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Posts (9)

Sun, Jun 7 9:51pm · Stopping medication in Caregivers

Thank you to all who replied to my post. Sorry it has taken so long for me to respond.
He still is not taking his water pills but his body is maintaining . His mood have gotten a bit better but not much. Heart to heart talks are no longer a thing for us. It gard for him to speak. I manage by having my daughter and her boyfriend living with us. I am very grateful for them. I spend a lot of time in the yard.
I hate all of this! But I do believe that God will not give more than I can handle. Right now my goal is to get my husband to the finish line. What God has in store for remains to be seen
Thank you again for all of your support!

Sat, May 16 8:59am · Stopping medication in Caregivers

My husband has decided to stop his water pills.
He has MSA-C. This is a form of PD. There is no cure for this and no meds to slow it down. The disease is progressing to a point that we now have more equipment for him in our home. A PT person is coming twice a week. I now have to sleep in a different room due to his request. I spoke to our family doctor and was told that it is going to take many weeks before his major organs start to become effected. If this were me I would think I would want my Husband of over 30 years to be beside me.

If he takes the water pills he spends all day going to the bath room. Not good. Truth is that there is only little change in the retention of fluids. He says he is tried of taking pills. I don't blame him for feeling this way. But this is hard form me. He has told me he wants to die. I feel like there is a fork in the river and a part of me is drifting away and I am lost on this new wide a fast river.

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.