Husband recently diagnosed with YOPD


#21

Thank you for taking the time to message. Will certainly take all the advice on board.


#22

Hello Katie P
My husband had symptoms for a few years prior to finally being diagnosed in February '18 at the age of 52. We were convinced it was PD but the GPs (locums) kept saying that it wasn’t PD even though both his parents had it.
So, although we knew in our hearts that he had several symptoms we were shell shocked when it was finally confirmed. We didn’t cope well with the news at all (which came right after losing his Dad) and had a traumatic 6 months trying to come to terms with it. I feel so silly now typing these words but feel I should be truthful with you. We were both very low during this time.
Counselling and a mild anti depressent worked wonders in helping him to come to terms with it all.
I found a great Physio who helped him to regain some of his strength and balance. We also started to go cycling, beginning with adapted bikes and progressing to two wheeled mountain bikes in addition to using an exercise bike at home.
I found this forum which has been immensly helpful, as has the Parkinsons UK local advisor.
I knew the helpline number by heart due to the number of times I phoned it.
Our big breakthrough came when I found an AMAZING Personal Trainer who specialises in Neurological Conditions and particularly PD. He himself was also diagnosed at a young age, a year before my hubby and so understands the condition from a personal as well as a professional perspective.
My hubby has regained his strength, co-ordination and balance. In fact he’s stronger and fitter now than he was 10 years ago.
We’ve joined a social group locally which is aimed at working age people with PD and this was also a great help. I’ve learn’t that everyone is different in terms of their symptoms, how they deal with them and what works best for them.
For that first 6 months, PD was the sole focus of our lives and now it hasn’t gone away but is just a part of our lives. We’ve got our lives back, he’s still working full time, we’re socialising again, he’s got his sparkle back and we’re laughing again and enjoying our lives.
My only regret is that we didn’t find the Counsellor and the Personal Trainer sooner.
This is our story and I hope it will help you in some way. :grinning:


#23

You nearly had me in tears reading your story…happy ones though! Heart breaking to read how difficult things have been for you (no doubt made all the worse having seen PD first hand already), but so wonderful to hear how things have developed for you and in a positive way. Long may it continue! Your advice is really helpful, thank you. I am certainly finding this forum to be of great benefit.


#24

Hello again Katie P
Really pleased you found our story helpful. As soon as my hubby started to improve both physically and mentally my mood improved too and I’m fully back to my bright positive self.
We’ve learned a lot about ourselves this past year and have learned that in most situations there are things that we can do to improve things. It just takes a lot of time, effort and unfortunately money to get the right help and support but it’s well worth the sacrifices.
We’ve also learned to make the best of everything, enjoy the little things and focus on the positives. I’m not saying that everything is perfect as he still has an issue with his walking (apparantly unrelated to the PD) but once you get into the right frame of mind everything is so much easier to deal with.
When I made those first tearful (almost hysterical) calls to the helpline I genuinely felt that our lives were going downhill at a rapid rate and never imagined I’d find myself offering support to anyone else about this condition at any time in the future.
Very best wishes to you and your hubby. You’ll soon be in a position where you’re able / willing to support newly diagnosed and their spouses / families by commenting on their new posts. :heart_eyes:


#25

Hi Zo,
You’re right in what you say keeping strong and being positive and adjusting life accordingly is the way to go.
Spencer


#26

Hello,not all neurologists are very good,I was told mine was very good too,but he’s misdiagnosed of for me,since February this year I’ve been off of all of meds,he put me on co-benrodopar toast November and my life became a nightmare,very elated over sexed,accussing my wife of playing away from home,stopped he doing online banking,and so on on on,it went,till I contested my case with the neurologist,saying to him that he should have sent me for the brain scan before coming to my diagnosis,he then told me to stop taking all of my PD meds,and to this day I still have not had the scan he said he’d organise for me,he hasn’t organised it at all,all I want now is to have the scan,and have it out with him how he acctually came to the conclusion I had PD,don’t give up hope yet,he may have been diagnosed wrongly yet,let’s hope so,don’t forget that ALL of the neurologists,doctors get a huge bonus paid to them by getting as many people taking tablets prescribed by themselves,