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Started by Carforus
04 Dec 2013, 11:51 PM

Would like to hear from others, who may be caring for a spouse with Parkinson's in early sixties. If anyone would like to share difficulties experienced, management of difficulties, physically and psychologically would both be welcomed. Ths.  
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Reply by NatR
05 Dec 2013, 2:55 AM

Hi Carforus

thank you for finding the forum.  I don't have specific info for Parkinson's but I have done my share of caregiving both in facilities home and for family.

Glad you found the group - we try to share burdens and lift each other up. Do you have any caregivers to help ease your load? Or is it too soon to need that kind of support?
Are there family members close by to visit or offer support?

here you can share your feelings and ask questions - or just vent and be heard

we all become a circle of support;)
best wishes
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Reply by JennJilks
05 Dec 2013, 12:07 PM

As with Nat, I've had a few clients with Parkinson's, but no direct experiences.

There are support groups for people caring for loved ones. 
The Mayo Clinic has an excellent website. 
There are many sources of information, but do ensure that you find a reliable one. Here is an article I wrote: some strategies to incorporate on find good sites.
For example: Parkinson Society Canada, which will help you find information, and a support group specific to this disease.

What might be important for you is to understand the disease trajectory, which symptoms you might expect, which will allow you to plan for them and determine how to manage them.
For example, whilst caring for my dad who had a brain tumour, I should have been cautioned to watch for dementia (a symptom of this disease), headaches (as the tumour grew, he had unrecognized pain), as well as delirium from a urinary tract infection due to the radiation treatments.
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Reply by Carforus
08 Dec 2013, 2:05 AM

Thank you, to you both Nat and Jenn, 

As for other caregivers at this time, there are not others in the same city available, at least for the present. It is also too soon for that requirement. It is fortunate that my spouse is able to continue to work three days per week. This is a gift, as work has been so much of his life. I know he will have a difficult time once work will be necessay to relinquish. When, that will become necessay is not easily forseen for now. I am grateful for having found this forum.  

Thanks for the suggested Mayo Clinic website, Jenn, and your article on strategies for finding good sites. Understanding the direction the disease will take is very important.
Dimentia is also common to Parkinson's patients. At what point this occurs will vary I understand with the individual. The unrecognized pain you mention is a factor we 
do not always take into account. Side effects from medications, we are all aware of, but, how they present with an individual I believe varies. Your comment on infection due to radiation for your dad, is something which would not have occurred to me. Thanks again. I find this very helpful.
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Reply by moderator | modératrice
08 Dec 2013, 3:49 PM

Welcome Carforus.

You're quite right that we don't have a group of people sharing specifically about Parkinson's disease on our forum (yet). As our community grows, I am confident that you will find others who share your experience. Having said that, there is a lot of important sharing that we do here that is not specific to any disease, such as the challenges of caregiving, dealing with changes and loss, and so on.

We offer a community where you can talk openly and freely about the situations concerning you the most. I'm sure you've noticed the supportive, welcoming tone of the community members. Members listen first and we never judge. Often just being heard is what people need most. The strength of community can help to accept, make decisions or let go - what ever one needs. We're glad you found us.

Thank you for starting a new thread in the "I care about someone" forum. It is well placed there and people will find it. I renamed your thread and called it:

Caring for someone with Parkinson's

NatR and Jenn, I hope you will join the discussion with Carforus and Marstin in the new thread.

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Reply by Carforus
09 Dec 2013, 2:54 AM

Thanks Colleen. 
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