My wife who is a young 81 has had PD for 14 years but since August this year things have took a turn for the worse. I am 55, we have been married nearly 26 years, been together 30 years and have had an amazing marriage. I had been working until August when she had 3 falls one ending with a night in A&E during the covid crisis.
They diagnosed her with foot drop on her left leg which explained the falls being forward. A foot brace was given which did bring the foot back to normal, physio gave us exercises but since then the foot has dropped again and is affecting her balance. An MRI revealed damage to the nerve in the lower back which is the usual reason but she also had that leg in Compression bandages for nearly 2 years because of oedema. I had read of that possibly being a cause of nerve damage in the lower leg.
My time off from work raised many points as to how she was feeling more anxious, struggling with daily tasks, missing doses of medication, her balance getting more unsteady etc.
I have since taken the decision to stop work to care for her. The correct decision as her needs with daily tasks, dressing etc has increased considerably.
We have waded, with lots of help, through the Carers allowance and Universal Credit system to get financial help as we still have a mortgage.
Local Adult Social services have been fantastic with equipment including a riser/recliner chair. Our assessments have been completed and we are in touch with them constantly.
To add to our woes, we both tested positive for Covid. Neither of us having serious symptoms. But in the last 2 weeks my wife has developed what has been diagnosed as Covid fingers! Some of her finger tips turning dark blue through poor circulation in the blood vessels. A new found problem with Covid apparently. They are now being treated and slowly coming back to life.
With reduced grip, the foot drop and parkinson’s seeming to take hold her balance has been poor with many falls since. These have been falls where she has fallen back.
Recently she seems to be not quite with it and I am thinking the Parkinsons is taking hold. Our PD nurse is trying to help us with medication as now I have taken control of her medication we wondered if the dopamine was possibly too much as previously she was missing at least one dose every couple of days.
She takes sinemet 25/250 4 times a day with Entacapone and Amantadine twice a day. One of these has been reduced 25/150 to see if it makes a difference as Dyskenisia is setting in as well!
It is so tough as GP’s have very limited knowledge of PD. The PD nurse has not been able to visit because of Covid to see the change in my wife.
We have our yearly appointment with the Neurologist in February where he will see a major change in her. Fingers crossed that doesn’t get cancelled.
Personally I am struggling to see her suffer, I get angry out of frustration for her as she has always been fit and lived life to the full and can see the frustration in her.
I am hoping to get the MRI results from the GP to take to an Osteopath in the hope she can help correct the foot drop to some extent. She has helped us before and knows my wife well.
I am writing this long winded thread in the hope that someone has had similar experience and may be able to suggest some help with our experiences.
PD is such a tough disease to manage as everybody is so different in how they cope with medication etc.
I wish we could have more than one yearly appointment with the Neurologist. Things can change so quickly and their experiences could save a lot of anxiety for everyone involved.
Thats me done folks, sorry its so long winded but I hope somebody could suggest some help from somewhere. X
Hi MBB, we’re very sorry to hear things have been extra difficult of late. In addition to the help to come from our lovely community, we just want to make sure you are aware you can call us directly for free and confidential support at 0808 800 0303. Whatever our helpful staff can’t accomplish for you right away, they can provide resources and direction toward.
Thank you for sharing your story. We’re rooting for you and your missus, and we will not rest until there is a cure.
All our best,
Oh, how I agree with you. But I would settle for once a year. I have been on a waiting list to go onto the normal list for an appointment. But what is that I ask. I only get a phone call and that one lasted 3 minutes. That was the neurologist. I am waiting for a physio call to arrange course of exercise’s for my camptocormia which by the way now so bad it is only a matter time before I can no longer stand - even if I am so bent I nearly fall. I things go as they are it will be around 3yrs since I saw anyone.
I know several people who have taken a decision to move neurologist even if it is in another town and miles away. say Derby - Nottingham from Leicester and even further. keep safe x