Anxiety, Depression, and Coping with Multiple System Atrophy | 2021 MSA Coalition Annual Conference

[@mollyrlavictoire8418]

My sister and Myself both suffer from MSA (C) This presentation has been helpful for me and my husband (caretaker) Thank you!

[@Saltynutz333]

My mother died from this horrible MSA disease. She passed away on January 9, 2022 at 6:35 PM. I was her son and caregiver as I saw this disease take her life. At first, our family was told she had Parkinson’s disease when I remembered she had her first unexplained fall about 15 years ago as it was just dismissed she fell because she had vertigo. The last few years, as we thought she was progressing with Parkinson’s disease we were told by other neurologist of doctors she saw that her symptoms were more severe then just a person having PD. My mom couldn’t walk no more. She couldn’t eat/take liquids or she be choking and coughing. My mother had a G-Tube surgically implanted in her stomach in late 2020 after her doctor made a suggestion she needed a feeding tube implanted in her stomach or she would soon die because she no longer had any appetite and she lost so much weight weighing at just 94 pounds. After the surgery was completed we were told it would add 1 year of life for her that was stated by the doctor who successfully completed inserting the G-tube on her stomach. The last 6 weeks of my mother’s life, she lost her voice permanently at the end of November 2021. She also had just gotten over most of viral pneumonia she got at the end October 2021. Unfortunately, my mother had non-stop secretions (clear) slimy fluid as she was coughing this up. I could hear all the water/congestion sounds in her chest cavity that stayed with her for months until the last few weeks before her death (January 9, 2022) when she wasn’t moving or eating or drinking anything for weeks. She could barely open her eyes and I think my mother fell into a semi-coma but I am not sure since we hired a new caregiver to help me care for my mother but she was not a good caregiver as she was not giving me updates on my mother health for over 3-4 weeks until my mother died. 😞 😭 I wished there was a cure for Parkinson’s/MSA and other life threatening diseases. It just doesn’t seem they can find any cures in there lifetime and I’m sure they won’t find any cures in my lifetime. 😞 Will it take 500 years to find a cure? 😞

[@toryberch]

GB, first I want to say how deeply truly sorry I am for your recent loss of your loving Mom. Not everyone can give such intimate personal care of their loved one so I want to commend you for giving of yourself. I won't have that opportunity, I don't mean that to sound bad in any way but for me it's just what's going to be. I am doing my homework on my symptoms as time goes on. I do feel like at times I have MSA but my symptoms are few to fit the criteria. One symptom I've had for years is I can sigh heavily out of the blue. My daughter or husband will look at me and say what's wrong? My balance and cognition is changing at a modest to medium speed in the last couple of months. Did your mom ever get urinary tract infections if so did it worsen her MSA? I ask because I came down with one in late Dec and my symptoms were so bad I could barely turn over or get out of bed to walk. It lasted about a week then calmed down. I lost my mom to a sudden heart attack Nobody got to say goodbye. But I do find this hope comforting and reassuring and would like to share it with you it's found in the Bible at Revelation 21:4 It says He(God) will wipe out every tear from their eyes and death will be no more , neither will mourning nor outcry nor pain be anymore. These things will be no more. If you look up Ps 37:11/29 it goes further to comfort all. It really sounds like you did everything humanly possible to keep her going and comfortable. Thank you so much GB for sharing your story so others can benefit from it. God bless 🌼💐🌼💐

[@SkinnyDogDesign]

Swimming helps as does riding a trike

[@toryberch]

I recently told my Neurologist that when this stronger type of anxiety that comes over me is like a warm uncomfortable flushing feeling in the brain and body and is helped with the levodopa. I'm still in the parkinsonism phase and still learning. Not sure if Parkinsons causes feet at times to get tangled up and can look like the scarecrow from wizard of oz when he's let off the pole lol. But that's what my walking can look like

[@thehatman3089]

Good job that you helping people I would also include that we have to put our trust in The One God who has created us and do what we have to in life and leave the rest to Him. Call on Him Alone without a partner or any association just Him Alone and believe me you will be guided. "Trust Him but Tie your Camel" words of Prophet Muhammad. Do also get help from therapist and medical but don't ever lose hope in Him.