply say "I am sorry" than offer well "this is what worked for me", without knowing or understanding PSP.
I so agree with you, that the fears we can't face are those which tear us to pieces as we play them over in our mind.
Thank you for your very insightful post, Jean.
Hugs, Adrianna
In Canada no catholic hospital or affiliate nursing home will allow it, the Protestant hospitals and at home, or get transferred to Protestant hospital.
My husband was at home so it was done at home and we are not catholic, but catholic friends certainly agree with Maid
I know I responded before Mandy; I just wanted to let you know how sorry I am to hear about your husband's passing. It is good that he was able to be at home, and if this was his wish than it was good it was honoured. There are so many things that this wretched disease takes away from our loved ones. It is good that you are at peace with his decision. I can't imagine how difficult it was....for sis, the worst is yet to come and she is so terrified. I am so heartbroken that we cannot make this better...
Hubby (CBD) went to a naturopath for about a year without improvement. He received weekly IV therapy for six weeks, then a break and more sessions. In addition, he was told to take many, many supplements which we did. Finally we felt that the Dr's (he was an MD) motives were financial and we quit. On a bad day, I will wonder if we had continued would hubby be in a better place. Will never know.
Many thanks to all that contribute to this site. It is not only a wonderful support, but also a valuable learning tool.
Thank you Liz. This site is a Godsend! Each time I come here, I learn something new. What a wonderful support people are to each other. I think we do the best we can do with and for those we love. We are all helplessly human trying to get through the maze of these horrible diseases. So much of how we feel depends on the supports that are in place for our loved ones and ourselves. I recently told a rather snappish nurse about another family member "I hope you never experience someone talking to your loved ones; as you have talked to my loved ones".
Sending peace and best wishes and many thanks for responding...
Adrianna
Ordered a wonderful book on Amazon called LAST DANCE AT THE savoy it's a wonderful book wish I had read it before he left us
It's about a women caring for her husband for four years with PSP
I recommend reporting the doctor to College of Physicians and surgeons. Every province has their own. I reported a Doctor a few months back. I mistook this doctor for a cleaning lady because she was so dirty both her clothes and her body / hair. And she started telling me about laws she thought existed that actually don't. So I figured she certainly had some issues and someone needed to straighten her out so I handed it over to the college.
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Now, she is obsessed with dying. She talks about donating her organs before it's too late, and what a burden she has become...ever since the visit with this physician. 
What happens if she has another fall?
