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Ataxia Support Network

Do Not Delay


#1

I’ve learned over the previous weeks that, one must plan ahead in terms of planning for the future. Many organizations (government or other) experience some sort of delay in processing requests. It takes time to ensure all our needs are met throughly and professionally.
I recently met with a care coordinator. It was determined that I required, or could in the future require certain services such as a PSW (personal support worker). I was added to a waiting list.
An OT (occupational therapist) came to visit, she determined I would be best to use a power-chair vs a manual wheelchair among other items to make my life easier. I have to wait for an ADP Authorizer (an arm of the provincial government) to apply for financial assistance.
I discussed with the care coordinator the possibility of having to enter a care facility, there is a 6 month wait list to get a room.
It was discussed that I might benefit from PT (physiotherapy), I was placed on a waiting list.
Years ago I was referred by my family physician to a movement disorder clinic, there was a wait list. Now it is two years long.
So you get the idea. If you think you might now or in the future require some form of healthcare service private or otherwise, please do not hesitate to at least get the ball rolling. Often times there may be a waiting list for service.


#2

I hope you move quickly up the lists :slightly_smiling_face: Last year I had treatment for a pre cancerous mole, as soon as I detected another one I was put on a list. Lists, and queues, they’re sent to test us :smirk: xB


#3

I hope so too! It is only recently that I have become impatient with my condition. Normally I would not wish for such speedy treatments.
This is one moment where I most desire my condition to move along or end period. Now I realize where the term “patient” comes from or why a person is called “a patient”! One must be patient! :joy: :thinking:
Waiting has also put into perspective, the severity scale of my symptoms.Or a lack of severity. I’ve found that I either recognize and acknowledge my symptoms and ramp them up to be worse than they are. Or I don’t realize them at all and neglect them.


#4

Hutchy, a very wise post. Yes, planning ahead and opening up a line of communication with the health authority (or your insurance or whatever “cogs” make up your health care machine) before you are desperate is really important. Wait lists are a fact of busy systems, and your best bet is to get to know about how it all works before you are desperate.

And your comment about having to be “a patient patient” is so true in almost every health care context!

Seenie


#5

Well I have attained the services of a PSW (personal support worker) two days/wk to help me with showers/baths. Maybe I don’t necessarily require her today, but maybe in the near future. Maybe I’m just stubborn! I know I have to start at some point.
I must admit, having someone bath me is slightly humiliating, but I will overcome this and I know this is needed. My PSW seems very professional.
Less invasive, I have had a visit from a physiotherapist. She has completed her initial assessment on me and will return next week with a plan and start some therapy.
An authorizer from the government will come to my home next week to assess my financial needs for a power wheelchair.
All this seems to me unnecessary at this moment, but I know sometimes these services can be a while to get started.
I’m maybe worse off than I think occasionally (probably more often than not… maybe) But I can’t stress enough, do not delay getting help. Admitting you need it is half the battle. Often times we leave it too long when it comes to acquiring assistance.