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.
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.
You’re right in what you say keeping strong and being positive and adjusting life accordingly is the way to go.
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,
Hi there, my husband was diagnosed with PD 7 years ago (though we believe he had it for at least 10 years before), he is now 57. He has been going to a ‘normal’ gym since diagnosis doing mainly hit classes, but he is finding it increasingly difficult (and embarrassing because of freezing issues). I think he really needs a personal trainer who knows about PD, can you tell me where you found yours please? I am in Bakewell (so South Yorkshire/North Derbyshire would be perfect)
Hello there Denise451
Sorry for the late reply and to hear that your Hubby is finding it difficult at the gym.
My Hubby’s Personal Trainer is called Grant at Neuro Active Fitness in Stretton Warrington.
It’s about an hour’s drive from Bakewell which I know may be too far for some folk (depending on personal circumstances). However, it takes us about half an hour and I would happily drive to Scotland if he moved there if it meant my Hubby could continue with him. He’s made huge improvements in strength, balance, co-ordination and mood etc. I’m not foolish enough to believe that things will continue to improve forever but we’re just grateful for the improvements we’re getting as they’ve given us back a better quality of life. He has ‘one to one’ sessions with Grant and this suits him perfectly.
There’s another Personal Trainer called Charlotte Maria at PD Kinetics who is also very good. She does sessions in numerous different places and perhaps there my be one a little closer to you. I know she does group sessions but am not certain whether she does ‘one to one’.
Also, I’m sure that PD Warrior have sessions in Sheffield. May be worth looking them up too.
Whichever you choose, I’m sure you’ll be pleased as the important thing is that they understand the condition and tailor the exercises around the individual persons abilities / needs.
Good luck and be sure to let me know how you get on.
Hi, I’m the same boat. My husband’s 36. We’ve 4 young children. I’m all abit lost with everything but my hubbys laid back.
We’ve gone from let’s breath everything is fine for once in our lives. To this huge shock. I feel so numb
I know how you’re feeling. Do you have a good neurologist? Ours is so reassuring so I try to listen to him and avoid anything too negative. He says it’s his job to get the medication right and to keep my husband going till he’s 85! I’ve done a lot of research and read many blogs and there are plenty of positive stories out there. As our neurologist said…its going to be tough but things could be a whole lot worse, and he’s right.
It’s been 2 months since my husband was diagnosed. The medication he is on is brilliant, you wouldn’t know anything was wrong. Exercise is really important too. My husband goes on the exercise bike most days.
I felt permanently sick when this all happened, it was so out of the blue. But things are ok. And my husband is sitting next to me telling me to tell you it’ll be fine. Good luck with it all x
Its massively important to be positive, take each day as it comes, some will be better than others, remember the good ones forget the others. He is young and fit and there’s no reason why he can’t carry on as normal for many years to come. You have got each other and your children, tell him from me to keep going, it is possible but you must be positive.
xx Diagnosed 15 years ago at 35 years old with a young family and still going strong!xx
I’m in the West Midlands (Herefordshire), I attend weekly Conductive Education sessions and to be honest I don’t know how I would be if I had not done that regularly for over 12 years. Enquire in your area you may be lucky enough to have this service available and don’t delay start sessions immediately. I can talk about the benefits all day long, any questions, just ask.
Your story has been very reassuring to me at a time when I have been struggling to grasp what is happening to my husband. He’s 45 and Sinemet isn’t working as well the consultant promised it would. Please can I ask what medication your husband has been on?
He was initially on Co Careldopa 1 tablet 3 times a day. His specialist has recently added 1 Rasagiline a day too. Our consultant has said all along that it can be trial and error with medication, we’ve clearly been fortunate that his meds are keeping things under control for the time being. He is also using the exercise bike 3 times a week. It’s been 6 months and we are due to see him again in a couple of weeks so I’m interested to see what he will do with his meds next. The only thing my husband thinks has changed in the last 6 months is his sense of smell.
I think about his PD every day and I worry so much about our future, but fortunately for me my husband refuses to be drawn into those thoughts.
I hope your husbands meds start to help soon. I know I was desperate for positive stories when we first got the news x
Thank you so much @KatieP
We had an appointment with a PD nurse today following an email to my consultant where I voiced my concerns.
The nurse has suggested adding Rasagiline once a day. I really hope this helps.
The nurse was great. Really helped us feel reassured and gave us hope things can get better.
Sending you a cyber hug. Worrying is all I do too. It’s been a bolt from the blue for sure. Cant get my head round it some days. This time last year life was ‘normal.’
It’s good to know there are supportive places such as this forum xx
I’m so happy you’ve found the forum to be supportive and I hope your husband will start to see improvements with his condition now they’ve added Rasagiline to his medication.