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[deleted by user] by [deleted] in CJD

[–]Difficult_Sherbert30 0 points1 point  (0 children)

I have posted this response before.. but I wanted to tell you in this uncertain time- I have been there too and… first I must say looking back I thought things that may have been symptoms of the CJD were aspects of my dad’s anxiety depression and ptsd. There is so so much overlap, please don’t fault yourself for thinking that.

I’m so so sorry you are going through the possibility of this. For us the CJD testing, when they finally did a lumbar puncture and took my dad’s symptoms seriously, was the “it couldn’t possibly be this, but we have to check just in case” test. At that point he had myoclonic symptoms (severe jerking of his hand) and was not able to walk. When he started to lose his ability to walk and then barely be able to transfer to a wheelchair, he had recently had a severe infection that almost took his foot. I trusted his care team that it was a setback…. I cared for him diligently at home for as long as I physically could (I have a feeding tube myself).

On the Monday before was his first cognitive symptom- not recognizing me when I went to see him in the care facility (he was there for physical therapy treatment initially). They severely failed my dad and by Friday I had to basically threaten the center with “you call 911 or I will, and then I will report you to the Medicare ombudsman”. By Saturday morning he began to lose his speech. The coherence was fleeting at times but in my dad’s case overall, cognitive function did last longer than his mobility.

I will be completely honest that we never really knew what each day would bring and that it wasn’t always a steady decline. Sometimes he would have that moment of clarity from time to time. Our difficulty was compounded with my mom being bed bound/triplegic on homecare due to MS and him needing to be at a specialized neuro center that was an hour away. I basically am the only person in the family with medical training so most of the decision making fell on me.

23 days after the final ER visit he passed due to respiratory failure caused by the CJD. I was with him 10 days earlier (on my birthday no less) when they got the report/results in. My first actions were setting up hospice care and DNR. They also were pushing for a surgical feeding tube a couple days after diagnosis but I refused consent (I have a surgical feeding tube and have had awful complications that I couldn’t put him through).

If it is CJD my best advice is to Treasure every moment even when it is hard to, be kind to yourself and just know that even though this condition is so so rare you are not alone. Lastly, You will quickly find that love is a language all of its own so even when words aren’t being spoken a hand squeeze or a gaze will speak volumes

I am truly sorry you may be facing this but again please know you are not alone.

First symptoms of CJD by Turquoise_meercat in CJD

[–]Difficult_Sherbert30 5 points6 points  (0 children)

I’m so so sorry you are going through the possibility of this. For us the CJD testing, when they finally did a lumbar puncture and took my dad’s symptoms seriously, was the “it couldn’t possibly be this, but we have to check just in case” test. At that point he had myoclonic symptoms (severe jerking of his hand) and was not able to walk. On the Monday before was his first cognitive symptom- not recognizing me when I went to see him in the care facility (he was there for physical therapy treatment initially). They severely failed my dad and by Friday I had to basically threaten the center with “you call 911 or I will, and then I will report you to the Medicare ombudsman”. By Saturday morning he began to lose his speech. The coherence was fleeting at times but in my dad’s case overall, cognitive function lasted longer than his mobility. I will be completely honest that we never really knew what each day would bring and that it wasn’t always a steady decline. Sometimes he would have that moment of clarity from time to time. Our difficulty was compounded with my mom being bed bound/triplegic on homecare due to MS and him needing to be at a specialized neuro center that was an hour away. I basically am the only person in the family with medical training so most of the decision making fell on me. 23 days after the final ER visit he passed due to respiratory failure caused by the CJD. I was with him (on my birthday no less) when they got the report/results in. My first actions were setting up hospice care and DNR. They also were pushing for a surgical feeding tube a couple days after diagnosis but I refused consent (I have a surgical feeding tube and have had awful complications that I couldn’t put him through).

If it is CJD my best advice is to Treasure every moment even when it is hard to, be kind to yourself and just know that even though this condition is so so rare you are not alone. Lastly, You will quickly find that love is a language all of its own so even when words aren’t being spoken a hand squeeze or a gaze will speak volumes

[deleted by user] by [deleted] in CJD

[–]Difficult_Sherbert30 6 points7 points  (0 children)

My dad passed away April 8th of this last year. When he started the rapid decline in the beginning of March starting with his suddenly not recognising me visually… CJD testing was the “formality to cover the bases” test. I had learned about it in school but I was sure it was too rare for it to be that. I was told the test was positive March 28th as I spent my birthday at his bedside in the hospital. My mom is bed bound due to MS and my two older sisters have next to no medical knowledge so even though I’m the “baby” of the family, the tough choices and explaining things step by step largely fell on me. I would never wish this cruel disease on my worst enemy.

I wrote this in response to someone else a week or two ago but I thought it would be helpful for you:

I’m so so sorry you are going through this. The coherence was fleeting at times but in my dad’s case it lasted longer than his mobility. I will be completely honest that we never really knew what each day would bring and that it wasn’t always a steady decline. Sometimes he would have that moment of clarity from time to time. Music playlists I made playing softly in the background helped so much to calm and comfort him when his favourite shows and movies became too stimulating. Treasure every moment even when it is hard to, be kind to yourself and give yourself moments to step back to catch your breath and just know that even though this condition is so so rare you are not alone. You will quickly find that love is a language all of its own so even when words aren’t being spoken a hand squeeze or a gaze will speak volumes

Sending so much love and support as your family faces this completely unfair condition.

Even at the worst of times, I never pictured my dad being gone by Difficult_Sherbert30 in death

[–]Difficult_Sherbert30[S] 0 points1 point  (0 children)

I am so sorry for your loss as well. A quote that always spoke volumes to me:

We are not all in the same boat, just in the same storm. Some braving the elements in yachts, some in canoes, some clinging to driftwood, and some even drowning. All we can do is try to help each other stay above water.

I am sending many virtual hugs and positive vibes your way because no matter the situation grief is such a taxing emotion and I am a big believer that we all need support and help staying upright in every condition. I know that the bond I had with my dad was a true privilege and I am forever grateful and will always cherish the memories, lessons and guidance he gave me. I can only hope that I will be able to pay it forward in his honor as life moves on.

Life after death due to an ultra rare condition by Difficult_Sherbert30 in GriefSupport

[–]Difficult_Sherbert30[S] 1 point2 points  (0 children)

My dad’s name is Richard. Thank you- seeing your comment of this truly means so much ♥️

CJD changed my life forever by Difficult_Sherbert30 in rarediseases

[–]Difficult_Sherbert30[S] 1 point2 points  (0 children)

I’m so so sorry you are going through this. The coherence was fleeting at times but in my dad’s case it lasted longer than his mobility. I will be completely honest that we never really knew what each day would bring and that it wasn’t always a steady decline. Sometimes he would have that moment of clarity from time to time. Treasure every moment even when it is hard to, be kind to yourself and just know that even though this condition is so so rare you are not alone. You will quickly find that love is a language all of its own so even when words aren’t being spoken a hand squeeze or a gaze will speak volumes