Martin, my husband, was diagnosed in September 2023 but had symptoms since 2017. I’ve posted before about this but it’s especially painful at this time of year. We all love Christmas in our family. I noticed a change in Martin’s walking, he was lopsided to the right of his body. We spoke to the GP (Martin was 65 at this point) who suspected Parkinson’s but, to be sure, he referred us to a specialist. He too confirmed Parkinson’s and agreed to see Martin in 6 months. At his next appointment, he said he didn’t think it was Parkinson’s as he didn’t have a tremor. He didn’t know what was wrong but agreed to see him in 12 months. As the persistent younger wife I am (still) we saw the GP again and he said that it was “old age” and Martin was unlucky. We saw a private consultant after that but he was more interested in cricket (and Martin was happy to engage) than Martin’s health. We paused for a while and then COVID descended on upon us all and life was all about being together. We were lucky, we all loved each other and spending time together was a gift. Fast forward to January 2023, lots of tests, more consultants, including one whom specialised in dementia, Martin was then diagnosed with Hydrocephalus. I was not happy with that diagnosis so the consultant agreed to test this. Martin did a memory/movement test, they then drained fluid off his brain, and did the test again, No difference, which meant Martin did not have Hydrocephalus. This was July 2023. After several requests for more information, we finally saw a consultant whom specialised in PSP. The only frame of reference for me when talking about PSP was thinking about my son on his PlayStation! She diagnosed Martin with PSP in September 2023. Martin has had PSP for 6 years and his health is deteriorating rapidly: sleeping a lot, not eating much, not talking or engaging, not able to walk. The point of this message is to say that Martin is bigger than his illness and I want people to know his name. Dr Martin Howard Richardson. Merry Christmas/Happy Holidays to all.
Christmas : Martin, my husband, was... - PSP Association
Christmas
Merry Christmas I have a similar story and it is good to remember who your husband or wife was before diagnosis. My thoughts are with you all x
Dear Darlington, I read your account of what you and Martin have endured during your 6 year quest for a diagnosis and a competent physician ! That this is more often the norm than the exception is a travesty! How often we read of similar exhausting and frustrating accounts of what amounts to experiencing gross incompetence and malpractice ! In fact , I believe that most of us have experienced a variation of what you've described ! It appears that most physicians do not have the knowledge base nor any interest in learning beyond what they'd gleaned before graduating from Med. school. If anyone has a diagnosis that is uncommon , it's a monumental challenge for the patient and/or their advocate to find a knowledgeable and experienced professional who can even be bothered to give more than 10 to 15 min. of their time ! This treadmill is costly and harmful to the patient and their loved ones ; never the practitioners ! The excellent physicians that I know, are aware of the many shortcomings of our health care system and are just as frustrated by it as we are !
You may have seen posts fromTim of Canada recently, regarding an organized effort to bring increased awareness of the lesser known neurological diagnoses. I think that he is Co-Chair of a sponsored campaign entitled "Faces and Voices". (Hopefully I've not misremembered the title). I think that you are an ideal and eloquent candidate to be one of the "voices" regarding PSP . The more people who record their own or their loved ones "story" the more that people all over the world will become informed about these illnesses. Information yields results ! The instructions for how to go about it are on the site. I think that you'll be able to find Tim's postings easily. You can also communicate directly with Tim for more information. I really think that what you've written is pretty much verbatim what would make a very meaningful and educational offering.
Thank you so much for what you've disclosed regarding what is most definitely a herculean effort on your and Martin's part ! I know that you've only written what is the tip of the iceburg ! I think that it deserves to be heard by an even greater number of people ! By the way. it would be a much more humane world if everyone could have even one such dedicated , capable, and loving caregiver as yourself and others that I've 'met' on this site !
Thank you for introducing us to your husband , Dr Martin Howard Richardson. Knowing his name definitely personalizes his circumstances and the words take on even greater gravity ! Sending you and your husband wishes for health , peace , and joy this Christmas season and as you continue to love and advocate for him !
He's in good hands for sure , and I'm encouraged to know that ! ❣️
Please take good care of yourselves. Lots of love and best wishes from us here in LI, New York 🎄❤️💚❤️🕊
Elise
Hi
You are on the same path that my husband is currently on, but sadly today I’m not sure he will even know it’s Christmas. I’m sure we will still laugh, like we do every year before we open presents and the girls will say ‘don’t start yet until dad has his bin bag for the discarded wrapping paper’. But this and the hundreds of other memories are what’s keeping us going. Stay strong and wishing you a Merry Christmas x
Ps, we have female neuro consultant and she’s brilliant x
Hi Darlingtonian!
I was impressed by your message defending the person above the illness.
A big hug and a family-friendly and endearing Christmas.
Luis
I too was told “we’re none of us getting any younger “ in other words it was old age! My story starts in March 2019 when I had a stroke which left me right sided paralysed. I was, however, gradually improving to the extent of being able to wash, dress, cook, feed and take myself to the toilet. I was also able walk about the house, barefoot, without a stick of any kind. Basically I was self sufficient. Along came lockdown then , coincidentally, as we came out of it I noticed some changes. I thought it may be because I had not been as active until I remembered I had used the loo just as many times but I was no longer able to pull my knickers up using both hands. Anyway things deteriorated quite quickly to the extent not only could I no longer pull my knickers up with both hands, I could no longer tear along the perforations on the loo roll! I found it increasingly difficult to dress myself, I could no longer make myself a hot drink, let alone a meal. Then I started having difficulty walking, even with a stick plus a leg brace. I saw my GP who said the above. However she did refer me to an OT who came every week or two to exercise me; part of which was walking. That deteriorated so she emailed the GP for a referral to a neurologist. The GP actually said it was nothing to do with her! Unbelievable, but true. Anyway she insisted it was and so i eventually got to see the neurologist who, about a minute in, after some perfunctory exercises, proclaimed I was suffering from PSP earlier this year. I admit though that the same GP actually, not figuratively, later put her hands up and said she’d never heard of PSP, despite having worked in the stroke ward of a hospital during her training. For stroke I read neurology.
Anyway, a Very Merry Christmas to you, Martin, and the rest of your family.
So it's the medical schools that need informing of PSP/CBD, especially those specialising in neurological studies.All power to you for posting your difficult story and for the continuation of your PSP journey. 💚
Peace at Christmas.
Morphine
Parkinson’s ▶️ PSP
Dad in late stage PSP
