Loss of Mobility

[Redjune1]

My husband has PSP and although his mobility was poor, up until this week he could get around our flat using his stick. This week though his mobility just seems to have gone almost completely. He staggers around and most of the time I need to walk backwards holding his hands to help him walk. I don’t understand why it has got so much worse in just a few days. Also, how do I cope with him once he is unable to walk at all? I struggle now, I’m only 4’10” and he is a foot taller and weighs 17 stone.

[Millidog]

Hi, I understand this must he a shock and concerning. I have the same worries 5ft 1 and 7 1/2 stone v 6ft 2 and 14.5 stone. My husband is currently OK around the house but aware this could change we have a 4 wheel walker he uses when out and this may he useful for you indoors. Do speak to your Occupational Therapist ASAP and say urgent that you have a walker and a wheelchair assessment as both can be used indoors. It's not much advise but hope it helps a little x. Whilst waiting (we got walker provided within 2 wks and waiting for wheelchair) Contact Redcross as I believe they can loan wheelchair and may have walkers xx

[Redjune1 in reply to Millidog]

We have a four wheel walker which he uses outside but is getting slower and slower with it. He also got a wheelchair just before Christmas which I thought would mean we could get out together, but unfortunately there are no dropped kerbs outside our flats which means I can’t take him anywhere. Our flat isn’t tiny but I dread the thought of having the walker or wheelchair in the living room as they take up so much room.

[Millidog in reply to Redjune1]

Hi Again , I am sorry to hear of your struggles and understand. I find changes to our lovely home sad too but recognise I need to make them - moving furniture out, ugly aids etc but maybe worth try with the walker inside if not the wheelchair. At least you could try it and prevent you having a fall when walking backwards. I speak from experience on that one

[timbowPSP in reply to Redjune1]

I really empathise, and am using you as my guide - I am male 80, stepping just behind ur man. I wobble around the flat without a stick but always holding or touching most surfaces. Need stick outdoors, and have 4wheel walker. Gotta move house and get a wet room. New Yr project. I much prefer writing stuff and chatting with friends. Bonuses are my very loving caring Carer, and no fear of death! Timbow xx

[LuisRodicioRodicio in reply to Millidog]

I agree with Millidog.

A big hug.

Luis

[LostinHeadSpace]

Redjune, is it at all possible that he has a bladder infection or something else that could be triggering the decline? Sometimes that can cause things to be suddenly worse?

Lost

[LuisRodicioRodicio]

Hi Redjune1!

Following the idea of LostHeadSpace......

• UTI. Urinary Tract Infections

To identify a UTI, keep an eyeout for the following symptoms: A burning feeling when you urinate. A frequent or intense urge to urinate, even though little comes out when you do. Pain or pressure in your back or lower abdomen. Cloudy, dark, bloody, or strange-smelling urine. Feeling tired or shaky. Fever or chills (a sign the infection may have reached your kidneys). Consult a physician as soon as possible. Meanwhile this information can be useful:

1. UTIs are infections caused by bacteria in the bladder.

2. The cerebral cortex interprets messages as full or empty bladder. This becomes a nerve function and as the neurodegenerative disease gets worse so does the signaling and therefore bladder control. And aging is an issue as well.

3. For fast control of a possible UTI I use the "test strips" Combur-10-Test.

In a sterilized container the first morning urine is collected, neglecting the beginning and the end. One or two strips are inserted and compared with the references.

Notes.- Sometimes, in ages over 65 years, the case of a UTI can NOT have fever as a symptom but the patient manifests discomfort, restlessness and even disorientation. Therefore it is advisable to regularly monitor the smell and color of the urine, applying a Combur-10-test strip control at the slightest suspicion. It is critical that the infection does not reach the kidneys. In case of suspicion go to the physician as soon as possible. Testing for an “antiobiogram” is important to get the right antibiotic.

In this disease, episodes of restlessness have been described. The consequences can be slips and falls that can have serious consequences. Discarded UTI problems the symptoms of restlees may be due to a natural resistance of the patient to avoid being immobilized, losing his freedom and being dependent on other people to satisfy his needs. It may be time to consult with the physician and see if it is appropriate to prescribe a tranquilizer.

Hug and luck.

Luis

[LuisRodicioRodicio]

Hi Redjune1 again!

First: If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

This link could help:

parkinsonslifestylemanageme...

On august 2021 PSPA launched an interesting information about systematic exercises: “Tips for staying with PSP&CBD”.

pspassociation.org.uk/app/u...

Hug and luck.

Luis

[Rose1sunflower]

hello, I have had similar problems. My husband has gone from walking with a stick, to four wheeled Walker and wheelchair when out quite quickly. We have noticed that a change in balance and confidence in balance can be affected by slight illness/infection cold etc. we got an excellent walker via our brilliant Neuro physio who also gives useful exercises and walking tips. Sometimes his left side gets ‘stuck’ and he can’t move. This walker also folds so doesn’t have to take up much room and is also transportable. It is amazing how quickly the amount of equipment can build up! I’m not sure where you live but have found out from various support groups that provision of equipment and support staff really varies from county to county. Good luck!

[SammyGee in reply to Rose1sunflower]

You are very fortunate to at least have this therapist support ..... my wife has essentially been abandoned by her GP and specialists, and we haven't seen a physiotherapist of any persuasion for nearly 12 months ..... no amount of badgering or complaining seems to kick them into action so my wife just gets whatever help I am capable of providing,

[Millidog in reply to SammyGee]

SammyGee, I'm so sorry to hear that and it's so frustrating. Do talk to the Pspa and get their advice. Just after diagnosis we faced a GP who was nothing short of evil, couldn't do, wouldn't do, didn't want to know. I spoke with Pspa and they told me to complain to surgery, request new gp and gave me a list of things to say and request referrals for physio, definitely OT and more and advised how to complain to cqc if needed. When I got shirty with surgery and said all this I got some action as they fear a complaint to cqc- change of gp, meeting with gp, referrals etc. Its your wife's right to get this help so do demand it. Love and hugs