First time posting

About Parkinson's and health Newly diagnosed
1

Hello everyone, my husband and I are being put through a mill at the moment.

I’ll try and keep as short and to the point as possible.

Husband hasn’t been well for a couple of years now, he used to be what people might call an action man, always first on the scene to help, never shirked from lending a hand… and he’d go for a power-dog-walk a couple of times a day. At the moment he’s now still in bed (11.30am), he’ll have a shower which will tire him out, then he’ll descend downstairs backwards using a walking stick for support. We’ll have a slight argument about food as he’s lost his appetite.

He’s been waiting for a hip replacement, to be quickly followed by two knee replacements. Dec 2020 he had a pacemaker fitted - the arthritis and heart problem has probably come about through a hereditary condition we had no idea he had ‘Haemochromatosis’ - this is the opposite of anaemia, his body over the years had stored a toxic level of iron.

Despite the above, he’s become really ill over the past couple of months, we’ve just moved house (5 weeks ago) and we put his loss of weight and anxiety down to stress. But things have progressed…

  • He’s never had a brilliant memory, but he can’t appear to retain anything, the amount of medical appointments of late appears to be all in a fog (Dr gave him a dementia test and found him ok).
  • He’s developed tremors in his hands, it was very noticeable the other day where he found it impossible to eat peas.
  • His eyesight has become blurry, and his previous long-sightedness has shortened.
  • He’s lost his confidence around anything electrical or complicated, he’s finding it difficult with the remotes on our bedroom and livingroom TVs (both TVs are not the same make)
  • He’s so subdued, and is content with watching TV to his heart’s content all day long.
  • He can hardly walk now, and is very unsure on his feet - yesterday I took a milestone decision to order him a wheelchair. This is the guy 6 months ago who balked at me buying him a stick. He’s delighted a wheelchair is being delivered.

Our new GP looks to be a God send, we’ve had several blood, urine, poo tests and a chest xray. The GP said she’ll contact a haematologist for advice as to what blood tests are necessary to see if the Non-Hodgkin’s Lymphoma (cleared of it in 2010) has returned. The Dr said she’d ask for a referral to a neurologist in case my husband has developed Parkinsons. She also said it’s practically impossible to get an appointment with a neurologist (is this correct?).

Until we get some form of diagnosis I guess we wont be able to seek help or support?

My husband is 77 and I’m 68.

Just had to share with someone… life can feel very lonely in times like these.

Thanks for reading :heartbeat:

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Hi @JenniferM, welcome to the forum. It may help you if you speak to your GP Surgery and ask about a Parkinsons Nurse. If there is one it would be worth your while speaking to or getting an appointment with them so as you know what to expect should your husband have Parky. In the mean time it would be an idea to write down all the things you want to ask who ever you see first. You may get lucky and get to see a Neurologist, I suppose it depends on where you are in the country and what the demand on their time is. I’m sorry i’ve not been much help but at least i’ve acknowledged that you’re here on the forum, maybe someone else will pop in and offer up some advice. All the best to you.

Les

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hello JenniferM, I can understand that it is so depressing especially when you are not able to find some sort of reasoning behind the cause of your hubby’s problems. Parkinsons usually consists of, in the early stages, a loss of taste and smell, some relate to tremors but not everyone, some relate to having a what they call an expressionless look on their face, they can often relate to the loss of swing in their arm when walking either left or right arm . Another way to see if Parkinsons has
developed is to try your Hubby to on one hand putting first finger and thumb together to see if he can open and close them quickly (like pecking) then try on opposite hand. Then try patting his hands up and down on his knees quickly, see what his reactions are.

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Hello Jennifer M
Apologies but I have only just caught up with your post. It all sounded pretty awful and I just wondered how things are now. I hope you are a bit closer to getting some answers but sometimes it does takes some time to reach a definitive diagnosis and in the meantime you are left in something of a limbo land managing as best you can. I do hope some progress has been made.
Tot

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