Family member new to this


#1
My mother was dx with PD a few years ago. She is much slower but she lives alone and is still leading a busy active life. She says she doesn't need any specific help at the moment and is attending things recommended by the nurse.

Firstly I was wondering what I can do at this stage which may help practically or mentally maybe under the guise of not appearing like I am - I am thinking arranging some relaxing holidays where I do driving, organisation etc, a massage spa or treatments like manicures. Any thoughts?

Secondly I was wondering what carers found to be the first things they had to help with. With my mother living alone I am apprehensive as to what she will need help with first and whether I am going to be able to provide that.

Thanks

#2
Welcome to the forum, CassieS!

I am a pwp rather than a caregiver, but I thought I'd reply from the patient's point of view. If your mother is still leading an active life, even though she may move more slowly, I think you should encourage her to keep doing so, and especially to get as much vigorous exercise as she can. I've had pd 16 years now, and I am also still leading an active life. Since the death of my husband last year, I live alone, too.

As to helping your mother, you will need to find out if she is the sort of person who likes assistance with tasks that grow difficult for her, or if she'd rather be allowed to do things herself and might resent offers of help. We experience a strange mix of feelings: hurt pride, desire for continued independence, yet also a need for sympathy. If your communication is open, you can discuss her feelings and preferences. In my case, the most important thing to me is that my old friends and relatives treat me as the same person they've always known -- because I am the same inside despite any visible pd symptoms on the outside!

I'm sure you'll hear from some carers on the forum and get more valuable advice.
My best regards to you and your mother.

#3
Hi Cassi,

I am afraid its a wait and see situation. I am 73 and diagnosed four years ago and no one would know I had PD (unless they are a fellow Parkie) and yet I know other ladies the same age whose mobility has been affected quite a lot. They sometimes call PD the designer disease because beyond the more common symptoms of rigidity, coordination problems and tremor, there are many other effects which your mother may or may not have and then there is the individuality of response to the medication. If your mother has lost confidence as a result of her symptoms, this would be something to work on and she will certainly improve once on meds. as long as she does not think the battle is lost. Use it or lose it applies even more so to PWP's (Persons with Parkinsons). Lots of information on this PD UK site and advice and encouragement for you and your mother on this forum.

Best wishes