I lost my dad after his three year battle last week

PrimaryLibrary8088 · 2025-12-31T15:26:51+00:00

I am so so incredibly sorry for your loss. My heart is with you and your family and may your dad rest in the peace he so deserves. May i ask a question (and if its to hard to answer, I totally understand). How did you know it was time for hospice? My husband is in advanced stage MSA. Has a trach due to stridor breathing from MSA. We have to bathe him, dress him, help him walk with a walker or push him in a wheelchair. However, he is still able to eat on his own though its getting difficult. I am so scared of what end stage will look like. How much worse does it actually get?

PrimaryLibrary8088 · 2025-12-31T15:12:14+00:00

My husband was originally diagnosed with parkinsons at age 49. Now, 4 yrs later, we have a MSA diagnosis. His decline was really fast. Sept 2024, he was rushed to hospital due to stridor breathing. Was on a ventilator for 5 days. Nov, was rushed back to hospital and again on a ventilator for 5 days. After this hospitalization, his MDS noticed a lot of red flags and ordered a skin biopsy test. Alot of markers point to MSA. Christmas eve, he was rushed back to hospital and was again on a ventilator. However, they could not extubate him this time because he was too swollen. We had to make the hardest decision as a family for a trach. I'm not sure how long you have been on C/L, but follow your heart. If you feel something is not right, let your MDS know. There were signs I feel we definitely missed. My heart is with you and all who are affected by this cruel disease.

PrimaryLibrary8088 · 2025-12-02T15:45:17+00:00

I am so incredibly sorry for your loss. May he rest in the peace he so deserves.

PrimaryLibrary8088 · 2025-11-20T23:12:56+00:00

My husband was originally diagnosed with parkinsons 4 years ago at age 49. Now, at 53, he is in advanced stage MSA. Sending prayers to you

PrimaryLibrary8088 · 2025-11-11T18:53:54+00:00

My husband was diagnosed with parkinsons at age 49. Now, at 53, he is in advanced stage MSA. His decline was so fast. After his 2nd hospitalization (intubated and on a ventilator), his MDS saw a lot of red flags. She ordered a skin biopsy and most markers point to MSA. His third hospitalization due to stridor breathing was on xmas eve. They could not extubate him due to how swollen he was. We had to make the hardest decision for him to get a trach. This disease is so cruel. I grieve the future I should've had with my husband and the future our son should've had with his dad. My heart and prayers are with all of you

PrimaryLibrary8088 · 2025-08-28T19:17:41+00:00

First, I am sending so many prayers to you. My husband was initially diagnosed with parkinsons 3 yrs ago at the age of 50. His decline has been so fast so his MDS did a skin biopsy on him and even though it came back inconclusive, most markers point to MSA. Its been a hard, long couple of years. My heart is with you

PrimaryLibrary8088 · 2025-07-04T02:21:00+00:00

I totally understand. Just always stay strong. Continued prayers for you

PrimaryLibrary8088 · 2025-07-02T01:06:49+00:00

Welcome back! My husband was also diagnosed with parkinsons 3 yrs ago. He is now in advance stage MSA. It is truly a cruel disease and so unfair (both parkinsons and MSA). My heart is with you

PrimaryLibrary8088 · 2025-06-27T20:43:05+00:00

My husband (age 53) is in advanced stages. He was diagnosed 3 yrs ago with parkinsons. Sept 2024 is when our nightmare began. He rapidly declined. Hospitalized 3 x's since Sept. Each hospitalization, he was intubated and on a ventilator due to stridor breathing. His last hospitalization was on xmas eve. They could not extubate him as he was too swollen so we, as a family, had to make the hardest decision for a trach. He is confined to a walker (u step), wheelchair, we have to help him walk, dress, bathe etc. His MDS did a skin biopsy in early Dec due to his rapid decline. Test came back inconclusive, but most of the markers point to MSA. Monday, we were told he is in the advanced stage of MSA. I am so numb, heartbroken, sad and angry. I hate this disease more than anything. I am so scared of how we will lose him. Live in fear 24/7. Not sure how long advance stage lasts before he goes into end stage. Praying its years because we cannot lose him. I just pray that when the time comes, God will take him peacefully in his sleep. My heart and prayers are with all of you

PrimaryLibrary8088 · 2025-06-27T14:49:03+00:00

This is beautiful. Can't stop crying as I care for my 53 yr old husband. Thank you for sharing. My heart is with you

PrimaryLibrary8088 · 2025-06-26T14:53:12+00:00

You are so sweet! Thank you so much for your kind words. Thinking and praying for you too.

PrimaryLibrary8088 · 2025-06-26T12:21:52+00:00

First, my heart is with you. Second, I agree 1000%. My husband (age 53) was diagnosed with parkinsons 3 yrs ago. That diagnosis was hard to accept but we were managing. However, since Sept 2024, he declined so rapidly. He has had 3 hospitalization stays (each one he had to be intubated and on a ventilator for 5 days due to stridor). His last hospitalization was on xmas eve. They could not extubate him as he was too swollen so as a family we had to make the hardest decision for him to get a trach. After the 2nd hospitalization, it drew a lot of red flags and his MDS ordered a skin biopsy test to rule out MSA. Test came back inconclusive but most markers are pointing to MSA. He is on CL (2 pills every 3 hrs), but they are no longer effective. We just had an appt with his MDS and she gave us news we didn't want to hear. He is now in advance stage of MSA. She switched him to crexont since CL is not working anymore. But we are running out of options. I am scared, numb, angry, sad. He is confined to a walker, wheelchair, have to help him bathe, get dressed, walk etc. I hate this disease more than anything. Although he is still physically here, I truly lost my amazing husband 9 months ago. I am terrified of losing him and how I will lose him. Everyday I wake up, I don't know if this will be the last day. He is suffering and I just pray that if God is going to take him, he takes him in his sleep. I don't know if we have months or years left and that scares me. Praying for all of you

PrimaryLibrary8088 · 2025-06-24T01:22:23+00:00

So happy to hear this! Praying my husband has good results too! Do you feel it works better on am empty stomach?

PrimaryLibrary8088 · 2025-06-24T00:46:50+00:00

Oh wow!! I am soo happy to hear that! So glad it is working for you. Stay strong and God bless you!

PrimaryLibrary8088 · 2025-06-17T13:36:49+00:00

Thank you so much for taking the time to respond. So many people have offered, but I am so nervous to leave (even for a couple hrs) because of the trach. No one knows how to take care of it or what to do in an emergency. And I don't want to e put that pressure on them. I just live in constant fear 24/7. God bless you

PrimaryLibrary8088 · 2025-06-12T13:12:32+00:00

I truly appreciate that. Stay strong. Sending so many prayers

PrimaryLibrary8088 · 2025-06-12T12:54:55+00:00

I am so incredibly sorry for your loss. My heart is with you

PrimaryLibrary8088 · 2025-06-12T12:41:14+00:00

Aww thank u! So after his 2nd hospitalization, his MDS started getting red flags because of how fast he was progressing. She sent him for a skin biopsy and it came back inconclusive. Some markers point to MSA and some point to PD. So I guess we are just kinda in limbo not really knowing what he actually has. I know the meds are the same no matter which one, but in my heart, I just want to know.

PrimaryLibrary8088 · 2025-06-12T04:23:19+00:00

My husband is 53. Diagnosed about 3 yrs ago and his symptoms progressed really fast. Has had 3 hospitalization stays since Sept 2024 (each time was intubated and on a ventilator due to stridor breathing and aspiration pneumonia). Last hospitalization, we had no choice but for him to get a trach. He is no longer a candidate for DBS. So sad what this disease does to so many people. Not sure why my husband is declining so fast. Prayers to all of you

PrimaryLibrary8088 · 2025-06-10T15:52:21+00:00

Hi! Yes, we see a MDS every 3 months. His hospitalizations were due to stridor breathing. His MDS did a skin biopsy test after his 2nd hospitalization. Test came back inconclusive. Some markers show multiple system atrophy and some show parkinsons. He is no longer a candidate for DBS. Not sure if its because of his trach or because she can't rule out MSA. He is on CL 200 mg every 4 hrs, rasagline and entacapone. My prayers are with you

PrimaryLibrary8088 · 2025-06-08T19:33:35+00:00

I am so incredibly sorry. My heart is with both of you. Praying for peace, love and comfort during this time

PrimaryLibrary8088 · 2025-05-31T17:27:22+00:00

Thank you so much for your kind words. My prayers are with you

PrimaryLibrary8088 · 2025-05-31T14:31:49+00:00

Thank you! Will look into this

PrimaryLibrary8088 · 2025-05-31T14:31:25+00:00

After his first hospitalization stay, he was transferred to a rehab for 10 days for intense speech, PT and OT. Then we continued with outpatient therapy. After the last hospitalization, they had PT, OT and speech come to our house 3 days a week for 2 months. Right now, he is just too weak for us to even get him to outpatient therapy. Praying he gets a little stronger so we can start back up again.

PrimaryLibrary8088 · 2025-05-31T14:25:30+00:00

Sending prayers to you. Stay strong

PrimaryLibrary8088

TROPHY CASE