Has anyone received a letter or phone call from the movement disorder specialist after losing your loved one? Different people walk this journey with us as we care for our loved ones - family, friends, hired caregivers, specialists. I was a bit surprised that his neurologist did not reach out with a letter or a phone call.
With the limited information they have on these diseases, you would think he would at least want to know how my husband eventually passed so they would have that to add to their data, to pass on to other patients.
Thoughts out there?
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journeyofjoy
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I got a very nice letter of condolence from our female neurologist the day after my wife died. She didn't need me to supply details because she had followed us throughout the progress of the disease. The fact the card came the next day proved she had been keeping in touch.
That is kind. We saw Sandy's neurologist every 2-3 months and had cancelled the last appointment, which was scheduled only four days before he died, because he was too weak to go. He is a very kind man. I think he just doesn't realize the importance of this part of his job.
I think we need to realise that these people are extremely busy and dealing with a large number of cases. Our neurologist saw my wife as a classic case of CBD and followed our journey from diagnosis to the end.
Larry’s neurologist has no idea he died. I wouldn’t expect him to call or write if you knew. I did let his physical therapist know because I liked her.
Dad's never did but then he had told dad about a year and half prior to dad's passing there was no medical reason for more appointments. Dad's primary doctor, nurse and o/t from the VA did call. The nursing home staff and doctor were very nice about offering condolences.
Sad but not surprising. Our neuro mentioned a new clinical trial that was coming up last January. He promised my husband that he would be the first one on the list. I have asked several times about it, but they keep giving me the run around. I feel like we’ve been forgotten or like they no longer care. I’m sure the doctor had good intentions but there was no follow through whatsoever.
I hope that you’re holding up okay. Sandy was a lucky man to have you as his wife and loving caregiver. I’m so sorry for your loss 💐
Thanks, everyone, for your responses. These people are busy but I think the real concern is that because these diseases are rare, they don't have much data. You'd think they'd want to know what happened in last stages and how they passed - from pneumonia or something else.
I had to cancel our appointment with the neurologist when hubby died. Zero reaction. Our GP, on the other hand, called me when he got the ?coroners’ ?paramedics’ notice... Much appreciated.
My son's Primary Care MD called and spent a good 10 minutes on the phone. You could tell he was calling from home as I heard his dog barking. He was also my Primary Care MD. My son's last Neurologist (who DX his PSP), sent me a personal letter. He was a kind man and my son and he had connected over musicians.
Absolutely zero. Only ever saw Steve’s twice. Did get a very sweet card from his GP. Shame he didn’t spend the same time caring for Steve, as he did on writing the card. Yes you are right, I threw it away, in little pieces!
Sadly, we had the same (lack of) reactions. No words from Neurologist - nice but useless. GP was the one assigned to the nursing home who was involved with P`s end of life care but no personal messages from any health workers.
We never heard a word from any of my husband's Drs, but my husband was in hospice so I'm not even sure any of them even know he died. We have such a shortage of Drs in our area, they're probably relieved to have one less patient. We only saw the neurologist twice and I think he retired a couple of years ago. I didn't even know to expect anything so I wasn't disappointed. I quite frankly felt pretty much abandoned by the medical community the last couple of years.
I emailed hospital appointments with list of appointments and had a shirt but kind response back . Nothing from any of the Consultants at hospital (Neurology, Neuro Psychiatry, Sleep disorders, Neuro Urology) But the most impersonal card imaginable from GP surgery addressed to deceased’s next of kin both on envelope and card. It would have taken such a small effort to have written a name!!! Your post reminds me I had meant to follow up with GP surgery!!
You had an appointment every 2 to 3 months? Crumbs! It will be 10 months since we last saw the specialist...and 9 months before that!
Mind you, there isn't much he can do, I guess, and services are greatly stretched in Spain. I think there is just one movement specialist for all of Almeria province.
Just surprised at the level of care other folk have enjoyed. We press on regardless.
I had a really lovely phone call from Addenbrookes a couple of days ago and was thanked for all the research John had taken part in. The doctors etc there were excellent and we were always told we could ring them any time if we had concerns x
There was no acknowledgement from the Neurologist when Ben died but I didn't expect one he only saw him twice including the the first visit when he suspected PSP. However his GP was just lovely, in the last few months of his life she made several visits to try to help with the various symptoms that arose and she came to sign the death certificate. She gave me a big hug and said it had been an honour to treat him and assist in fulfilling his wish of receiving no hospital intervention, only to receive treatment to keep him comfortable and as pain free as possible. Couldnt have been such a different story.
Interesting! I wouldn't expect to hear from our Neurologist as he had passed us over to the Palliative Care team in September as he felt he could no longer be of help to Chris. I think that's when our GP and I got together and talked about his end of life care. The care that our Doctor gave us was superb. He was always at the end of the phone and would come round as soon as he could, sometimes within minutes during the last two to three weeks. A real family doctor with traditional values.
Our neurologist saw W 4 times inside 5 years. He was very nice. On our last visit in Sept 2019 he didn't arrange another appointment but told me if I was anxious or concerned about W's condition, to phone or email him and he would see him. Before we left, he took me to one side and advised W was in the advanced stages of PSP and that he may have seizures, which he could treat with medication. Thankfully W never had one. When W passed away in December he sent me a lovely email and said how he enjoyed W's sense of humour. I also received a card from Professor C from Hong Kong University. W took part in her research into speech and PSP.
I was very surprised to receive a letter from the Neurologist when Mum died. When Mum was first diagnosed down south at Hillingdon Hospital I felt we had good support from the Neurology dept. However when she moved North things changed, whether this was because we were at a different stage or not, I don't know, but I do remember one of his letters to the GP saying Mum attended with her daughter who" was very frustrated"!
Anyway we used to get appointments about every 10 months and usually saw a nurse practitioner, then we got an appointment with the Neurologist in December, which I cancelled because Mum was too poorly to go. His secretary then rang and asked if I would like a telephone appointment, which I took, because as you say, surely they need to understand how this disease progresses and gain more data for their research. We had an ok conversation and he recognised we appeared to be in the latter stages. I then had a phone call to arrange a follow up telephone appointment and told them Mum had died and a few days later got a letter, which was very thoughtful of him.
After my mother’s passing, we received condolences by phone and cards from the hospice folks but not her neurologist. As with most PSP patients, once diagnosed there is not much more the neuro can do other than provide information and support.
Our hospice case manager did leave a lovely bottle of Tellamore D.E.W. Irish whiskey in my mailbox along with very personal message of how much she’ll miss my mom and our family...that was much appreciated!
Zero in our case too. After diagnosing mum he did not bother to tell us how to manage or what to expect. Didn't bother to follow up either. We had to do our own research and read about it. I guess he wanted us to find out how from others. Just feel angry whenever I cross paths with him and feel like punching him.
Your question summoned up some of my own frustrations about CBD/PSP/MSA. My husband's neurologists, with one exception, have never been "invested" in him as a human being, so I don't expect any acknowledgement from my husband's neurologists when he passes. I have twice received notes of condolence when I've had a pet euthanized, and the irony of this does not escape me.
He has been treated politely and generally respectfully but not with intense interest or concern, with one exception, a female neurologist whose father had Parkinsons. After two years she left our clinic and worked on a postdoc in palliative neurology so we lost her. Good for her! That's an area where more neurologists need training. Two years ago, when my husband nearly died of Type B flu, I insisted on a medical team conference before they discharged him from the hospital to my care. The senior resident on the neuro ward decided to skip the conference - just wasn't interesting enough for him -- and I lit into his conduct in front of the team and senior attending physician. Reminded them that a neurologist in their charge had turned his back on a rare opportunity to learn more about the care of rare condition and had been seriously negligent and intellectually lazy in doing so. I sound really bitchy, and maybe I was, but the nurses on the team later told me that everyone needed an advocate like me in the hospital and they gave me the "thumbs up." I do know, from this site, that sometimes it's necessary to do this.
But the bigger question for me continues to be why there is not more data collection, as you suggest. I am familiar with the protocols for formal scientific inquiries, but anecdotal data can also be summarized, analyzed and distilled to yield useful information. Last night as I watched the news about national responses to the coronavirus contagions, I couldn't help but wonder why, while the United States currently has 59 confirmed cases and we are talking about spending 2-8 million dollars on treatments and research, we have such paltry interest in sustained inquiries into rare neurological conditions, which though rare, affect many more people.
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