Beryl

[Beryl]

Hello Ally

My relationship with John pre PD, was wonderful.  He was and still is my best friend, although the PD has robbed him of his smile, his sense of humour, his empathy and sympathy and much of his ability to express his emotions. John’s symptoms are mainly non-motor although his walking, balance and mobility is beginning to show changes now that impact on his / our daily life.He no longer drives anymore although he believes that he still could.

John’s speech is not good inspite of successfully completing the LSVT Loud course so I am not sure how effective a talking therapy would be as cognitively he has impairment with his thoughts and expression of those thoughts in a coherent way. I can understand by filling in the blanks but even I can’t do that all the time. I am sorry to say that we both get frustrated. I usually end up crying, usually on my own. I love my husband very much and my heart is broken.

We could and would talk for hours. We have no children. We just have each other.  As for someone coming in to care for him. I do not think he would want to co-operate with that idea yet.

XxBeryl

[Beryl]

Hello.
I can relate to both sleep deprivation and the anxiety of trying to be aware of what my husband is doing and where he is. I very rarely have time to myself, we don’t chat anymore about ordinary things like ordinary couples.. all topics are based around him and or Parkinsons. My husband was diagnosed 2 years ago. In this for the long haul. Sometimes though I am not sure in my grief for what is being lost I am losing myself too.
Beryl Price

[Beryl]

The hardest part is finding a way of communicating with John that there are some things that are not safe for him to do anymore. Eg. Climbing on step ladders. Fixing things around the home Eg electrical items. He no longer lays the table for dinner, he gets simple tasks jumbled up, he has problem dressing himself.. So why would I want him to climb steps. It’s so hard to watch him struggle.

[Beryl]

Hello

Newbee carer struggling to communicate with my husband. Most of his symptoms at the moment are nonmotor. I have read and researched the symptoms but reading about it doesn’t prepare me for the reality. I try to support him in things he wants to do but watching him and listening to him struggle breaks my heart a bit more than it is each time.

How do I do this.

Beryl

[Author]

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