Any advice or positive feedback for me and my newly diagnosed husband?

Hi, My husband was only diagnosed with Parkinson’s disease last September and put on the lowest dose of Madopar. He’d had a couple of cardiac arrests in 2018 causing a hypoxic brain injury, and the neurologist primarily thought he may have Vascular Parkinsonism prior to this, so there was a delay in treatment. His symptoms were quite severe with rigidity, balance issues, hand tapping, heavy legs and an inability to walk more than 4 or 5 m before having to sit down. His next appointment was due the end of December but due to the shortage of doctors and neurologists at the hospital his review appointment was delayed until the beginning of March. We saw slight improvement on the Madopar and he began to be able to walk a little further and was managing to get into bed. However, by the middle of December he deteriorated at a rapid rate, could no longer dress himself and was freezing continually in the house and when shopping, and we bought a little mobility scooter to give him some quality of life. On Tuesday he froze completely and was unable to walk or move at all and had to be taken into hospital with what the out of hours doctors called a Parkinson’s Crisis. He was finally seen by several doctors, a Parkinson’s Nurse (at last!), a physio, and OT, a medical clinical co-ordinator, all co-ordinated by a service co-ordinator. We were overwhelmed by so much help and the support we were given. My husband’s dosage of Madopar was doubled and were sent home by ambulance with him in a wheelchair which they lifted him from into his chair. Here he stayed and spent the night, being unable to manage the stairs. Miracles do happen however, as the next morning he was able to walk better than he has walked for over a year and he hasn’t frozen once since this episode. Even the Parkinson’s Nurse couldn’t believe it! We realise this is only temporary and the symptoms will eventually return. Has this ever happened to anyone else and for how long did they remain mobile? The zimmer frame is now in the garage. Long may it stay there!!

Hi Jackie. So sorry to hear about your husband’s condition, but wonderful news regarding the recent turnaround! Please feel free to contact our Helpline as they may be able to shed some more light on this. They are able to offer professional advice on a wide range of issues affecting Parkinson’s patients and their families.
You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Moderation Team

Thank you so much for responding. This has been such a distressing time for us and our children and at last we feel we have support and advice. It’s wonderful to know there is after all so much help out there. We count our blessings.

Hello what a traumatic time you have all been through. I just wanted to say welcome to the forum and hope you will continue to use it for whatever you may need in terms of support of whatever kind. I don’t think I can be of much use in commenting on what you’ve written but it was lovely to hear your husband is doing better. Long may it continue. My best wishes to you both.

Hi Jackie,

Sorry to hear about all of this - it must have been really stressful to go such a long time without support but then a relief to finally get some help. I’m pleased to hear your Husband had a real turn around too and hope it continues. My Dad was diagnosed in September last year, and like your husband had numerous cancelled appointments. We’ve taken the opportunity since to take matters into our own hands and research what could improve his symptoms. The research I’ve done talks a lot about the benefits of exercise, especially continuous movement exercises like Thai Chi for managing the motor symptoms of Parkinsons - adaptations can be made too like seated yoga if balance is an issue. I’ve read into a lot of exciting research too that talks about diet to manage Parkinson’s and wherever possible trying to have an alkaline diet to give the body the energy it needs.

My Dad’s about to invest in an indoor exercise bike which is seen to be really useful for the motor symptoms too. I really hope things continue to improve for you and your Husband! :slight_smile: Best wishes,
Laura x

Thank you Laura. I hope your dad finds his exercise bike useful and it eases his symptoms. We do try to get out for a walk on a daily basis, although the awful weather these past few weeks has deterred us more often recently. He did attend a Strength and Balance 12 week course which he enjoyed but he was unable to do many of the exercises such as marching and side stepping as he can’t lift his feet off the ground. The Parkinson’s Nurse has given him strategies to get him moving when he freezes to stop him from toppling forward or accerlerating with little steps, which he has finally got his head round and seem to be working, I wish you luck x

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Thank you Tot. I wish I’d found this forum months ago. We’ve already a couple of bad days but today is a really good one, which we celebrate!

Hi you mention your husband received tips to help with freezing is this something you could explain in words. Glad he found it useful.
Keep well Minky

Hi jackie2000
You as are both probably feeling scared about the future and relieved at the positive reaction.
Getting the right drug regime and getting the timing right is the key to staying as mobile as possible. Also finding the right excersice for you, be it yoga or Parkinson’s Warrior programme, can improve your strength and balance. Good luck to both of you.

Hi Minky

What is helping is
Stand up straight with legs slightly apart
Try to put your weight on one leg
Than lead with the other leg as when walking normally, taking a long stride. This helps get his rhythm back

He also tries to imagine he is using his stick to walk as counting etc doesn’t work for him.

The Parkinson’s nurse has also suggested we put tape down along the floor in small spaces/doorways so he almost has a line to step over although so far, we haven’t needed to do this.

Thank you Juju
His neurology appointment has been put forward a week, so hopefully his drug regime will be sorted. What is the Parkinson’s Warrior Programme? We would be really interested to learn about this. He has attended a strength and Balance Course which was more of a falls clinic.

Thank you Jackie for your response, appreciate it.
I have been trying shifting my weight by swaying side to side slightly to try and lift one foot off the floor, it hasn’t worked too well so far. I think I need to concentrate more. When I am in a shop I stand with my feet apart, one foot forward of the other, that helps most of the time. Looks a little strange I imagine. Thank you once again my best wishes to you both. Minky

Hi Jackie it is so enlightening to read the wide and completely varied accounts of day to day struggles with PD. Sounds like you have at least had some positive outcomes to give you some hope. My husband and I are at the start of our journey but your candour and openness about your ups and downs gives us some hope we may just be able to address this one problem at a time. Hang in there and thank you.

Just to throw in my tuppence worth, I find it helps to look to where I am heading where my natural instinct is to look down at my feet or just ahead of my feet and try to take big step . You do however need a clear and uncluttered space to use this technique but can be used inside and out.

PD Warrior is a physical rehabilitation programme of motivation and exercise that works on mind and body coordination.

It’s for people recently diagnosed or in the early stages of Parkinson’s disease.

The PD Warrior exercises are designed to slow the progress of Parkinson’s by helping the brain to naturally rewire and protect itself. A

This is more effective than walking, going to the gym or swimming.

PD Warrior can:

  • improve mobility
  • decrease tremors
  • improve your confidence in doing daily tasks
  • increase your energy levels
  • slow down the progression of Parkinson’s disease

It’s designed to work with your medicine and not replace it.

The PD Warrior programme is for you if:

  • you’ve recently been diagnosed with Parkinson’s disease
  • you’re in the early or moderate stages of Parkinson’s disease
  • you’re still reasonably fit and active

We also have supervised exercise classes for people with Parkinson’s disease who are medically stable and are ready to start exercising.

What happens at a class

The small group class is led by PD Warrior trained instructors who’ll teach you the specific core exercises of PD Warrior. The class also includes other activities such as boxing, kettlebells and battle ropes. This is part of the PD Warrior approach of power and high effort level exercise.

How to join a class

If you haven’t done PD Warrior before

If you haven’t done PD Warrior before, you can sign up for the 10 week beginner’s course.

contact your local brain charity who will be able to give you details of local classes.

Thank you Juju

He is seeing the neurologist on Monday and I am printing this information up to take with us. We haven’t heard about this program at all where we live and it will be interesting to learn if this is available in our area.
Kindest regards Jackie

Hi @jackie2000

I do a PD Warrior type class locally (I’m in Essex) and find it very helpful. It’s worth bearing in mind that they sometimes don’t use the PD Warrior name as it’s franchised and quite expensive to get permission to do so.

Have you used the search tool on the PDUK website to see if there are any classes locally to you?

14 years ago I went through the same life changing experience. I soon discovered that there are massive misunderstandings and alot of people loose hope and familys fall apart. We worked with Steve and Parkinson’s UK to create First steps program for newly diagnosed. Ask them about it. Based on the model used by the European Parkinson Therapy Centre in Italy and present in 45 countries. Ride a bike… Ok how? Research is very clear on this. Look up Jay Alberts cleveland clinic cycling. Physiotherapy NO, it does not work. Neuro therapy is very powerful. PD warriors, highly recommend but remember group therapy is maintenance therapy. Everybody has Parkinsons in a different way. So to improve YOUR symptoms you must do one on one therapy. Remember there are 4 pillars to fight, live and maintain quality of life and we have covered. Only two! Yes you can maintain quality of life. Tje trith about Parkinson’s is that few people get to know rhe truth. We are not victims by definition as a victim is somebody with no choice. We can choose to improve annd manage our symptoms. The choice is yours
Alex European Parkinson therapy centre, Italy
Take back your life