I am now entering my fourth year of living with Parkinson’s. I am fortunate to have a very supportive husband and family and that I remain reasonably independent and continue to work. There are some unmet needs though, that need expression.At some point we are likely to have to face the fact that I cannot continue to work. Luckily we don’t have a mortgage to pay or children to support. For those who do have these considerations, giving up wprk could have significant impact.
I am linked in with the local MS & Parkison’s society and attend a group for Under 65’s. The problem is that unfortunately there seems to be a predominant focus on providing support for older people. This manifests itself in the form of supports which are predominantly during the day, which means that people like myself and the others in the group have little access to physiotherapy or other support options.
Another thought is that people in the Under 65 age range could be still bringing up children or have grandchildren who need to be supported. Thought could be given to surveying the people with Parkinson’s to see if someone could provide information and support for children and teenagers affected by this condition.
The concern I have is that there is already a public perception that Parkinson’s is something that happens to older people and by not fully recognising and supporting Under 65’s this can reinforce this stereotype.
We as Under 65’s are quite a unique group for whom the supports provided for the older population may not provide the type of support needed given their very different social and financial position.
Acknowledgement of this would be a first step towards finding solutions.
My journey with Parkinsons 
Hello, we have been following you knee journey with great interest and admire how well you have met the challenges of this surgery..I thought I would share a little about Parkinsons in our family;Parkinsons moved into our home a very long time ago, yet we are still learning daily some days we feel like newbies and others like the encyclopedia of knowledge.We have found that NZ is not equal in Healthcare…parts of NZ have having much greater resources available to them.Our man with PD (our warrior)was a young onset patient, during this time he could have given up work and attended some sort of therapy every day if he wished, such as boxing classes, singing classes, gym classes, swimming/ hydrotherapy classes, funded Outward bound course, even Salsa dance classes. Along with this was the LTSR course, a swallowing program OT, Orthotics and there will be more,oh yes the PD conference, alot of this all funded.As he turned 65 quickly these options weren’t there…We also moved Health boards..his PD now comes under the Care of the Elderly.He no longer has a Neurologist (there aren’t easy to find) He has a Healthcare team, these workers come and go and can be any team member.He doesn’t have access at all to a physio, or to see an OT, you will have to have had a period of hospitalization or go on a wait list to see one privately! then maybe referred back into the system.Two years on he is still waiting to see the Dietician.Counselling relating to PD or any mental health supports long gone for the over 65 group with PD.Podiatry and orthotics maybe privately if you are lucky.In our area there is a massage therapist who specialises in PD patients young and old she has a six month wait and again private.We see a wonderful Physician privately and have a great GP. There is a free gym class on the evenings. We do have a wonderful support group, attended by youngest 33ish through to all ages and stages of PD.Our longest group member with PD is 24 years, he is 66 now. His PD is catching up with him fast now, he is travelling to Auckland to see an OT privately and then hopefuly can get into the system to get some help.I would take any help you can get or advice that is of benefit to you and as you work in the Neurological area…push for help for PD patients.I have attended some functions arranged by The Brain Tree Trust in Christchurch they were excellent and attended by a mixture of age groups..I wish you all the very best on your journey…Sent from my Galaxy
LikeLike
Hi. Thank you for following my Blog and for taking the time to comment. It sounds like it has been a long road for you and your family, as none of us is the only person affected, the ripples of PD’s influence spread throughout the lives of those who care about us. Can I ask what area of New Zealand you live in? It would be useful to know for my information how different areas work. What help is available through your GP? Is there any way that you can get a referral to the hospital by your GP so that your family member can be reviewed. It would be useful to tap into a Social Worker in your area who would have better knowledge than me of local support options and might be able to advocate on his behalf. Also, they can look into funding for travel through National Travel Assistance scheme (NTA) if he meets eligibility criteria. I do have to be a bit careful about giving too much clinical advice on my Blog as I am writing it as an individual with Parkinson’s, but can hopefully point you in the direction of somewhere you can find a Social Worker or someone who can discuss your individual needs. If nutrition is an issue then that might be a way to get him further up the list and be seen soon, if there is risk of not getting the right amount of nutrients or there is a swallowing issue. If there is any concern regarding safe swallowing – I know I find it easy to choke – get your GP to refer to the local hospital for a VFS or Videofluroscopy. This is the only real way to check on swallow etc. From that it might provide a back door to referral to a dietitian if it is shown that his nutritional needs are not being met or swallow is risky. I have a Neurologist, but only saw him at diagnosis and see his Neuro Nurse maybe once a year, but can ring her for any advice. Perhaps she/he – if they exist – can give you some idea about what help is available.
I do think NZ seems to fall short compared to Aussie as most offerings are during the day which exclude people like myself who are still working. I have been in contact with someone from Parkinson’s NZ about another matter – I am trying to get backing to turn my Blog into a book so that hopefully I can reach people who don’t do online. Could I have permission to copy your comment to them in an email without identifying you and see if as a National Society they can be made aware of the issues. If you could let me know what area that would certainly help.
Also, there are some online resources such as ‘The Parkinson’s Voice Project’ which helps with vocal exercises which is a good way to support voice for those of us with PD.
I hope this helps.
Sue
LikeLike