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Posts (7)

Thu, Jan 2 5:19pm · Weary of Caregiving in Caregivers

Without going into my story, I can say I feel your pain. This is why I an not working and will be retiring in June. It sounds like you need help around the house and will some of your family patients. I want to run away too!!!!! But I cannot. Today I finally cried and then put my self back together and went to Denny's and had a bit to eat. We need time for us and we have to tell people when we need it. Otherwise how will they know. I wish you the best!

Thu, Jan 2 1:07pm · Meet fellow Caregivers - Introduce yourself in Caregivers

My husband has MSA-C. this is a from of PD as nd it is rare. People with this disease use ice to cool.the body. I saw a man with a vest putting ice packs in it. The best is made for this condiction. I recomend looking into this.

May 8, 2019 · Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart in Parkinson's Disease

Yes this is what I was asking. Most people are misdiagnosed at first. Dr. have to see how patients do on meds and how fast they are progressing.
His breathing is getting worse. This is to be expected. This also leads to his ability to speak. So when the breathing is more difficult so is his speech. He works very hard on voice exercises all day but the ability is going down. This disease is so fast moving! I am think that by fall we may need a ramp. He is having a hard time going up the 2 steps from the garage to the house. We do have a chair lift in the house but not in the garage.
Thank you all for asking!!!!!!!!!!!!!!
If anyone want to know more about what we are going through please ask. I will be happy to share!

May 8, 2019 · Parkinson's along with Multiple Systems Atrophy (MSA) in Parkinson's Disease

Better! He increased the head of his bed and made some changes to his diet. The Dr. has him on an acid reflux medicine. His breathing and walking are getting a lot worse. I just try to take one step at a time.
It would be great to share information with others. I would not feel so alone. The more exposure the disease gets the better.

May 8, 2019 · Climbing Stairs with PD in Parkinson's Disease

First floor living was not an option for us. We had a chair lift put in. It works great!
My husband has been very good about when to make changes. He knew that the risk of falling was getting high, so he asked for the lift. Exercise is key in maintaining anything they do.

May 1, 2019 · Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart in Parkinson's Disease

Could her PD have been miss diagnose. The is common. My husband ,Lou, had this happen to him. He has MSA-C. He sees a movement specialist.

May 1, 2019 · Parkinson's along with Multiple Systems Atrophy (MSA) in Parkinson's Disease

My husband has this disease. He was diagnosed with MSA-C in Sept 2018. He showed signs of something being wrong about 21/2 to 3 years before the diagnose.
He started having a problem with his speech. Was having a hard time forming words. We 1st went to his GP who sent us to a nuero dr.. He was no help at all. We went back to the GP and was then sent to neurologist in Rochester NY who specializes in movement disorders. After seeing Dr. Barbanno for 1 1/2 years and another MRI it was conclude that my Husband has MSA-C. The "hot cross buns" showed on the MRI. Lou, my husband, did not respond well to PD meds and was getting worse FAST.
He does not have any tremors. His symptoms are problems walking, gait, swallowing, eyesight, muscle coordination, urinary mishaps, REM sleep disorder. The latest to add to this list is acid reflux in the middle of the night. He sleeps with the head of the bed up but there are time when I have to change the bedding the next morning.
Things that help are physical therapy and speech therapy. In short EXCERSICE. We have made changes to somethings like drinking from water bottles so if he drops it or it gets knocked over spills are small. Hard chairs in the dinning room and by the bedside, shower stall put in the 1/2 bath, chair lifts, railing for stairs, etc. Yes this list will get longer as the disease progresses.
I would like to extend my sincere sympathy to anyone who has this disease. There is no cure yet.
If anyone would like anymore information on my experience with Lou please let me know. So little is known about MSA and it is so hard to find any support groups because of its rarity.